Feel like I am improving but doctor said I am in relapse and I am being treated

Ron,

I have been getting IVIG on and off since 1988 and have also been told it is extremelly safe. My personal opinion is that you have nothing to lose and everything to gain, trust in your Dr. and don’t be afraid to ask him questions before you go ahead with it.

Jerimy

Ron,

I am curious as to why your doctor thinks you may be relapsing, or why he thinks you could possibly have CIDP? Has he only come to that conclusion soley because of your limb weakness? Sometimes the residuals for GBS patients ‘flair’ up and limb weakness is one of the symptoms, along with terrible fatigue and sometimes several other things. CIDP on the other hand is a different kettle of fish.

I would have a emg/ncv before I had IVig, to confirm demyelination which would show if relapse or CIDP. But if EMG shows it, defintely have IVig.
Just me though….

Natalie pretty much said it …… I just didnt understand why the doctor would say either by just testing your strength and not doing anything else to try and find out what was really going on i.e. residuals, relapse or CIDP. However, many of us on the forums are very quick to criticize docs for not “thinking on their feet”, and not acting quickly enough when it comes to IVig or PP, so kudos to your doc for trying to stop further damage.

I have weakness from time to time and also feel I need more sleep than usual. But overall I feel much much better than I did a couple of months ago. Before my neuro saw me I was feeling fine, then I felt weak and tired when I saw him. Now…I am feeling better but have had a couple of “off” days.

I hope everything works out for you. Keep us informed!

I know when I first saw my local Neurologist he told me I had a probelm and come back in 3 months. 3 months later I want back and felt better and he said I was getting worse (he did a nerve conducting test on my hands) within 3 week I was seeing another Neurologist who did all the proper testing at a big hospital 1 1/2 hours away.

So it could be you are doing better because you are resting more but maybe your nerves are getting worse. So if he did the Nerve test and other balance test and what not and that is what makes he offer you the IVIG then I would take it.

Sue

Ron,

It could be CIDP but there are some other factors that Dr’s use to determine if it is for sure or not. I will see if I can find some information for you and post it, maybe Gene will see this and post in the meantime and add his information.

If you already relapsed, regardless of whether it’s CIDP or GBS you should be getting IVIG and/or the other treatments, such as steroids for CIDP, Plasmapheresis etc. The goal of the treatments is to put the disease in remission regardless of which it is. I have CIDP and I get IVIG every 30 days or less and will potentially forever. Since I have CIDP I also take Prednisone (not used for GBS).

As far as getting homecare, I have medicare and medicade, I got documentation from my Dr. specifying that I must recieve it at home. If you haven’t done that already ask your Neuro. to give that to you in writing. In the meantime go to the hospital infusion center if you can and get your infusions. I had no coverage when I first fell ill and I still got the treatments, get them whatever you have to do, the potential long-term damage just isn’t worth it.

Contact me by email and I can help you with any and all of this if you need it. [B]jerimyschilz at hotmail dot com[/B]

Take care,
Jerimy

PS-I don’t blame you for being angry, I would be to.

[quote=roncam1]This is my second relapse. Is this CIDP because of the more than one relapse or are there other things to look out for? I like to exercise and I have not really done any strenous exercise since having GBS and the relapse right out of the hospital. I am thinking what happened after leaving the hospital was I still needed IVig and I did not have enough but now I am in need of it again. Help me to understand, if you can. I am waiting on the treatment to come to the house. The delay is with insurance. I find myself frustrated with the state of medical care in America, because of the money side of it delaying the treament side of it. My fatigue is back and my legs buckle when I walk and I can longer pass a sobriety test. I have a two year old daughter and a wonderful wife, I feel like a lazy bum because I am not able to do much for them. I know this is not coherent but I am frustrated, angry, and just needed to vent.

Thanks
Ron[/quote]

ron,

as jerimy says, gbs or cidp, the Rx is the same – ivig. that is your immediate need. your 1st post says you were to get ivig the next day, what happened? neurontin for pain. if you go to the er, demand to see the oncall/resident neuro & demand an emg/ncv right now, no waiting. if that doesn’t convince them to Rx ivig, you need to go elsewhere w the emg/ncv results. take care. be well.

gene gbs 8-99
in numbers there is strength