Heated up in Southwest Florida!
AnonymousNovember 20, 2009 at 2:23 pm
I’m sorry that my first post to this site has to be a venting session but I’ve just been to my second bad neurologist!!:mad: Here’s a brief history:
diagnosed with a mild case of GBS after a respiratory infection. Tingling started in toes on one foot and by morning was in both feet & hands. Within the week calf pain began and it was hard to stand up. Went to Neuro, he did reflexes and nerve conduction test and diagnosed GBS.
I spent the next couple weeks in bed and then it started to slowly get better. After a year I was almost back to normal except for minor residuals and a feeling of not being as healthy as before, (still had nausea & fatigue.)
Right knee goes out for no reason….pain so bad I couldn’t stand on it. Within the same week I came down with a yeast infection and all the sensations I had with GBS start to come back but with more pain and all over the body this time. The knee and yeast infection clear up within the next couple weeks but all the GBS stuff continues to get worse and with more pain and additional sensations that I didn’t have the first time, including a feeling of the muscles dissolving and then loss of use!:eek: However, I am still mostly functional.
So here it is November and it’s still going on. I had been reading the GBS forum but started to also read this one….afraid it might be CIDP instead. I found myself relating to a lot of the ways people were describing their symptoms on this forum so I set up an appt. w/ a new neuro, (mine was no longer practicing for suspicious reasons….I’m not real surprised!)
I did my homework and searched out what sounded like a great Neuro (he was affiliated w/ the Cleveland clinic!….and accepted self pay patients!) At my appt. he took two phone calls one was 10 min. and the other was almost a half hour while he left my husband and I waiting in the exam room. Basically, after he found out I didn’t have insurance (which he should have already know since I was told he takes self pay patients) he was no longer interested AT ALL!! He did a basic test of my reflexes and said they seemed to be ok so he didn’t think it was GBS or CIDP and that it was probably all stress related and in my head!! He gave me some Lyrica to try for the pain and my bill was almost a hundred more than I was told on the phone and that’s that!
So what do you do with a diagnoses of “it’s all in your head” and is there such thing as a good neurologist in Southwest Florida who will take the time to listen and believe you when you KNOW what’s going on in your body??
Whew!….deep breath….ok, that’s better! Thanks for listening!!:)
AnonymousNovember 20, 2009 at 3:48 pm
Lyrica is also similar to neurontin which has a generic called gabapentin. The dosage numbers are a little different, but if cost is a concern, you may want to try the generic instead of the name brand. It might save you a couple of hundred bucks. I am not a Dr. and don’t accept this as medical advice. Check it out before you decide, but it may be worth the effort. –Disclaimer—
But, besides that… I am sorry that you were treated like that by ANY Dr. Whether you have insurance or not, you deserve better. Your cash is as good as any insurance check. His service should be good also.
At the beginning of my “quest for diagnosis”, a neuro also told me it was in my head, too much stress, etc. 20 years later, I am on disability with CIDP. I am so glad it is only in my head (sarcasm…..)
GBS and CIDP are similar in some regards. In both cases the immune system attacks the covering the surrounds the nerves. the nerve doesn’t work as well, and you have symptoms. In GBS, the attack is usually fast and furious. Then the body responds to the attack and recovery begins. It sounds like you went through that.
With CIDP, the first word “Chronic” tells it all. It comes back over and over. That attacks may not be as “fast and furious”, but they become chronic. I believe they say that if the attack cycle is longer than two months, it is CIDP. Something like that.
If your symptoms are severe, they seem to try to diagnose it faster. If your symptoms are sub-acute, they seem to blame it on other things and go on. No good for you !!. The fact that you already went through GBS should alert them to the possibility of CIDP.
My advice, keep on pushing. I know it is expensive, but if you want an answer, you need to push for yourself. There are treatments that can make things easier on you, but without diagnosis, they are unavailable. How frustrating !! Keep on reading and learning. An informed patient makes a Doctor better.
Let me know if I can help
AnonymousNovember 20, 2009 at 6:33 pm
Can you find an MDA (Muscular Dystrophy Association) clinic near your home? In some states they deal with patients with CIDP or other similar diseases. And…it’s FREE! They do the testing for free, the dr visits are free, etc. The treatment would cost you money but I’m sure they have services available to assist you with that too.
I think it’s worth a shot.
AnonymousNovember 20, 2009 at 6:55 pm
MS is demeyelination in the brain centers while we have the DM at the peripherals…
As for THAT doc? The problem is in HIS head, not yours! I had a neuro similar to that one, I simply refer to him as ‘the Quack’. No more needs to be said.
Also check out IG-Living’s on-line magazine, take a look at their ‘medical advisory board’ as well as the docs mentioned on this site’s med advisory board. There are other docs, more active and interested in our medical problems out there! It just takes a bit of ‘digging’ to find them.
Good luck and I hope you find a ‘keeper’ and soon!
AnonymousNovember 22, 2009 at 8:11 pm
There seem to be a few of us on this sight who were originally diagnosed with a lite case of GBS and didnt get off as easy as we had originally thought. I am 7 years after my original bout still in limbo. one thing the doctors cant say is how your disease feels from your prospective and your prospective is that it feels the same as the first one and if the first one was GBS and so goes the rest there after. And like KEns doc said two GBSs probably = cidp. I hope you are in for a shorter ride than I and I dont wish you CIDP but if you have it I wish you a quik diagnosis so you can move onto dealing with this. dick is 100% correct this subacute thing is a disadvantage for diagnostics for some reason.
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