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please help, EMG really hurt me


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Old 04-28-2016, 08:57 AM   #1
Marythefirst
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please help, EMG really hurt me

Hello, please can you give some advice - my symptoms are those of small fiber neuropathy, severe insensitivity and pain in the limbs but only in relation to exercise, they go away with rest.
For some reason this new neurologist asked me to do an EMG (even the doctor who did it said that it was unrelated to small fiber neuropathy), and during the test it was by far the most painful thing I ever experienced and now after 22 days my arms and legs are basically paralyzed in atrocious pain, like my usual pain only 50 times worse, and for ten days I also had these random shots of pain of 30 seconds-one minute randomly in the big nerves (like sciatica, big nerves in the calfs, one arm feels like carpal tunnel etc). I am in huge pain and also very scared because I don't see it going away - can you please suggest why this is happening? I haven't had any tests done for my peripheral neuropathy, and the neurologist who ordered EMG basically disappeared (he wants $200 only to listen to what he has done to me, appointment in two months).
I don;t want painkillers who might damage the nerves further, I want to understand what the hell is happening. What kind of tests should I do? Can it be just the lack of some neurotransmitter or electrolyte that is causing this?
Please help

 
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Old 05-16-2016, 11:41 AM   #2
Mommala
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Re: please help, EMG really hurt me

Hi Mary, I'm so sorry for all your pain and hope that by now you have some relief. You do not indicate how old your are and this may make a difference.
It sounds like you have a lot going on. I was diagnosed with small fiber neuropathy about two years ago and I am now 65. It took a long time to get to that DX because I had every test imaginable first. All nerve diseases seem to need an exclusion process to determine what you may have. EMG's won't dx SFN. EMG's only detect large fiber nerve problems. Only a skin punch test will dx SFN so you will need to find another neurologist who can and is willing to do the test. I understand that not every dr will do it, thinking it unnecessary (check your insurance coverage) or have the capability to do it. It's rather simple and not really painful. Test results are sent out to a special company that studies it. When you have SFN, you have less nerve cells in your skin that you should have which is why certain symptoms appear. It usually starts in the feet and could work it's way up the leg. Your hands can be affected. But I'm going ahead of myself.

After I was DX'ed with SFN I began to have other symptoms that did not seem to match those of SFN. I made a record of how I felt each day. It was much like yours: pain all over but goes away with rest (initially). More and different pain developed. I waited to see my specialist but in that time, I did some research and noticed my NEW symptoms matched fibromyalgia. I was a little disheartened to hear this, but I wasn't about to DX myself. When I went back to my specialist, I gave her my record and we discussed my 'new' pains. She recognized it right away and told me fibro is probably what I have as they go hand-in- hand. Ugh!

To make a long story short, I found a very good rheumatologist, upon finding one over the recommendation of my neurologist, who agreed with the fibro dx. Please do some research on this and you will find that the way they dx fibro now can be somewhat different than in the past, mostly with the pressure points dx. Please consider pain management. I have never read that pain meds ruin your nerves, but I'm afraid pain meds are the only relief. Exercise helps. My dr. does not believe that certain foods affects EVERYONE, but MAY affect some people. I was particularly interested in his answer to this question. It didnt seem that food affected me one way or the other. For me, I think the weather may affect me. I life in the Northeast and wet, cold rainy weather seems to be the culprit.

I hope you are feeling better and my recommendation is find a GOOD rheumatologist and see him. Studies have been done that indicate that fibro may be related to our brain system and thus our nerves. Research that as there is a very renowed dr. who studies fibro and the brain. His name excapes me but you'll find him.

Feel better!

Last edited by mod85; 09-20-2016 at 02:50 PM.

 
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Old 09-20-2016, 09:14 AM   #3
hancock7
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Re: please help, EMG really hurt me

I also have peripheral neuropathy and have suffered for the last 2 years after a motor vehicle accident. The EMG test is very painful and I don't think there is any cure for this. My Doc ordered a cream for me and never told me from a Bio-Med company the cost was $2700.00. I was angry because it helped a little then after awhile nothing.I told her she should of told me and her reply was you have insurance. the doc.also ordered Tens it did nothing. She said it was not because of the accident that I got this and I told her how the hell could I b fine one day and then have chronic pain right after the accident it just doesn't make any scence. Then she told me I needed to see a syk, what the hell anyway I'm still angry about that day and don't plan on going back to her again. Sorry but this is just how I felt. she also told me I will not get better only worse because it will travel to other parts of the body and it already has. Such luck but glad to b alive, the other party was not so lucky but she died of a over dose of heroin and was on drugs that day and speeding we hit head on any it's all along story, still get upset how this changed my life from being active to a couch potatoe and ur butt gets sore from sitting.lol

Last edited by mod85; 09-20-2016 at 02:51 PM.

 
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