DISCLAIMER: iGuard is not intended to be a substitute for professional medical advice. iGuard cannot and does not take into consideration every possible interaction or account for individual responses to medicine. Different individuals may respond to medication in different ways. The absence of a warning for a given drug or drug combination in no way should be construed to indicate that the drug or drug combination is safe, effective, or appropriate for any given patient. Always seek the advice of a qualified health provider with any questions you may have before making any changes to your treatment. The use of the iGuard site and its content is at your own risk. The iGuard site and the information contained in it is intended for users in the United States and information in other countries may be different.
Global Patient Feedback for Multiple Sclerosis ( Post a comment )
Question/Comment:
i was dignosed with MS in late 06 and have been getting worse. I started with rebiff and had problems, then was switch to copaxzone, then switch to betaseron ( whatever) now i'm back on rebiff. i have severe chronic pain, fatique all the time, burning ( sensitive to touch) tingling in feet, headaches, vision getting blurred, and I couldn't hold down my job, now drawing disablity, my doctor told me that an employer is not going to hire me with the problems i'm having, i'm a liablity to them, but you know what i'm not upset anymore because it's nothing compared to Jesus had to deal with on earth, and other people are worse off than me. I do look at it like this GOD allow things to come upon us for his will, your quess is good as mine what it is, but that's how i look at it now instead of complaining all the time and i have just to deal with it. now that i'm not working i'm spending time at home with my husband and 5 kids now ( not the way want me to spend time, they want to play, be tired all the time, but at home) to have bible study, read to them ( when i don't forget) . they help me alot, especially my husband, he's disabled too, but he still helps. thank God for the people who are strong and understanding!
32 year old Female – Source: iGuard
Posted: 2009-02-12 08:48:12
Member Answer/Reply:
What a wonderful attitude you have! I, too, have MS. I live alone and have no one to help, but I've found thst hsving the MS makes me more self-reliant. Yes, it's tough at times, but I know Jesus is helping me.
52 year old Female – Source: iGuard
Posted: 2009-02-14 17:12:23
iGuard Answer/Reply:
Jesus is the only way to get through have MS. I also have MS. I have found that helping other people through in whatever you can helps to also deal with it. When people find out that you have MS it helps them open up to you. Where as they wouldn't talk to to you if didn't. Because they think that you can not understand how hard life can be. It is the perfect witness. Everyone has problems, it just how you deal with them. Life can be so hard but, like you said look what Jesus went through. Thank God when get Heaven we will not have these bodies! Take care I will keep you in my prayers.
Posted: 2009-03-04 13:30:06
iGuard Answer/Reply:
Thank you for the encouragement message you left. I too,have MS,now since 1993.I know that God allowed it for a reason and maybe I won't find out why till I cross over.
OKTEMRADT@HOTMAIL.COM Thanks,Tom D
Posted: 2009-03-05 14:14:38
Member Answer/Reply:
Do you have an MS specialist for the MS? I have had it since 1995 and been on avonex, copaxone (11 years) and now Tysabri for the past two years and doing great! I have NO problems. Am in touch with the MS Society a lot and find it VERY helpful.
A far as God being responsible he is by NO means responsible for this, he is allowing Satan the Devil to roam around the earth for a little while longer and cause all this pain and suffering to prove him wrong, that man can worship God by his own free will because of his love for him. Soon God will make a big change in things. We are definitely living in the last days Jesus told us about. I hope you continue with your Bible study. That will help.
My husband is disabled too. (I am still on disability because of the MS although I used to have problems) He has a bad back injury and has many surgeries and can no longer drive a truck which is what he did for many years thus the back injuries. Be well. Pehaps Tysabri would work better for you. Joanne
62 year old Female – Source: iGuard
Posted: 2009-03-05 17:16:09
Member Answer/Reply:
Hello. I suffer from MS and was also on Rebif for a year. I had the same problems and also lost over 30lbs in weight. I was only a135lb to begin with. My Neurologist told me that i could change to another interferon. "AVONEX", but if I did that I could NEVER go back onto Rebif as the side effects would be horrendous and it would do more harm that good. Also that it would interfere with hormaonal changes etc in my body. (I am a woman by the way).
I changed to Avonex,the needle is scary....VERY large, but they do have a smaller option, much sharper and believe it or nor MORE painful. So i switched back to the larger needle. I Ice the site well, as I prepare the bandaids, gauze pads etc, then my husband does the actual injection. (i can't do it!!) heehee. The sight of the needle is enough for me. However after the side effects wear off, about 24-48hrs maximum, I am realtively ok. The side effects can be tiresome. They make you ache, (some weeks worse than others, a rare headache, sometimes quite bad, tingly sensations; sometimes 2 - 3 days after the injection, lasting only a few minutes, and only once or twice, a few other side effects which are too minor to mention. Since being on the Avonex, I have had a 30% improvement in my vision. I have Retrobulbular Optic Neuritis in my right eye. I went totally blind over 20yrs ago, they had not linked it to MS at the time. There is no cure or operation for the severe damage to tthe Optic Nerve. $ years ago i was diagnosed with MS and it was then found to be linked to the trouble with my eye. This year I went to see the Opthamologist and he was astounded to find that the "so called" Incurable disease of my eye had improved! It is NOT supposed to! It can only stabilise and then get worse! He studies the disease and specialises in it, he could not believe the test results, so he re ran them, they were correct! My lack of co-ordination, which i had been experiencing, had not been due to my "bad" eye having a few off days, but an improvement! So I was having to re-cordinate with the improved vision! I am amazed. On Rebif, when i was asked if I thought it was working, I could only say i didn't know, that i would have to wait for the MRI to find out. Yet since being on Avonex for a year, when I am asked the same question, I say YES! The numbness which I had in my toes and feet has disappeared, (with the tingling sensation) The tingling was a sign it was trying to stop the numbness. My vision has improved by 30% and the "Episode" of MS I ALWAYS get in August, NEVER happened last year! I have bad weeks with the injections sided effects, where the aching can be bad, but nothing too severe. I just get up and move around slowly at first, then gradually the aching starts to subside, i take pain killers only if the headaches get really bad. (not very often). All in all, I DO NOT think you should have been placed BACK on Rebif! It is dangerous, according to my Neurologist. I will stick with the once a week pre filled syring from Avonex! Believe me IT WORKS! I can SEE!!!
