Here is S’s story.

Dear Bonnie,

I want to thank you for your MS site; its the first time, I have read such a complete list of problems and possible solutions.

Please be patient, as you read my case history; I have been healthy my whole life; I taught special education, I had 2 natural childbirths, and a hysterectomy; then my world fell apart in 2004.

I had spinal cord surgery at age 54; I had a wonderful thoracic spinal surgeon who saved me from being a quadriplegic; I  had a thoracic disc that had calcifed and perforated my spinal cord; this is rare, and most surgeons do not want to risk even trying to save your life;  but my surgeon had done this before; he removed the calcified disc, and replaced the bad disc with a titanium cage; he is the only surgeon who performs this unique surgery;

Then, after a urinary tract infection, which is common after any spinal surgery, I saw a urologist, and I had a cancerous tumour on my right kidney, so  two years after my spinal cord surgery, I had the tumour, my right kidney, and my adrenal gland removed; no complications from surgery.

Its been 5 years since my spinal surgery and 3 years since my cancer surgery; my cancer has been in remission, I go for a check-up every 6 months.

After the cancer surgery, I did not feel the same; I could not walk in the heat, as I could do after my first surgery;  I was walking each afternoon, even when its 99 degrees in the sun; but after the cancer surgery, I felt severe heat sensitivity and had a spinal tap; it was negative; I did have several MRIs, and there were 2 lesions on the upper cervical spinal cord; my spinal surgeon thought I had MS; but my MS doctor said, it may be benign MS, since my spinal surgery had traumatized my spinal cord; my spinal cord surgery took 12 hours;

Now, 5 years after the spinal surgery, since October 1, 2008, I have felt the MS hug, everyday, 24 hours a day; its like an engine that started on its own, and it never gets turned off;  so, I called my spinal surgeon, since there is no one in the US who really deals with primary progressive MS; and since my 2 lesions are at the top of my spinal cord, it has been documented, the location of the spinal cord lesions, will cause damage below that location--hence, cause breathing respiratory problems.

For me, the MS Hug effect, came out from nowhere; I had no real warning; Itried taking 10 mg of Baclofen and one xanax , three times a day; it did not help; I cried alot, since crying helps my autonomic nervous system work better; I also drink hot tea, and I stand in the shower since the steam seems to help me breathe easier;  now, I have been taking 10 mg of Baclofen and one xanax, four times a day; I feel better, but  I do not sleep very much; the Baclofen does not make me drowsy; it seems to keep me awake; so I sleep 3 hours a night; 

I have researched England, Canada, Sweden, Israel to find anything else to try, to help me breathe easier; the possible new drugs, have been tried in research studies but were not successful;

After I read your personal story, and the reference to how your rib cage felt, when you did feel the MS Hug effect; I knew, I am the rare person, who has this terrible symptom, non-stop;  I live in the US, so I have a living will; I will not be put on a respirator, or trach tube or feeding tube; I will probably get pneumonia and die from this; I  walk slow, but I have use of both arms and legs; I have no lesions in my brain, so I have no cognitive problems at all; so, now, after surviving 2 major surgeries, I have a severe non-stop MS Hug symptom, and its been almost 3 months, feeling like I have a boa constrictor around my chest.

I did contact the Rocky Mountain MS center in Colorado, which does treat patients with PPMS, but they told me, not to waste my time and money to fly out to their center; they would just suggest Baclofen.

If you hear of anyone, who has other suggestions, or treatments, for severe MS Hug symptom like me; please let me know. I would go to see anyone; if they could help me.  Your website is great.

Sincerely,

S