Posted by: Thixia | December 2, 2008

MS Hug, pain and discomfort

Dear Readers,

 

Another reader needs your help.  She is in severe discomfort and needs your assistance.  Please help.

 

She is suffering from the MS Hug.  Here is her story.  What solutions have you found for the MS Hug?  We need to know.  We need to stop this from progressing further, eventually causing her death.

 

HELP!

 

Send your comments to:

 

ms.comments@AllAboutMS.ca

 

I am thanking you in advance for your suggestions.

 

 

Bonnie

 

 

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; I tried 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

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Responses

  1. 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 accupunture to lessen the frequence and severity of hugs. S, 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.
    Best Wishes,
    Lelia

  2. Thank you Leila. I did not know about accupuncture for releiving hugs. I will look into it.

    Bonnie

  3. Have you looked into Bowen technique? It is non-invasive and gentle. After having tried a number of other therapies – and muscle relaxants and finding no relief, I had wonderful success in eliminating back and neck spasms – (which caused painful shallow breathing not unlike the MS Hug). I am not sure if it would be as effective in your case since your spinal lesions may be the trigger. But the brain is plastic… it can change and adapt – it sometimes just needs a nudge in the right direction.

    http://www.bewellnow.ca/bowen.html This will describe it better than I can.

    Strength!

    Serina

  4. I have an answer for you…perhaps THE answer. I, too have MS and suffer from the MS hug on a continual basis. I have been amazed at how many MS sufferers have never heard of it. Even some Dr seem to not know what you are talking about, so I guess it stands to reason the information is scarce. Gabapatin (Neurontin) helps quite a bit and so does massage. However, the one thing that has saved me is marijuana. Small doses is all that is needed to get those muscles to relax and the pain to abate. It has been a lifesaver to me. Hope it helps you, too.

  5. I hope someone is still checking these comments for S. Although I have no doubt that marijuana would help prevent this and other muscle spasms in general, for those of us living in states where it isn’t legal I have an excellent suggestion.

    I experience the hug from time to time even on 80 mg of baclofen a day. Valium (diazepam) is a godsend. When I feel the hug start I take one before it becomes unbearable. If that doesn’t help I will take several, sometimes with some hydrocodone. In the past I have gone to the ER for a severe episode when I just could not take the pain anymore. What did they do? Valium straight to the bloodstream plus hydrocodone. It ended an unbearable 4 day long ms hug within 45 minutes. Get a prescription for a significant dosage – I haven’t found anything else that can compare. Some people will give you suggestions about visualization, pressure, heat, massage. These may work for you, but nothing will work like Valium. Good luck to you.

  6. I have just read other posts re ms hug I would like to say I have had it over a year now and it kills me the pain is un bearable now. Wish someone could help me

  7. I WAS DX IN 1984- LAST MS EXACERBATION LEFT ME WITH PROGRESSION OF BRAIN LESIONS- PROGRESSION IN THE CORPUS CALLOSUM AND THE RIGHT FRONTAL LOBE- MANY LESIONS HAVE ENLARGED- I NOW HAVE SEVERE CERVICAL AND SPINAL PAIN- I DO NOT LIKE TAKING PAIN MEDICATION WHAT ELSE CAN I DO FOR THIS PAIN? THANKS- BILL

  8. Hi Bill,

    You could try acupunture, exercise, and physciotherapy. But, remember if pain medication gives you a better quality of life maybe that might be the answer.

  9. I was plagued with unbearable hugs that would last for weeks. I quit caffeine completely which helped reduce their frequency and use diazepam (Valium) to head off the hug as soon as it starts and treat it while it continues. I keep Hydrocodone on hand to prevent ER visits.

    Cutting out caffeine has helped tremendously.

  10. You could try accupunture and or physiotherapy and or message.

  11. Hi my name is maggie I have ms And have had the ms hug 24/7 since 2009 have tried so many things acupuncture and drugs but nothing helps I have had a recent MRI awaiting results the pain is horrid and it affects my balance

  12. I need to know how to help it, my girlfriend is suffering from it for years now since she was little………please help, thank u

  13. Regarding the MS hug, trigger point therapy has helped me the most in the past and is administered by a therapeutic massage therapist; also I have found homeopathic remedy to help some; in my case it was arnica montana 30c but it is best to discuss your case with a licensed homeopath. The MS hug has gotten worse recently and I have just this week sought the help of a chiropractor recommended by others since the MS doctors have not helped me.


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