You want to make an appointment with your Doctor and ask him about this, or better still change your DR! He should not have put you back on it! You can visit the site. www.avonex.com for all the information on the drug. it is similar to Rebif, but better. Also it is a once a week injection. I usually inject on a Thursday night, a couple of hours before bed, then have a WARM not HOT shower, before going to bed. The side effects are at there worst through the night, but you are asleep! Friday's i ache a little. The first month you will find the side effects a lot worse than you would like, but they do subside. Thbey never completely go away, because they think it is only a weeklyt injection, the body forgets....so it is like the first injection evertime. They cannot swear to this but it is one theory. Some weeks though I don't gety any side effects at all. Try it. Believe me you will not be soory. it may even help your vision, as it seems to have done mine. Good luck and take care of yourself. Keep moving as much as you can, gentle walks etc. I find walking helps a great deal and the air outside, especially in the Spring, Autum and Winter helps to clear the fuzziness you feel! In the Summer the warm sun aslo helps. (although steer clear of walking in extreme heat!)Staying mobile even if it hurts at first pays off! The pain does subside and eventually goes away. it stimulates the nerves in your body and all your senses. Have a nice weekend/week. Take care.
Love to you Tina-Claire
48 year old Female – Source: iGuard
Posted: 2009-03-06 06:49:44
Member Answer/Reply:
I have had MS since 1987 (i'm 52). I went an Avonex in 1996 (one of the first to try it) and stayed on it for 8 years when I switched to Rebif for 3 years and neither helped much!
I have continually been getting worse and now have secondary-progressive MS.
Since Nov. 2007 I have been off of all shots completely and am followong Ann Borochs method while using Ambrotose (Mannatech) - highly recommended!
God bless everyone out there with MS and I hope you find what works best for you!
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:18:48
Member Answer/Reply:
Hello 52 y-o-f,
I am a 42 y-o-f and am curious about the, "Ann Borochs method and using Ambrotose (Mannatech)."
I was on Avonex for Secondary-Progressive MS, but had to stop the injections because of insurance problems. My neuro did not feel the benefits outweighed the side-effects. He does not seem to like Rebif at all.
Feel free to contact me by e-mail @ pthompson012@columbus.rr.com.
All of the people who have MS are in my prayers and those who have worse diseases. My husbands niece's husband has ALS (Lou Gerrigs...sp?) and is not doing well at all. Also, my ex-husband, my daughter's father, has Huntington’s Disease and will die from this illness...probably soon.
I am also wondering if you could help me with a question I have been wondering about. How does one with MS know when it is time for an electric wheelchair?
I would really like to hear from you.
Thank you for your time and listening to me.
43 year old Female – Source: iGuard
Posted: 2009-05-28 15:07:01
Question/Comment:
Hi everyone, I am Debbie. 48 yrs old and was just dignosed in Sept '08. One week before I turned 48. I was having so much pain and burning in my right leg and had gone to my regular dr often. She finally sent me to a neuroligist that specializes in handling MS. I love him to death.
I have optic neuritist right now. He sent me to an eye dr that specializes in MS patients as well. I have had optic neuritist for about a month. It came on so quickly. My vision started getting blurry and within a week I could barely see. They gave me IV steriods for 3 days to kick start the recovery time. It is not totally better yet, but I can see much better.
My neuroligist has me on Copaxone. I take 2700mg of Neurontin a day as well as Ultram 50mg a day for pain. I also take prozac& lamictial every day.
I am very fortunite to have great drs that work together and keep each other in the loop. I wish everyone with MS was so lucky.
I have not yet let this get me down. As a matter of fact I have even gone back to school to get an associates degree.
My next MRI will be in March, he said. I am eager to see the results.
50 year old Female – Source: iGuard
Posted: 2009-01-21 11:45:01
Member Answer/Reply:
GREAT attitude!! I have had only 3 relapses severe enough to make me admit to them. A cooperative treatment team is for me essential as I can be... difficult as a patient (I am an RN & a pharmacist). Last relapse I completed a doctoral degree & am about to begin as an MS clinical specialist. My family dr was diagnosed the same year as myself & has become a great force as she knows to "kick my butt" if I get hard-headed or feeling sorry for myself & between her & some folks @ NMSS calling just to check, I have had almost 10 years support & God sent help.
42 year old Male – Source: iGuard
Posted: 2009-04-20 08:38:37
Question/Comment:
To every one who has MS, how do you deal with the burning skin? my weak side is my left side, and my thigh feels like I have burned it. I can't stand to touch it or have any thing touching it. And to walk it is extremely painful. I hate steroids especially having them by IV.
Thank you for taking the time to read this.
T
44 year old Female – Source: iGuard
Posted: 2008-12-29 20:05:58
Member Answer/Reply:
I take 75MG Lyrica twice daily. It works for me. I can tell when I miss a dose. I have "phantom" pains like the burning you describe as well as other pains in many areas of my body. The Lyrica has been effective for almost a year now.
Source: iGuard
Posted: 2009-01-04 22:37:25
Member Answer/Reply:
I have the same thing happen. Temp. changes hurt realy bad. Cold is the worst and if it wet and cold. WOW the pain. I have not found anything that helps. Sorry and I wish you luck.
