Comments: March 30, 2009

 

 

I used to experience the MS Hug as well but since I have been on Prokarin for the past 12 years (12 years in February 09) I have not had another episode of it.

You may also have some good input & suggestions for me.  I am a 40 yr old male — married with two young boys.  I had some questions and wanted to share my symptoms and tests results (all of which are basically showing negative and so far—no diagnosis) to get some feedback on how you would proceed.  All suggestions are helpful in determining what to do when a diagnosis is not being given.

BT

 

Response:

 

Yes, you may send me your test results if you like.  Please remember that I am a lay person with MS.  I am not a medical person.  But, I will give it my best effort to assist you. 

 

Was your MRI of your brain or you spine as well?  Many MRI’s as done of only the brain where there may not be lesions.  An MRI done of both the brain and the spine is much more definitive of MS.

 

 

 

Maestro MBP8298 – new drug on the horizon

Is MBP8298 being used for primary progressive patients?  How does one find out if they are in a DR2 or DR4 subgroup?  Please let me know asap. 

Thanks

DD

 

 

Response:

A Double-Blind, Placebo Controlled Multi-Center Study To Evaluate The Efficacy And Safety of MBP8298 In Subjects With Secondary Progressive Multiple Sclerosis

Have been diagnosed with Primary Progressive MS or Relapsing Remitting MS

 

 

Comment:

I wish I had something wonderful to tell you.  I also experience this hug frequently, though it does come and go.  I cannot imagine if it never left!  I use massage to help ease the spasm when it is occurring, along with some type of muscle relaxer (zanaflex) or perhaps a flexeril.  Most anything that will knock me out for a few hours until the pain passes.  I did read yesterday that the MS hug is well known in Chinese medicine and that someone has successfully used acupuncture to lessen the frequency and severity of hugs.  So, I know this may not be your solution and is perhaps info you have heard before but I couldn’t see passing you by without at least mentioning it.

 

Response:

 

Thank you for your comment.  I will look in alternative medicine for the MS Hug.  If acupuncture works for someone then I think they should use if, by all means.  Use whatever works. 

 

 

Hi Bonnie –

I am a 34 year old man that has had MS since 2005 I have taken Avonex, Betaseron, and am now on Novantrone.  I have been DX with aggressive case of MS.  My coordination, strength endurance, and intellect have deteriorated measurably.  I was accepted into the HALT-MS program in October for the Stem Cell Transplant.  However CIGNA has repeatedly held up my appeals saying its experimental.  I am looking for help and was hoping you my be just that.  I have a wife and a 3 ½ year old daughter that I would love to be around see grow up.  The writing is on the wall for me and this is my only hope to live a generally normal life.

Thank you and look forward to a response as time is not on my side. 

 

Response:

 

Can anyone tell me what CIGNA is.  I am a Canadian and we don’t have CIGNA up here.

 

I truly hope that A Stem Cell Transplant is your answer.  I have heard of remarkably successful transplants in Canada.

 

 

 

Comment:

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 cancer tumour on my right kidney, so two years after my spinal cord surgery, I had the tumour, right kidney, and 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; I tried taking 10mg 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 10mg 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, and 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. B.

 

 

Response:

 

Another medication that is used for spasms is and has some success is:  Gabapentin 300 mg capsules.  Gabapentin makes some people very sleepy so it is suggested that one takes two at mid-day and two at bedtime.

 

Good job! I’d like to know if you’d be interested in having me as a guest writer for your blog.  I am a features writer.   I’d like to write a free 300 to 400 word blog entry for you.  I have a few years experience and would really enjoy writing one or two guest blog entries for your blog.  If you’d like to take me up on my offer, please send me a topic and a quick outline of what you’d like the article to say.  Please give me as much detail as possible so I can make the blog entry meet your specifications as much as possible.  In exchange for this free blog entry, I would like to request a linkback to my blog in the body of the blog entry somewhere using.  

MB

 

 

Response:

Thank you for you for your email.  I do not let anybody else write on my blog.  I like to have total control.  Nor do I advertise other websites or blog on my blog.  Neither do I link to other blogs. 

Bonnie