arm pain - will it help?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

arm pain - will it help?

Postby bruce123 » Thu Jul 22, 2010 6:46 pm

My wife has progressive MS. Among with many othe MS problems, she suffers from a terible burning pain in her right arm. What is strange is that this pain comes on quickly and lasts about 1 hour and then is gone. This happens 2-5 times per day. None of the doctors we have consulted have ever heard of MS pain that comes and goes regularly, a number of times per day.

She has suffered with this for the past 4 years and has tried about 20 differant drugs, most being anti-siezure drugs. She has also tried accupunture and TENS. Nothing helps much.

She is on the waiting list for Albany and we're wondering if anyone else has this type of pain and if we can expect (hope) that the Liberation treatment could aleviate this recurring pain?

Bruce.
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Postby SandyK » Thu Jul 22, 2010 10:38 pm

Hi Bruce. I had that pain. It really was like my arm was burning from the inside. I was told it's called Neuropathy pain. No pain killer ever touched it. As a last resort we tried steroids and it worked! That was over two years ago and I haven't had it since.

I have not had Liberation yet. My time will come.

Good luck.
Diagnosed 1994, Self EDSS is 6.5
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Postby ErikaSlovakia » Thu Jul 22, 2010 11:32 pm

Hi bruce123!
Pain in my right arm started in 2005. Just as you describe it. A neurologist gave me Carbamazepin in 2007. I had to learn when to take how much but after 3 months my pain was under control. I just did not like the side effects but better than the pain. I have been taking 1200 mg until "8 months after the procedure".
I had been trying to take less all the time but only 5 months after the procedure I was taking 900mg, 6 months after - 600 mg, 7 months after 300 mg, 8 months after my procedure nothing. I took last 75 mg July 6, 2010. My procedure was November 3, 2009.
I also had other improvements the first 33 days - like more energy.
My stent is still OK but Dr. Simka believes there must be something else as my blood flow is very low. We plan to meet in October and hopefully find out what else is wrong.
So, yes, your wife can hope to get rid off the pain.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby whyRwehere » Sat Jul 24, 2010 1:16 am

It is interesting that the pain is only in the right arm. I have been looking into CTOS or even just TOS, which to put briefly, is a compression of arteries, veins and nerves, by overdeveloped scalene muscles. For TOS, this causes issues in the arm. Some people suggest a chiropractor could help this problem, so since we can't afford surgery, we are trying out that route. If you do a search for CTOS on TiMS, you will find other related material to this subject.
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Postby bruce123 » Wed Jul 28, 2010 7:02 pm

SandyK wrote:Hi Bruce. I had that pain. It really was like my arm was burning from the inside. I was told it's called Neuropathy pain. No pain killer ever touched it. As a last resort we tried steroids and it worked! That was over two years ago and I haven't had it since.

I have not had Liberation yet. My time will come.

Good luck.


Hi Sandy,

Did your arm pain come and go on a daily basis? Our nurologist said that steroids are used on "chronic" pain, meaning continuous. He did not recommend it for intermitant pain, even if it comes along 5 times oer day.

Bruce
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