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Old 02-17-2012, 10:18 AM #1
Nsanity99 Nsanity99 is offline
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Unhappy Neurologist doesn't believe me

Hello,
I was diagoised with RRMS in April 2011. In October 2011 I started to have this sharp, electrical, burning sensation shooting down my right arm. The pain was 10/10 but only lasted for 5-10 seconds. It started out as an occassional discomfort. I mentioned it to my neurologist. He dismissed and told me he wanted to stablized my DMD treatments first.

Well in recent months the pain was still brief, but was coming every 10 minutes or so. I was having trouble sleeping at night and focusing at work. I finally pressed my neurologist about it and he went into his explaination of why he does not believe that MS cause pain, but he agreed to start me on 100mg of neurontin 3 times a day. This did nothing to help the pain so I called back and he increased does to 200mg 3 times a day. This seemed to help for a few weeks, but now the pain is back just as bad as before. I feel like if I call again the doctor will just think it's in my head or that I am trying to get drugs. I feel awful and don't know what to do. I would appreciate some advice.
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Old 02-17-2012, 10:35 AM #2
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Hi and welcome to NT.

First, I think you need to find another Neurologist. MS does cause pain and any doctor that tells you or believes otherwise needs to go back to medical school.

Neurontin does help with this type of pain but the dosage varies between people. What helps me might not help you.

If you can do it maybe search for an MS specialist or a Neuro that limits his practice to MS patients only.
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Old 02-17-2012, 10:42 AM #3
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Hello and welcome to Neuro Talk. You found a very compassionate group of people here. There will be lots of support for you while you go through all these medical issues with your MS. I am sorry your doctor treated you like that. This isn't in your head, and he wasn't very good to just brush you aside. You need to find another neruo specialist that has an understanding of your condition. My cousin has this, and I know from her what her experiences are. Please keep seeking help. Come back here with any questions you might have and all of us here will try to help you. I am on the welcoming commitee, and wanted to say hello. You may even make some friends here too. ginnie
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Old 02-17-2012, 11:29 AM #4
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hello and welcome!

Your neuro is being incredibly dismissive of not only you, but of the years, and decades of research that goes to prove MS DOES HURT! whether its thru spastic muscles or nerve pain, IT HURTS! Your MD should NEVER dismiss your pain, even if he really thinks you are struggling and having emotional issues. he should refer you to a pain management clinic for a more thorough diagnosis and stop relying on his own opinion.

If I were you, I wouldnt walk, but I would RUN to a new neuro who listens, believes in me and is willing to go the extra mile to help me when I say im in pain.

I wish you the best of luck.
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Old 02-17-2012, 12:40 PM #5
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I agree with everyone here. Your Neuro is a loser! He is fired. He needs pat on the head (with a hammer)
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Old 02-17-2012, 12:51 PM #6
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I'm so sorry you are having such pain. Nerve pain can be horrible. I take Neurontin (generic form) for mine and it helps. I do get breakthrough pain from time to time but all in all I have done well with it.

And, as others have said, find another neurologist for a second opinion at least. There is no need or reason for you to have to be in such pain.
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Old 02-17-2012, 02:29 PM #7
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Okay, let me add some more here. I have a terrible shooting pain down one thigh muscle all the time. Its almost like a tearing sensation or like something is ripping a knife down my leg. Its fast but painful. The docs can also try you on Lyrica for this type of nerve pain too.

Another thing to try is Capsasin Cream. This stuff will stay on your hands for a long time and burn your eyes or other sensitive sites that you might touch. So its important to wash your hands then wash them some more.

Sometimes you can use this type of cream and it seems to "fool" the brain into thinking about the new sensation and get it away from the other pain you are feeling. M.S. is faulty signals and there is really nothing wrong with your arm....your brain just thinks there is. Its worth a try and you have to keep doing it to break the cycle. Hopefully you don't have a pinched nerve or something like that going on....but I usually find a pinched nerve feeling is always there even if it just feels weird then it shoots a bad pain....but you always know its there. These M.S. things tend to come and go at will.
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Old 02-17-2012, 04:50 PM #8
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First of all welcome to NT...lots of info, support and laughs here.

My first neuro told me I was suffering from migraines and gave me meds for that...I had NEVER had a migraine-until I took that med.

He dropped my insurance, thank goodness. The second neuro in consult told me my sxs were from fibromyagia. Not...

The third one said, let's watch you and see. A year later I had severe locking spasms. He put me on a DMD and monthly IV steroids, then sent me off to his nurse practitioner, who dismissed most of my complaints.

A dear one on this forum recommended my current neuro...he is conservative, and he and I occasionally butt heads over treatment, but he listens, validates my symptoms and concerns, and never, NEVER dismisses my pain levels or symptoms.

Don't feel bad if you decide to try to find another neuro. Keep a symptom journal for your records...get all of your films and reports and always keep copies.

Do your research...try to find info on neuros in your area from patients. Have a consult and ask the doc you're shopping for his theories on pain, etc. You are a health care consumer, and have the right to validation and the best treatment possible.

Keep us up to date on what's going on...
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Old 02-18-2012, 09:45 PM #9
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Whoever says we don't get pain with MS needs their heads read!
I'm sitting here thinking there's someone sticking pins into me randomly, and worse still, I'm getting intimate pains that are just plain weird!
Sack your Neuro. Find a better one.
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Old 02-18-2012, 11:53 PM #10
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I agree with all the others about MS pain but I had a completely different reason for the pain I had down my arm. I had a herniated cervical disc. I was pain free as soon as I had surgery.
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