Disappointing appt with neurologist today | Arthritis Information

I have to try and keep this short, my hands are killing me. Basically the results from my EMG I had over a month ago with the needle conduction test, showed that I do have a mild, progressive sensory neuropathy. However, the test results do not support my symptoms and physical findings of extreme pain and swelling. Many more symptoms but that is what she was checking for.....

We went around and around, she says I have to give it more time, I tell her I can not live like this any longer. She says the gabapentin can take months just to get the dose right and I have only been on it a couple of months. Its not helping at all!! She says my problems are ai related, go back to rheumy. Rheumy has sent me to all these other doctors because she can't help me!!!! Neurologist says some sort of soft, connective tissue disease-go back to rheumy. Agrees that my current rheumy is the best in town (also the second one I have seen.)

Says she can not help at all with the pain, I have to give it more time. Not acceptable to me and she gets upset with me for not listening to her. I repeat back to her, she doesn't know whats wrong, my symptoms do not support her findings and she can only treat the symptoms and it may take months, if ever. She says yes. I again, say not acceptable. Around and around we go.

We agreed that it may be time to go to the Cleveland Clinic. Its the biggest, diagnosing type of hospital near me. So, I see the rheumy April 12, if she doesn't have anything further to add, I am asking to be referred to the Cleveland clinic.

She agrees acupuncture may help but didn't agree with anything else the pain specialist had said. I will continue to go to the pain specialist until I get in at the Cleveland Clinic. Whats it going to hurt?

Speaking of pain clinic, time to go for my physical therapy consult with the specialist. Lets hope this appt goes better!

I am sorry Michele. I hope you can get into the Cleveland Clinic and they can find out what is wrong with you FINALLY.

Huggs

Good luck w/ the Cleveland Clinc! They are awesome My aunt is a teaching nurse or something to that effect there. Good luck :)

Oh Michele I so feel for you! You are in my thoughts hun!

Have they tried you on Lyrica for the neuropathy? I do not have it but I did some damage to a nerve in the back of my knee which caused the toes on my left move not to move for months. The Lyrica has helped not only with the pain, but I am starting to get some movement back in my toes. It took about 2 weeks at a dose of 50mg 3x a day for this to happen.

I am glad that you are pushing and fighting to find out what is going on and to get out of all this pain you are in. I know it sucks and it is hard but way to go!!

The Cleveland Clinic is awesome! If you do not find answers there then maybe go to Mayo Clinic?

Sorry MicheleB. All we can do is continue to try to get the right dx and then the right treatment plan.

I wish the Mayo clinic in Minnesota was close to you - they use a group approach to figure out what is wrong - that saves time. Get yourself to the Cleveland clinic, if that is the closest 'good' place.

I don't see any thing wrong with going to the pain clinic. Keeping the 'faith' will be easier if the pain clinic can get you some pain relief. Maybe it will really help big time. Go ahead and try acupuncture - I don't think it will make you worse.

Hugs.

Dear Michele, I'm so sorry I know what you are going through. Keep calling everyday and insist on help. I've experienced that pain and I feel for you!

I took Gabapentin between the Ultram/oxycodone and getting on Prednisone. A pain specialist and my GP both suggested it , first 3 then up to 6 pills several times per day! I fell in the shower and bumped my head after taking 6! I couldn't take the RA meds right away (because of healing from an operation), so the Prednisone saved my life. The pain ended, the RA meds are in the works (still not perfect), but Gabapentin did help some, but not to attack the RA! (I had a neck pain, too). GABA seems to be a favorite of pain specialists. be careful of how much you take. Pain makes you crazy and you can't think straight, your body responds with the RA getting worse, and achying all over your joints! The same or a different one every day....good luck!Keep calling, yelling at who ever will listen....

sarah

Michele, my neurologist was no help with the pain and had no patience for trying different solutions. It is my pain specialist that is trying to come up with a solution for my pain. She has tried one medication after another. She said that these nerve medicines just don't work right for each person. You have to kind of hit on the right one. Letting you go for months in that kind of pain is just cruel.

I think going to the Cleveland Institute is a great idea. At a minimum, I would second opinion the Neuorologist. I am asking for a new one when I see my new Primary because he said he could do nothing for me. I do not believe I am a lost cause.

Go with the doctors that believe you can be helped. I would be mad too. Keep hanging in there.