Kris
Source: iGuard
Posted: 2009-01-05 10:44:18
Member Answer/Reply:
Hi, I too have lateralized symptoms all on the left (optic neuritis, loss of grip, tinnitis, &c). My support group always teases me about being a stroke victim trying to fit in with them. I recently had Botox injections to control the spasticity in my left leg...a little rough the 1st day or 2 but I am now walking without my cane & even better, NO pain unless I drive myself to hard. I still need steroids periodicallly for my vision when it begins to blur but thus far it always comes back. If you are near an MS center they can really offer a lot of alternatives to just the drugs. I truly pray you find relief, I know that pain, no one really understands why since there is no visible injury but it still wrecks your life. For me attitude is 90% of wellness. Feel a bit lonely as females outnumber us about 4 to 1 so it's hard to find another male with which to commiserate. Again I wish you well.
42 year old Male – Source: iGuard
Posted: 2009-03-18 01:47:09
Member Answer/Reply:
I have been using blue ice gel (with menthol) for many years to ease the burning and it helps tremendously!!!!
You can even buy a cheap version at dollar stores. Mineral Ice is too expensive.
It helps to transfer from the jars to a pump bottle for easy application.
Hope this helps you!
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:24:37
Question/Comment:
I am on Tysabri. It should be listed as one of the medications used for MS.
50 year old Female – Source: iGuard
Posted: 2008-12-17 16:18:27
Member Answer/Reply:
I am 54 and on Tysabri also,was on Avonex for about 6yrs. then Tysabri for the last 8mons.with very good results. Tysabri has not been around long enough to know the side affects of other drugs you are taking along with it. Hopefully, it will collect enough info. to be listed. Good luck with Tysabri.
Source: iGuard
Posted: 2009-01-01 12:30:18
Member Answer/Reply:
Aren't you afraid of the death warnings associated with Tysabri?
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:20:21
Member Answer/Reply:
I am also on Tysabri I am going to have my 8th infusion this month, I think that its wonderful, I have had all tha ABC's and had very bad reation to them, I think God for this medication, I have not had any bad reaction to this new medication, and I have not had to this date a new lesions and my MS is staying study not better nor worse.
48 year old femal
49 year old Female – Source: iGuard
Posted: 2009-03-23 18:52:38
Question/Comment:
Hi,my name is Sarah, 43 female. I have been dx with Rhemumtoid for 11 years. Within the last 3 month's I have developed memory impairment, balance is off the hook, walking & running into walls, etc. I am so tired all the time I fall asleep constently. Ihave never been like that. I have always been on the go & not allowing my R/A to beat me. I went to a neruologist & which I also had an MRI done. Well the kicker here he said he found a few :liason" and he wanted me to go have a neruo-psych test done. That went ok, some areas are lower than other and some I am above average. Well this doctor is wonderful, went line by line through the test w/my husband & my self. He found over 30 liasons on the MRI that my neruo doc sent him. The nerup-psych doctor stated that it is leaning towards MS! He, also sent the findings to my neruo-which I see the 19th of this month. Also my ANA was extremly high, and he rementioned that to my neruo as well as test that he feels would be of great significate.
Any ideas, suggestions would be greatly appreciated!!!!!
Thanks,
Sarah
43 year old Female – Source: iGuard
Posted: 2008-12-14 14:44:24
Member Answer/Reply:
Hi Sarah,
I am a 45 yr. old woman. I was diagnosed with m.s. 8 yrs. ago. I just about pulled out in front of a car on my way to work one morning. I didn't see the car right away. That scared me, Thought I better go see my doctor. I did. Doctor was a regular physican. He told me I have m.s. he had me on several different meds, meds he had me on didn't help me at all. I was in a wheelchair, I went to a neurologist, he got me out of the wheelchair, I can walk now with the help of a cane.
Angela
Source: iGuard
Posted: 2008-12-20 22:40:01
Member Answer/Reply:
Hi Sarah. My name is Eva.(56 yrs) I was diagnosed with MS in 2004.. I go to an Arthritis swim exercise class 3 times a week and it seems to keep me moving. and help with the pains in the legs and neck and back. I take Avonex weekly injections for the MS, It took several months to get over the side affects from the medication(flu like symptoms) Istill have some side affects, but doing much better with that. It was quite difficult trying to hold a job feeling sick every Monday. Injections were done on Sunday. Now done on Monday. I no longer work but do go to class on Mon,Wed,Fri.. I had a cutomer service job for 26 years. I started forgetting how to do certain job functions that I had done for years..Good luck with your dx.
57 year old – Source: iGuard
Posted: 2008-12-30 09:51:17
Member Answer/Reply:
Am a 54yr. male also with ms, was on Avonex for about 5yrs. and could not put up with flu symptoms every week-end so my Doc switched me to Tsybri, an infusion done once a month, and having NO side affects.I highly recommend Tysabri to ms patients with side affects to other drugs. I'm working full-time , standing for 8hrs.,running a printing press with only slight speech problems finding right words. Highly recommend Tysabri to any one with ms and side affects. good luck with controlling any side affects.
Source: iGuard
Posted: 2009-01-01 12:54:41
Member Answer/Reply:
my yoga teacher has RA but it does not bother her if she does yoga everyday It is amazing.
56 year old Female – Source: iGuard
Posted: 2009-03-04 01:51:35
Question/Comment:
i was a self diagnoser ( have a Taber's medical dictionary that I baught back in 1993 when I was going to school for respiratory therapist) i STARTED HAVING PROBLEMS WITH MY VISION AND THEN WENT BLIND IN MY LEFT EYE. i GOT MY SIGHT BACK AND THEN ABOUT 3 MONTHS LATER LOST IT IN MY RIGHT EYE.i HAD TO GO ON THE WELFARE PROGRAM AND ALL i DID FROM THEN ON TILL 2002 WAS CRY! my sister called me a hypocandriac till I found a good doctor who agreed with me and after a long list of tests told me I was right. I never thought that I would be so sorry to be correct!!!! I was diagnosed with relapsing/ remitting MS in 2002 and I have been treating with rebif since then.I guess I should consider myself lucky that it's all I have wrong with me. I find myself feeling for others that hve to deal with a whole plate of illnesses that stack up on each other that make living a total chore. They say that God only gives you what you can handle and you are very strong people!!!!!
