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.

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

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

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

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

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!

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!!!

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."

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?