I take Lyrica for some nerve damage that I have. It's really helped me. In fact a couple weeks ago I neglected to get my prescription refilled for a few days and I was really surprised how bad I was without it.

Hope they get to the bottom of your problems soon. Hang in there.

Thanks everyone. I started off on the Lycra. I took it for about 6 weeks, started on a lower dose and went up. It was so expensive though and they said the gab was pretty much the same thing and MUCH cheaper. So, I have been on the nerve drugs since the first of the year. They make me dizzy, nauseous and completely out of it. I did start taking the gab again yesterday and I feel even worse today.

I am just out of the will to fight. I have been sick for three years without a solid dx. I have lost 5 babies. I have lost friends. My marriage is suffering. I have NO sex drive at all.

I was and am still trying to be hopeful for this new pain clinic. It hasn't gotten off to a very good start though. The first day I waited over 3 hours for my appt. They can't start any meds or iv infusions until the blood work comes back and just getting the blood took 3 days, 4 people, 12 pokes, passing out for 15 minutes, oxygen, my body is just so frail.

I was than hopeful for the new physical therapy (pt). I asked them how their pt was different from every other pt places I have gone to. They said the therapist was from Canada and they believe in treating the whole body and not just body parts. That the therapist spent the whole time, hands on with you instead of passing you off to an assistant. Ok, sounds good.

Went to my appt last night. After waiting 30 minutes, talking to others in the waiting room. I find out that THREE people had the same appt time I had with the same therapist!!!!!!!!! He turned out to be very kind, foreign, a bit hard to understand, but was very honest. He said that it seems, for whatever reason, that I have MANY, many different muscle con-strictures thought out my body. That is PROBABLY (he is guessing) what is causing the pain and swelling.

He wrapped me in some heat and left me laying on the hard table for 30 minutes, not comfortable at all. Than he spent about 5 minutes pressing on the con-strictures in my right arm. I have to say it hurt like hell! He said that because the muscles have constricted so much they have torn and caused fibrous tissues to form and they have to break up the fibrous tissues and that it is going to hurt.

My arm feels bruised today but I have to say I do have a tiny but more range of motion in my wrist and hand. He only is in that office wed and fri and I can not take time off on fri so I made an appt for next wed. I just hope that he actually has time to spend with me or I see no point in continuing to take time off work for it.

I do see the acupuncture person today in one hour. I was told that I should be able to tell if the acupuncture is working with in six visits. Ok. I will give it 6 visits with an open mind. I should be able to get those in before my 4-12 appt with the rheumy. If I have not gotten any improvement or a more solid dx, than I am going to fight to go to the Cleveland clinic.

I am so depressed. I see a zillion doctors, they all agree something is wrong but no one can even tell me WHAT is wrong, let along fix it. My mother has similar problems and is pretty much bed ridden, she is 55. Her problems started about the same age I am now. I look at her and I just can not imagine my life being like that in 20 years. If that's the case, I don't want life. The pain is too much, the depression is too much. The lack of proper dx after so many years and so many doctors makes me think I am insane. They have the technology to clone a person for crying out loud but they can not tell me why I am so sick??!!!

I am not asking to run a marathon. I am willing to do whatever treatments they think will help, to take whatever toxic drugs they throw at me, to do whatever alternative treatments. WHATEVER, I will do it. But I have to start seeing some improvement. I just can not go on like this much longer.

Michel~

I only take Lyrica once a day. At night before bedtime. Originally my doctor prescribed it for twice a day but the first time I took it I was so "groogy" the next morning I was worried about taking it during the day. I have to have a clear head while I'm working so I do not take any pain medication stronger than advil while I work (Granted I'll take 4 at a time as needed sometimes; but I keep my head) If your nerve medication is causing you problems you might be able to do on less than prescribed; but definately clear that with your doctor. My doctor said it was fine. Something was better than nothing.

Hope all goes well this afternoon. I'm real sorry you are having such a difficult time. We're here for you.....Don't forget that.

Thanks Lovie. The gab is definitely making me feel wrong. Lovie....does the Lyrica give you horrible dry mouth? If you had it...does it ever go away??? It is driving me crazy!!That's a good attitude. Keep it up!!

Micheleb, thanks for the report (how strange), we'll be looking to hear from you,

sarah