45 year old Female – Source: iGuard
Posted: 2008-12-11 11:41:46
Member Answer/Reply:
I'm a 54yr.male with ms also, was on Avonex for 5yrs. now on Tysabri for about 8mons., which I find an amazing drug helping to control the affects of ms. I'm working full time, standing for 8hrs. running a printing machine, and only having speach problems finding right words. Good luck with any meds you choose.
Source: iGuard
Posted: 2009-01-01 12:39:51
Question/Comment:
What is the MS Hug?
54 year old Female – Source: iGuard
Posted: 2008-12-09 16:04:39
Member Answer/Reply:
The best way to describe it is someone is hugging you so tightly that you feel as it is even hard to breath or even get a breath in ... it will pass within a few minutes. You'll seem as if it is lasting a lifetime when it happens, but it comes with MS. I found out that at a MS conf. in Dover DE from other people that have MS. You can also contact your local MS site for much more information. They usually have someone that can help describe things to you so that you do not feel as if you are loosing your mind over what is happening to you. Also, other people with MS are usually willing to give you their email or phone number to help you through some of the things that they already went through. Good luck and God Bless.
30 year old Female – Source: iGuard
Posted: 2008-12-18 11:55:24
Member Answer/Reply:
The poster below, explained "MS Hugs" quite simply & easy to relate to, but "MS Hugs" are actually SPASMS of the intercostal muscles (between the ribs), & they just suddenly CINCH DOWN on ya for no good reason, & it literally feels like all the wind is being squeezed out of ya, .. like when some big goof gives ya way too big of a "Bear Hug"!! LOL!! But the spasm does release in a minute or so. Just the nerves affecting the muscles like the spasticity of the legs, but around the rib cage! Hope this helps to understand what is happening with this?! I have them alot! And if I'm standing it just nearly buckles my legs as my entire upper body seems to spasm! YOWCHY!! But it passes! =:-D You'll be ok! Nothing permanent or damaging really. Just a BIG SQUEEZE!!!
48 year old Female – Source: iGuard
Posted: 2008-12-29 03:57:17
Member Answer/Reply:
I have these spasms in my chest area, they hurt so bad I want to cry, then I stay sore. When I talked to my Dr. he put me on a muscle relexant. Now I very rarely have the spasms unless I am very tires.
Sharon Spencer
50 year old Arkansas
51 year old Female – Source: iGuard
Posted: 2009-01-16 23:48:46
Member Answer/Reply:
The easiest way to describe the MS Hug is that it feels like a wide rubberband around your body, usually above the waist. Mine comes and goes, most recently, staying more than going. Hope this helps.
Source: iGuard
Posted: 2009-01-05 20:43:40
Question/Comment:
Hi Had the hug for many years (didn't know what it was),not till had truck accident and sent to hospital to find out had M S from M R I that was in 05,I am now 57 but Dr said I have had it for at least 12 years. Since then been seeing M S Specialist.Put me om Rebiff injections x 3 weekily.In one year new M R I shows no advancing.GOOD NEWS,Am on several meds.some for pain,attacks.insommia can't take any otc meds don't help at all.Legs are real weak at times,but other days walk witout cane. This is just something you have to put in your mind and don't let it take over your life. My family makes me walk, get out of house, do alot of things. This year family and I went to first MS walk-a-thon at our zoo,it was great to be outside, nice cool day. Just wanted to say good luck all all and remember DON'T LET MS TAKE OVER YOUR LIFE. BRENDA
58 year old Female – Source: iGuard
Posted: 2008-11-23 00:11:35
Member Answer/Reply:
BRENDA ~ TODAY WAS MY FIRST DAY CHECKING OUT THIS WEBSITE. SORRY FOR TYPING IN CAPS, BUT I WORK ON A COMPUTER 40 HRS A WEEK, AND WHEN I COME HOME THE EYES NEED TO REST. BUT I WAS DIAGNOSED WITH MS 4 YEAR THIS JUNE, AND BETWEEN WORK, FAMILY, AND STRESSED, SOMETIMES I FEEL LIKE MS IS TAKING OVER MY LIFE. I STAY BUSY WITH GOING TO SEMINARS, AND MS CHATS, AND I TO, HAVE DONE THE MS WALK FOR 3 YEARS. I AM ON REBIF, BUT I STRUGGLE TAKING MY SHOTS, BECAUSE MY INJECTION SITES ARE SORE AFTER AWHILE, AND WHEN THE WEATHER CHANGES. I DEAL WITH BEING ACHY, AND SORE. AND WHEN THIS HAPPENS EVERY SITE THAT I HAVE INJECTED FROM WEEKS AGO HURT ME, AND I DON'T WANT TO INJECT TILL I RIDE OUT THE STORM.
BUT I JUST STARTED PHYSICAL THERAPY, AND IT IS HELPING ME. BUT NOW MY HEALTH INSURANCE WILL CHANGE THE FIRST OF JAN. AND I FEEL LIKE I WILL NOT BE ABLE TO CONTINUE, BECAUSE I ALSO HAVE MASSAGE THERAPY WHICH ALSO HELPS.
SO I PRAY THAT I WILL NOT HAVE TO JUMP THROUGH HOOPS, AND WE WILL NOT GET INSURANCE CARDS TILL ABOUT MID JAN. SO I AM OFF SCHEDULE WITH THESE THINGS TILL I FIND OUT WHAT MY INSURANCE WILL ALLOW ME TO CONTINUE WITH.
