Why should I go to a neuro???

Hi M,

Well, the last time I saw a neuro was when my phisiatrist at the hospital said I should establish an outside neuro doc for long term. That was 6 and a half years ago. I had the interview, and sitting there as he read my file at the start, he then looked at me and said “OK, you’ve got GBS. What do you want me to do about it?” I stood, said meeting over, obviously you have no motovation to help, and walked out. I did stop for a second and looked him in the eye and said if you even think about charging me for this visit, I’ll tie you up in small claims court, making you have to appear, costing you a heck of a lot of money. Then left, and he didn’t charge me. I’ve said for a long time now, that a neuro’s job is pretty much done after treatment has been determined to have worked. From that point on, you aren’t treating the disease, you start treating the symptons or residuals. Any kind of doc can do that. I stuck with my phisiatrist for another year and a half, and she could prescribe any med I may need, and she, along with they, know a heck of a lot more about therapies then any neuro, hands down. That is what a GBSer really needs. Not a neuro throwing stuff at the problem guessing every step of the way. My GP has handled me and taken care of me for the last 3 years. I’m not saying don’t see a neuro, but on the pecking order of doctors, neuro’s can be quite thick headed. Don’t go on titles, go on who works for you the best and communicates the best. So, to answer your question M, a neuro probably can’t do anything that you already aren’t getting done by others.

m,

ditto racer. unless you think you are having a real gbs attack & need an ncv, i think you are wasting your time & $. take care. be well.

gene gbs 8-99
in numbers there is strength

Marge,

I agree with Racer that a phisiatrist is a great kind of doc to manage your recovery, for all of the reasons he stated.

However, I also believe you should have a good neuro too. And yes, many of them seem to have a limited knowledge of GBS, but the good ones are educatable, and interested in helping.

The reason I think you should have one, although you probably will seldom need to consult them, is because of the in depth knowledge of the nervous system that the specialty brings to the table.

In the unlikely event that you have a relapse (yes, it does happen) or you end up with CIPD, you will already have someone on your team familiar with your history, and capable of getting your tests/treatment started quickly. Also, you won’t have to start educating them when you are at your most vulnerable, or have to convince them that you know whats happening to your own body – they will have already been through the learning curve. Too bad thats necessary, but let’s be realistic.

Also, they can be of help with residuals. Although other docs can prescribe things to help your symptoms. neuros usually know which drugs to start with, and which ones usually work best. When you have the right neuro on your health care team, you have a good partner for recovery.

All that said, I also must applaud Racer’s response to the rude and unprofessional neuro he encountered. Perfect response to a perfect jerk!

Great post everyone. Now I know why my neuro office is kind of kickin’ me to the curb! 😉 You are right, they dont seem interested unless having a GBS relapse. I am going to find a physiologist in my area for continued treatment.

Cara

Marg,

I’ve been asking myself the same question. Been looking for a decent one for aaaaaages – probably just wanted someone to understand. Now that I’ve found this Rheumatologist who sort of understands and believes, I almost dont feel like carrying on my ‘quest’.

Since my GBS onset in April of 1998, although otherwise making a complete recovery, I have had considerable problems with my left foot. I went to 2 podiatrists , who gave me orthotics and sent me on my way. The orthotics were only a temporary fix. The problem is that I am walking on the side of my foot. Now I have developed arthritis in the foot, which compounds the problem. I finally went to an orthopaedic surgeon and will be having surgery next month to realign my foot and remove the arthritis. Although the thought of surgery is a scary one, for the first time since my GBS onset, I have hope that I will be able to regain at least some normalcy to my life.

The point to this is that if you are not getting relief with your current providers, keep trying until you find someone who can help. If that means going to a neuro, it is certainly worth pursuing.

Good luck.

Tim Ross
Lansing, Michigan

Question for Tim ~ I have never heard of removing arthritis by surgery. Could you please explain? Thanks

Hello Marge,
Even though I have CIDP, I think I can still relate. I am healing and recovering and I’ve gone back and forth about whether I still need a neurologist. It makes sense to me that I should only go to one if I show signs of a relapse. I am changing family doctors for the third time and the new one shows promise of wanting to learn about CIDP. That’s enough for me.

Rather then a neurologist, what I want is a doctor that has a knowledge of rehabilation and physical therapy because I need to learn how far to push myself in a recovery.

tim,

after surgery, if you find your foot ever starting to roll over, you must force it by any means necessary to keep it where it belongs. w time it will stay there. take care. be well.

gene gbs 8-99
in numbers there is strength

judi, they scrape out the arthritis with a really sharp instrument and clean up the joint. it makes the joint smooth rather then rough like it is with arthritis. i’ve had it done several times to my knees.

Hi. Well, I’m 14 years on from GBS and I saw a neuro in May – now await nerve conductions studies next month. I don’t think it does any harm to get a neuro on your side.

Hi Cheryl,

Aren’t those bone spurs being removed? Trying to get educated here.