Got results on spinal tap today. not good

I have CIDP and my spinal tap and nerve biopsy were both normal. I am still in pain from my nerve biopsy 2 and 1/2 years later.

Sue

always try ivig first. i have never heard of folks having trouble getting off ivig. can others comment here? thx. ditto sue. i recommend no nerve biopsy. lifelong pain is somewhat common. take care. be well.

gene gbs 8-99
in numbers there is strength

I was dx with cidp in Oct of 2007. MD started me on Prednisone, CellCept, and IVIG. He does not routinely do nerve bx.
From my elbows to finger tips are numb, tingling, painful, and clumsy. From above my knees to my toes are the same way. Like when they go to sleep and first start to wake up. I now use a walker to get around. My gait is lilke a sick duck.
I do have elevated protein in spinal fluid and blood work is abnormal. also have mgus with igm spike.
I hope they will quickly start tx on your husband and he has a positive response.:)

Hi everyone. I’ve been diagnosed with GBS back in April of 07. It’s been hell. Like many of you, I spent 8 days in the hospital, 5 of them getting IVIG. Left the hospital in a fairly crippled state. Couldn’t walk, or feed myself, hands very numb, fingers tingled like hell. I was home for 2 months before going back to work parttime.

I’ve gone back 4 times to the hospital for aditional IVIG. The last treatment didn’t seem to do anything so I decided not to get anymore. My insurance covered it all but it is very expensive, $13,000 per treatment, well that’s what the hospital bills. I never had any bad reactions or rashes to the IVIG. I do find that Prednisone is the only thing that keeps me going, my doc was reluctant to prescribe it but he finally gave in. I only take is as needed, 10mg per day.

I did get steroids via IV last fall and it was great. Could move, walk, do stairs. Felt like Superman. Taking Lyrica for the neuropothy which was quite intense. Also had 2 Spinal Punctures, both showed nothing abnormal.

What is a nerve biopsy and why does one need it? In the last few days I’m finally feeling a bit better, I presume its the change in weather. The intense cold has been killing me, live in Chicago. Hoping that with some warmer days I can get outside and exercise a bit. Taking a yoga class right now and it was tough starting but all the mild stretching is helping, it’s only once a week. We need to keep up our muscle strength too. Get a small dumbell set and use them while watching TV.

One thing that was very frustrating initially was the inability to use my hands. Holding a glass terrified me, and I wore gloves as fall approached, couldn’t handle the cold. Trying to get on a computer and type was amost impossible. That’s better now but I seem to be having memory problems which is driving me nuts. Can’t remember names, etc. My doc say that I need to exercise my brain more. Anyone else have memory issues?

Just hang in there, things do seem to get better, but I’m a long way from how I used to be. retirement is so far away yet.

Dexter

Hey Dexter, Your last name is not very Italian sounding, Is Elmwood Park still little Italy? Well, I live near you, I sent you a private message, check the top right hand corner under your name.
You mentioned a nerve biopsy, they probably want to do this to verify if there are continual demylienations. What they do is remove a small area of nerve, and it will look like layers of an onion so to speak (onion bulbing) each layer representing a new attack, a healing process, a new attack …… kind of like the rings of a tree, each ring representing a year of growth, in this case, a new attack. Many on this site have had this procedure done and wish they had not. Apparently it is difficult to heal from, and some never loose the pain at the site. I really don’t think there is a high % of docs who still use it as a dx tool. Have you had a spinal (l/p) yet to confirm elevated protein? A ncv/emg to check conductivity or blocks? I suspect the docs are thinking cidp now, hense the nerve biopsy, however, you have responded to steroids, typically, gbs patients do not respond to ster. only cidp. Secondly, you had subsequent ivig with good results, this indicates that you relapse,then remitt with treatment. The relapse/remitt is not typical w/gbs, but cidp. Regarding the price of ivig, you pay insurance, they took you on, it is all about the gamble, and they lost. So take advantage of the insurance as ivig is your chance for a normal as possible life. My 11 y/o currently gets 100g monthly, over four days. The total pay out with nursing is about $15K monthly. If you have a low lifetime benefit, you can consider home health care (maybe you already do that)Additionally, if you call Gammaguard direct, you can have the ivig sent to your house and they set up nursing care to come to your house. You pay (insurance) the nurse seperate and there is no middle man w/ the drug. For instance, I asked gammagard for their price per gram. They would get $68 a gram from my insurance, I currently use a nursing agency that specializes in ivig therapy (middleman) so their profit that my insurance pays them is $128/g. The only reason I do not change and do it independantly, is that my son likes his nurses and mentally it is important to keep him happy. When he gets older and more used to this crap, we will change. ALWAYS STAY INSURED, get cobra if you have to in between, once you are without insurance, you can be denied insurance because of a pre existing condition. Gammaguard also has a program called gamma assist, and they will give you a certain amount of ivig free based on how many treatments you get while you are insured (kind of like a rewards points on a credit card), should you ever loose insurance.
Dawn Kevies mom