THANK YOU FOR SHARING, IT MADE ME THINK :)
T
44 year old Female – Source: iGuard
Posted: 2008-12-29 19:57:06
Member Answer/Reply:
Hey! My doctor recommended something in lieu of PT that I want to tell everyone about. She told me to consider doing "AM Yoga" which is a Yoga CD by a man named "Rodney Yee" (The actual title is AM and PM Yoga). At first I laughed and said "yea, right" because all I had ever seen of yoga was someone sitting around cross-legged humming some sort of mantra. But as my physical ability went downhill I decided to try it. Well, I was pleasantly surprised. First it is just a program of gentle stretching which is very much like a physical therapy session and secondly it did help me. It is only 20 minutes long so time is not an issue. At first I couldn't do much of the exercises (not because they were difficult, but because I was in such bad shape), but I kept on trying and now I can complete the entire 20 minute session without having to stop or skip and parts. For anyone who cannot get physical therapy I strongly recommend talking to your doctor about using this yoga. I bought my copy at a local discount store for under $20. There are additional sections (PM Yoga and another one) but I only use the AM Yoga. For Christmas this year I received Rodney Yee's new CD called "AM Yoga for Your Week" ... it is similar but it more difficult for me to do. If you are able to do that one it is probably good too.
50 year old Female – Source: iGuard
Posted: 2009-01-19 12:59:50
Question/Comment:
Does anyone else here have the dreaded, "MS HUG?" If so what do you do for it and does it help?
I have had it constantly for almost 3 years now. A couple of times it has been so bad that I cannot take deep breaths and end up hyperventilating, and possibly pass out for a little while. Some days are A LOT worse than others, but all I take right now is either Extra Strength Tylenol or 2 Coated Aspirin. Neither one gets rid of the pain, but they make it a little more tolerable.
Thank you, in advance, for your feedback.
Jane T.
43 year old Female – Source: iGuard
Posted: 2008-11-18 13:20:05
Member Answer/Reply:
Hi Jane,
I was diagnosed with transverse myelitis which has now been changed to MS. TM and MS patients get the "hug" feeling. Yes it can be distressing at times, I take both neurontin and baclofen. Which has helped me a lot. If I try to over do it then the hug feeling comes back but after I get rest I'm fine.
Have you tried either of the 2 meds I mentioned? I ran out of 1 of them and my hubby couldn't get to the pharmacy till the next day and I felt like I had a tight girdle around my rib cage.
Hope this helps you,
Jennie
48 year old Female – Source: iGuard
Posted: 2008-11-19 03:47:31
Member Answer/Reply:
HI jane, my name is my name is gretchen. I just read your post from 11/19/08. Now I know what it's called. that feeling I get, "THE hUG". i Too take nuerontin and baclofen, in addition to afew others, but I just started these drugs. I was a little nervous at first. I also get bad spasms in legs and most mornings i can't move legs. I usually roll out of bed. My husband is afraid, because the other day, I was feeding our dogs and legs just gave out. poof. I was on floor.. Just curious, I was diagnosed woth Idiopathic Macular Degeneration at 26, blind in left eye and just spots in vision in right, due to laser. anyone else out there with vision problems and M/S? Please let me know. Curious thing is, I had 2 great uncles pass away due to M/S and one cousin is in wheelchair now. any comments on genetics?
48 year old Female – Source: iGuard
Posted: 2008-11-29 03:21:39
Member Answer/Reply:
YES ALL THE TIME BRENDA
58 year old Female – Source: iGuard
Posted: 2008-11-23 00:14:49
Member Answer/Reply:
I have the MS hug every once in a while. I find nothing but time makes it go away. Sometimes I will go for months without it bothering me, and sometimes it just won't go away.
56 year old Female – Source: iGuard
Posted: 2008-12-01 13:16:10
Question/Comment:
i have had BELLS PALSY like 10 times -i always said somthings wrong -mom said doc said i have a under developed spinal cord -i learn this during 8yrs when i was having open -heart surgery inwhich i was given a bad blood trasnfussion sooo i have been on that real familiar PEG -INTERFERON FOR 2 YRS for my liver
now wirth hep c cleared out of my liver ((antibodies anyway)) another virus appears??
a MRI ON FRI OCT 22 an they tell me i have MS!! i am 49 an i am so tired an i am scared an i dont have no friends but my Randy of 16 yrs an he is a diabetic whos going blind an i thought i would be able to love an take care of him...whooo wait i will take a breath -i dont know what to expect -my bones hurt bad but the pain is my neck n shoulders with real sharp pain when i move -my ear hurts an ..i am geting a second opinion -I CANNOT DO ANOTHER DAY OF INTERFERION NOT ONE -I have cryed for 4 days an i cant stop i feel selfish an alone -i am already on 9 meds -Does lyrica help anyone??
sablelulu
51 year old Female – Source: iGuard
Posted: 2008-11-04 20:47:46
Member Answer/Reply:
You are not selfish or alone. I have all the symptoms you describe and am also 49, almost 50, female, and sure know what it is like to cry. Sometimes you just have to let it out, and it hurts too damn much to scream. My left shoulder, upper arm, neck are the worst, but I have found a great accupuncturist that is giving me a lot of movement back and with constant care in the beginning, at least once a week, will help soooo much with that pain. Eventually she moved on to do the whole body. Then my husband ended up in the hospital, seriously ill and is still there so I have had to cancel all appointments and the pain is right back and all over again. If you don't have this disorder, you don't understand the pain, and even other patients with MS don't feel the same symptoms all the time. There are even dr's that insist that MS patients don't feel pain. I've run into them! Some days I can be on my legs for 5-10 minutes, other days I can't get out of bed. Usually I use a wheelchair now. I have been diagnosed for almost 3 years and they feel I have had it for over 30 years. I was a battered woman for years before my current husband and just thought all my problems stemmed from that, LOL, fooled me. Just hang in there, fight for the proper meds, get your MRI's, and find a dr that will work with you. They don't all have the best bedside manner, but there are good ones out there that specialize in spinal cord injuries and MS. Good luck.
50 year old Female – Source: iGuard
Posted: 2008-12-06 23:20:25
Member Answer/Reply:
I have just gotten my shots. I'm so nervous to get the shots. I keep asking..What will I feel like? I'm stay tired now achy sholders neck and burning eyes. I have achy legs too. Now I'm suppose to inject myself and get other symptoms as well.... scared
39 year old Female – Source: iGuard
Posted: 2008-12-12 19:19:08
Question/Comment:
I AM 58 YEARS OLD WITH MS. HAVE HAD IT FOR 15 YEARS. I STIIL WALK (WITH A CANE), STILL DRIVE. I AM TAKING NOVANTRONE IV (CHEMO DRUG). BEEN ON IT SINCE 2001 AND HAVE THREE QUATER DOSES LEFT. I AM FINE. HOPE I STAY TIS WAY. GINNI
59 year old Female – Source: iGuard
Posted: 2008-10-22 15:15:04
Question/Comment:
Hello,
I'm telling you that you can fight this terrible disease. I have had ms for about 5 years now. At that time i was in shock when i heard the news. My mother has had ms since she was 21 years old and is now 82 years old and has had 10 children. So i feel that if my mother can fight so can i. I'm not working at the present moment, but plan to go back to work part time. That is the hardest thing to do, expessily when you have to do a career change. I was a hair dresser for 20 years. I am now 54 years old and still have trouble with my balance. But we have to work hard to keep walking because once you stop, thats it. So please read all information about ms. Join the MS society in your community. It will help. There is a magazine the MS society puts out MOMENTUM for free. I also get on the internet with others that have the same problems that i have .. I thank the lord that i have my mother to talk to about this... I have to laugh because when we talk and i ask questions about how she felt in the beginning, she can't remember. The we both laugh. Keep smiling and keep your head held high for some day soon they will have a cure.54year old female
56 year old Female – Source: iGuard
Posted: 2008-07-18 17:57:18
Member Answer/Reply:
i was so glad to read your article i was diagonsed w/ms at 26 i am now 30 i get so sick of people telling me oh i am so sorry or you have a long way to go not very encouraging and then to read your mom's age and how she is it is great i do have three kids now and sometimes i do think am i really gonna make it i seem so tired all the time i guess all any of us can do is not let the ms get the best of us!
31 year old Female – Source: iGuard
Posted: 2008-11-14 22:16:57
Member Answer/Reply:
STOP and talk to your Social Security Office RE: Disability! If you go half time you will cut your disability claim in half when you need to quit work completely! I made this MISTAKE! Now I am living with a meager $720 a month from SSDI and you can get it back. Once you go half-time for more than six months! My so-called boss knew this when she offered me the part-time idea. I have regretted it ever since. 40 yr vet of MS, 58 yrs. old.
Source: iGuard
Posted: 2008-11-21 15:23:42
Member Answer/Reply:
I, too, am glad for your post about your mother and you. I am from a family who has a history of the women living to 100... and this may sound silly but before the MS diagnosis I always had a goal of living past 104 to beat my oldest living ancestor (silly, I know.... but, hey we all have goals!) Then MS hit and I went through a year where I doubted I could live to 50 (which will be in about 9 months!), much less 100! This is a disease that slows you down so much! I know I have to keep on pushing but I just would like to have assurance that I can make it! So reading about your mother gives me more of that assurance!
I don’t have any (known) relatives who had MS but have a G-grandmother who was blind and struggled to walk… maybe MS… who knows? What worries me most is the available drugs. Does your mother use any of the interferons or anything? Do you? I worry about how safe it is to use these for long-term. And my doctor is talking to me about Tysabri--- which is VERY SCARY! It has only been out 2 years so there is no history of long-term use for it. Do you ever worry about things like this? I wish we had a gigantic database of all of the patients with MS and what had been most helpful for each of them!!!! (Pie-in-the-sky dream… I know!) But it sure would make thee types of decisions easier!
I am a high school math teacher and am afraid that in the next year or two I will have to change careers… my mind just doesn’t stay focused as it should and I think I may start to ‘hurt’ the student’s education more than help it. That is a very sad thought and one I struggle with, so I know what you mean about changing careers.
Once again… thanks for your post about your mother and if you (or anyone!) can offer ideas to help me, I would greatly appreciate it!
Sandy
50 year old Female – Source: iGuard
Posted: 2009-01-19 13:15:09
iGuard Answer/Reply:
You wrote that your mind doesn't stay focused as it should. Having had SIGNIFICANT memory loss beginning from the age of 35 ... when I couldn't even remember my husband's first name, I struggled with simple vocabulary, I felt insulted when my doctor handed me a pamphlet on memory loss and aging.
An e-mail was sent to me regarding memory loss and other symptoms, including all MS symptoms, that people have experienced as a result of consuming Aspartame. Please hear me out.
I had for three years been consuming, on a daily basis, one to two one-litre bottles (up to two quarts) of flavoured water, sweetened with Aspartame. The e-mail stated that when Aspartame was eliminated, the symptoms diminished. (Yet Snopes.com claims this is false.) My personal experience is this: I cut out the flavoured water and my memory, my ability to remember simple words returned!
For what its worth, and life change that you are now experiencing, have you tried the option of eliminating Aspartame from your diet?
Posted: 2009-03-18 11:42:51
Member Answer/Reply:
I've had MS for 22 years and was pretty good for 10 years, and then....
If I continue to have the extreme pain I've been having in my left arm and hand (so bad I can't sleep or grip to walk), I hope to God I don't live to 82! And that's on top of all the other pain and weakness and no coordination - oh, and let's not forget continuous incontinence because my bladder can't retain any amount -
NO, if I can't heal myself (which I'm now doing naturally) than I Do NOT want to live a long time.
However, I have hope and faith - you have to!