I reread your post, I am not sure, as we do not take steroids, but I think you have to take them regularly, I don’t think you can take them as a need be basis. I also re-read that your l/p was normal. Elevated protein does not always show up. How about the ncv/emg? Did they test for ms (mri) Lupus? The reason your doc is hesitant about steroids as a permanent treatment, are they are hard to get off of, and have serious side affects when used long term.
The fact that you stopped respondig to ivig is curious, did you still get the loading doses? How far apart were the treatments, maybe they need to be closer together. Low doses of steroids in conjunction with ivig are helpful to some, in fact it is the next course of treatment if ivig alone does not work. What Doc do you see? There is a doc at Univ of Chicago that is on the gbs board. His name is doc. AArmansan or something like that, call the foundation, they can give you his name.
Dawn

Thanks Dawn for the quick and informative replies and call. It meant a lot. Feeling a bit lost through all this.
Dex

dexter,

i advise aginst a nerve biopsy. take care. be well.

gene gbs 8-99
in numbers there is strength

When I was dx with CIDP last sept. they did a nerve biopsy and a muscle biopsy after they did the LP and various nerve conduction tests. Maybe I got lucky but the only long term effect I’ve noticed from where they took the nerve out is a numb spot along the side of that foot. They’ve been treating me with massive pulsed steroid doses…am hoping that next time I see him he will let me try to ween down some cuz the side effects are starting to get pretty nasty 😮 altho I suppose that the alternative is probably pretty grim.

[FONT=”Franklin Gothic Medium”] Hello everybody, im new to this. I was diagnosed with GBS when i was 17 years old. im now 22 and though i have gotten much better over the years, im still recovering and not yet able to walk on my own. My doctor put me on IVIG treatments for a year. I would go for 1 week per month.
I started out with tingling and calf cramping then ended up bed ridden, not even able to dress, feed or bathe myself. the numbness in my finger tips and from the ankles down has not stopped.
The only things i was perscribed was a pain killer, sleep aid, anti depressant and an appetite inducer because i had lost 40lbs. i was reading through these blogs and i see that many of you are recieving the same medications. what are they for?? has anyone tried Gilenya? im going to request it on friday at my next dr. appt. its new to the market so ill feel like a lab rat but whatever works… its been 5 years!!!
I still feel that i may never fully recover. its terrifying but its out of my hands. Im doing everything i can to try and be normal though such as getting married, driving, doing online college courses and we’ve planned to have a baby within the next 2 years… etc. my goal is to keep working my ass off and hopefully my body will wake up. keep your fingers crossed. [/FONT]

I was in hospital two weeks ago for my IVIG. They did some tests (blood, velocity etc.) and found that Immunoglobine does not work good enough any more. I am now on Prednisolone (30 mg in morning) and they hope CIDP (as well as psoriatic arthritis and Crohn’s) will go in remission. I already feel extremely well and hope I will still go better. I have now only a numb feeling in fingers and toes anymore while coordination of legs and arms (unless I tire myself to much) has greatly improved. No pain in bones, belly (no diarria -never know how to write this properly) and no rashes anywhere! Perhaps cortizone is not too bad as a speed-cure to get the system to calm down.

Of course no salt/sugar allowed to avoid blood pressure and bloated face and weight gain (anyway, am finding nice things still to eat).