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:51:42
Question/Comment:
I am in the process of being diagnosed, I am extremely frustrated I have several dark spots on my brain but they are not "sparking" with the dye. My doctor says they are old, and she needs to have a new lesion that has current activity in order to clinically diagnose me even though when I had the lumbar puncture that came back positive for MS also, not too mention she also diagnosed me with optical neuritis wich also goes along with MS, so why can't she just diagnose me with MS and start the treatment already. Can anybody give me an answer to this? I am having another MRI at the end of the month that will include my brain as well as cervical and thoracic part's of my spinal cord, so hopefully she will find what she's looking for. Please HELP!!!
36 year old Female – Source: iGuard
Posted: 2008-07-12 10:24:27
Member Answer/Reply:
Please take my advice...
A second (good) opinion can be a life saver.
Have your PRIMARY DOCTOR get you in to see a MS SPECIALIST in your area.
(I really advise a MS Specialist instead of a regular Neurologist.)
Go to them atleast for the second opinion. With this disease you really need that. I'd say even for a peace of mind, but you also need it for your health!
Call your primary doctor this week and get another (yes, sometimes dreaded) opinion soon!
"PRESS ON."
31 year old Female – Source: iGuard
Posted: 2008-08-26 00:00:53
Member Answer/Reply:
DITTO!
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:54:24
Member Answer/Reply:
Hi. I feel your frustration. There are so many rules of thought on the diagnosis procedure. I help run an MS support group, and we hear all this stuff. Is your doc an MS Specialist?
57 year old Female – Source: iGuard
Posted: 2008-09-18 14:50:27
Question/Comment:
I am newly diagnosed with MS and my MRI showed 2 dark areas so far. I am in pain and right now I am on Neurontin 300mg 4x a day and pain pills.
I see the neurolgist for the first visit tomorrow. I have 7 grown children and a 4yr old daughter that asks me each day if I am over being sick yet, so we can go BACK to the PARK and PLAY again?
I am in pain but the Neurontin I just began taking seems to be helping me more each day. Hopefully I can do more things someday with my little girl soon.
I am 44yrs old and I try to smile but Depression seems to overwhelm me easily with MS and not knowing what the future holds.
46 year old Female – Source: iGuard
Posted: 2008-07-08 23:49:59
Member Answer/Reply:
I have terrible tingling in my back that drives me up the wall...
I'm also on Neurontin/Gabapentin and my doctor has (thankfully) up'd my does to
900MG morning
600MG noon
600MG evening
Maybe ask your doctor about upping your dose of this as well.
I don't have the "pain" but I have the tingling and it helps tremendously.
Also, my doctors kept on me for almost a year to get on Lexapro and I refused.
When I finally surrendered (LOL) I thank them every single time I go in.
I can also see a big difference in myself...
It helps, it helps, it helps! Not to get OVER IT but to get THROUGH IT!
"PRESS ON!"
Phil: 3:14
31 year old Female – Source: iGuard
Posted: 2008-08-26 00:09:01
Member Answer/Reply:
I also have MS and also take 2700 mg gabapentin. Does help the pain from absolut unbearable to bearable!!!
But I am gaining weight rapidly. Like 21 lbs in 2 months. Do you have weight gain as well? You finally think yea this is working and now you have another problem!
What is Lexapro?
I love your "PRESS ON"
49 year old Female – Source: iGuard
Posted: 2009-01-07 20:40:01
Member Answer/Reply:
I have recently been diagnoised with MS.Feb "08". My foot went to sleep @ work (pins & needles) and within 24 hrs it covered both legs to just below my beasts. All pain peels & all shots it still feels the same as day 1.
I am taking gabapentin 300 mg 3x's a day., help's burning only
I give myself ReBiff shots m/w/f 22mcg it goes up to 44mcg next week. so it won't progress any further
I also take 75mg Amitripoline every night. for pain
I take lamictal & prozac.
I have been told my MS will never leave and to get used to it. All that can be done i s to manage the pain. So I am asleep waist down. pins & needles nothing has helped
50 year old Female – Source: iGuard
Posted: 2008-09-26 18:11:36
Member Answer/Reply:
dragon10001@vriezon.net I have the same problem that you have. I live on pain pills everyday. There are times when that doesn't help. I was diagnosed on aug 10 2006. I go to my nuerologist every two months. It is nice to know that there is someone out there that has exactly what I have. I know I will end up in a wheelchair as sometimes I have to use one. I use a walker most of the time now. Would love to hear from you!
57 year old Female – Source: iGuard
Posted: 2008-10-30 14:35:07
Member Answer/Reply:
dragon10001@verizon.net It is finally nice to hear that someone has exactly what I have! I was diagnosed Aug 10 2006. I have been seeing my neurologist every 2 months. I use a walker on my bad days that I can't get my legs to work right. Otherwise I can use a cane. It seems I am using my walker more every day. Iknow I will never get better but it is nice to know someone has what I have.
57 year old Female – Source: iGuard
Posted: 2008-10-30 14:55:08
Question/Comment:
I have a lot of the symptoms of MS. I have no health insurance. How do I find a doctor that will send me for an MRI to confirm what I am almost sure I have, I am getting very depressed and I do not know what to do.
Female- 43yrs
45 year old Female – Source: iGuard
Posted: 2008-07-04 09:26:01
Member Answer/Reply:
Hello: I feel for you as I had a real tough time getting an MRI and had to go to many doctors. Until I finaly met a female doctor. Do you have medicaid or medicare? Have you filed for disability? Search the web until you find something. I'm sure there is help for you out there. Keep the faith!
56 year old Female – Source: iGuard
Posted: 2008-07-09 05:20:51
Member Answer/Reply:
Contact the MS Association of America they have a program that will help pay for your MRI.
34 year old Female – Source: iGuard
Posted: 2008-07-24 16:58:29
Member Answer/Reply:
All states have low cost or free clinics, search for one in your area and be persistant when aking an appointment,
Good luck to you
53 year old Female – Source: iGuard
Posted: 2008-08-11 15:03:40
Member Answer/Reply:
I found this link for you http://www.freemedicalcamps.com/index.php good luck
53 year old Female – Source: iGuard
Posted: 2008-08-11 15:42:40
Member Answer/Reply:
You need health insurance if you have MS. The treatment and doctors visit will bankrupt you if you don't get health insurance. If you have to get government health insurance then do it and don't waste any time. That is what I did. The MRI without insurance is $3,000 my medication monthly is $1,500 the neurologis visit is $1,500 and this does not include the labs. If you are not working or not working a lot of hours and not covered by insurance go to your local food stamp office and they will give you the paper work to get the insurance.
Source: iGuard
Posted: 2008-08-18 11:44:29
Member Answer/Reply:
Please contact the local chapter of the National Multiple Sclerosis Society, they will help.
Source: iGuard
Posted: 2008-09-28 12:11:43
Member Answer/Reply:
Have you tried getting Medicaid from your local social services dept. You do not have to be on welfare to qualify for it. They also have an insurance that you can get at a very low cost to you. You can also qualify for medicaid if you already have insurance through work yours or a spouses, it will cover the co-pays etc that can add up and swamp most people earning an average to moderate income much less those who earn less.
Unfortunately most doctors are out for the big bucks and tend to leave the people without insurance behind and in my opinion some of the ones without insurance are the ones who could benefit from medical care.
Peace to you
Jennie
48 year old Female – Source: iGuard
Posted: 2008-11-19 04:00:21
Question/Comment:
I have knowingly had MS for 19 yrs. I don't think I would be doing very well without Avonex. My relapses are few and lite. I have had my time in a wheelchair, several years ago. My bigest problems are Cognative, with minamal physical problems. I have MS, but MS doesn't have me.Think posiative.
53 year old Female – Source: iGuard
Posted: 2008-06-17 16:40:59
Member Answer/Reply:
I am a 54 year old female and I don't know when I got MS but I was told by my doctor last year and he put me on Copaxonex and I had to get off of it because I had a reaction to the medication. So he then put me on Avonex and so far so good. But I still have a problem with fatigue and balance I am now walking with a cane to help with my balance. When I go shopping with my husband I want to sit in a wheelchair or motorized wheelchair but he makes me walk around the store and when I get home I am in so much pain I can't stand it. Question: How do I get him to see I am in pain when I have to walk a lot which is not good for my joints and back. I feel the same way " I have MS but MS doesn't have me. You go girlfriend and good luck to you and yours.
56 year old Female – Source: iGuard
Posted: 2008-07-09 01:21:19
Member Answer/Reply:
I'm don't how long I've had MS it's so hard to diagnose but in 2002 they did a MRI found out for sure and I've been on Avonex since then. I also walk with a cane and fight dizziness but when I went to the store I would use a push cart and put up with the pain and people asking me if I was OK. I would feel beat clear through the next day some times. I hated to go to the store. I went a couple of weeks ago and the greeter kind of pushed me into using a cart my husband was with me. I had so much fun when we left the store my husband said we have to do this more often I haven't seen you smile that much in a store in a long time. Long story short there are better ways to get excercise!
56 year old Female – Source: iGuard
Posted: 2009-01-16 14:30:21
Question/Comment:
I have a 57 year old sister that has had MS for 13 years. She is in 4th stage. It hit he bladder and her spine.
She can no longer walk, is in an electric wheel chair, soon to be bed ridden I am afraid. She is in an assisted living center at the moment, will be transferred to nursing home when she finally is confined to bed.
She is in so much pain all the time, taking oxycontin and oxycodone, gabapentin, effexor XR all for pain. She was told my her Neuologist that there was nothing more they could do for her.
I have become her advocate and go to her doctor appts with her. She cannot keep thing straight in her head, I don't believe it is just her medications. She has memory loss but then a lot of us over 50 do...lol
I love he so much and am so concerned she will not wake up one morning. But perhaps that might be a blessing for her. She cannot move either leg, they are both numb, she has lost the use of her left hand and she is left handed. She is no longer salivating, she has to get her throat stretched about every 6 months so she an swallow.
There is no quality of life for her, but I will visit her everyday to make her feel loved, make her laugh and smile and hopefully she will have a few days where she does not cry. I just want her to enjoy what time she has left. Her blood pressure drops to 90/50 and lower. They have woke her up in the morning with blood sugar down to 40. I have no idea how much time she has, but am working my bottom off to get her the help she needs to live a semi normal comfortable life.
I wish you all peace, less pain and send you all love, you are all very strong women to struggle with this horrible disease.
56 year old Female – Source: iGuard
Posted: 2008-06-13 17:06:55
Member Answer/Reply:
You might want to visit this web sight : Patients Like Me MS. They have an online community that is so helpful and there are so many good people to talk to that understand everything you are going through
34 year old Female – Source: iGuard
Posted: 2008-07-24 17:03:36
Member Answer/Reply:
Check out Ann Boroch's book on healing MS and the webite on Victory over MS.
I wish her all the best. That damn pain is the worst!
53 year old Female – Source: iGuard
Posted: 2009-03-21 15:59:52
Question/Comment:
Can we please get off this MS rollor coater ride now??? I have had enough.
42 year old Female – Source: iGuard
Posted: 2008-05-06 17:48:11
Member Answer/Reply:
Please check out 'HEALING MULTIPLE SCLEROSI' by Ann Boroch.
and Victory over MS website.
53 year old Female – Source: iGuard
Posted: 2009-03-21 16:06:55
Question/Comment:
having this disease stinks
36 year old Female – Source: iGuard
Posted: 2008-04-29 01:51:21
Member Answer/Reply:
amen to that
39 year old Female – Source: iGuard
Posted: 2008-05-04 18:47:05
You may post comments for the benefit of other patients or post questions other patients might be able to answer. Comments are submitted for possible publication on the condition that they may be edited. Only your age and gender will be published with your comment, although your other user details will be securely recorded for verification purposes.
Comments may be either questions or answers to previously posted questions. Any iGuard user may post questions and reply.