New Member; What to Expect..
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April 29, 2007 at 12:59 am
Hello to Everyone!
I am a new member, having just discovered this board after a Feb. 07 diagnosis of GBS. After being told that I had GBS, I was hospitalized and recieved five treatments of IVIG and was discharged to home. I was told that I had a “moderate” case of GBS. My strength started to return before I even returned home from the hospital. After several weeks my muscle strength was at apprx. 50% of pre-GBS. Then, my symptoms started to return. I went to the dr. this week and was not surprised at the new diagnosis; he told me that I did not have GBS, but CIDP. I’ll go back to the hospital next week for more IVIG treatments, followed by steroids and another med that I don’t remember the name of. That’s about all the dr. told me. I’m feeling a little overwhelmed.
Besides the booklet that I recieved from this site, what other info is available? Are there any other websites, books, ect.?
And, here’s the big one…..what am I to expect? The dr. said that I would have this for “years”. How often do people with CIDP actually improve without treatment?
I live in southern WV; about a three and a half hour drive from WVU in Morgantown….how often do most people see their drs. and recieve IVIG?
I suppose this is more than enough questions for one post…..Thank You to Everyone who replies.
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April 29, 2007 at 1:41 am
Sheila,
Have you read the paper called “Whats in a Name : Important Differences Between GBS, CIDP and Related Disorders”? It is very interesting reading.
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April 29, 2007 at 12:56 pm
Sheila, Welcome to The Family. Why does your dr think you have cidp instead of gbs? You can have a flareup of your symptoms if you do not get enough rest after your initial bout. its called over doing. it takes time for the nerves to repair themselves after the bout, you are in the beginning, not enough time to repair alot of the damage that was done. rest, rest, and more rest is what helps the nerves recover. there are residuals to gbs that when not enough rest is gotten they rear their ugly heads again and possibly again. unless you have had problems like this before your feb bout it isn’t likely you have progressed that far to get the cidp dx. have you had a lp? ncv/emg tests? all the ivig does for 78% of people with gbs is it halts/slows the amount of damage being done to the nerve sheath-myelin. it is not a cure. that is why rest and pt/ot is important with gbs patients. there is alot of information on this site and in the threads, go to search and look thru the archives, there is tons of info from all over the world in there. or you can ask any questions you have and you’ll get all kinds of responses from world wide. and please feel free to vent whenever you need to, we know what you are going through and feeling. Take care.
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April 29, 2007 at 1:21 pm
To Ali…..is that paper in the archives on this site? If I can find it, I’ll read it. And to Cheryl…..I’m not a dr., so I’m not sure why the dr. said I have CIDP now. He checked all my reflexes; arms, legs, ect. He said I had only one reflex. He also looked at the nerve conduction study they did in Feb. This dr. specializes in nuerophysiology…he also teaches (I believe) at WVU’s school of medicine…he is supposed to be very good. I was hospitalized on Feb. 12, but I had been having the tingling and loss of feeling in my legs since late Dec. It just had gradually gotten worse… Then in Jan, one day I just couldn’t walk up the three steps to my back door. After that, my muscle strength began a slow, downhill decline. By Feb., my hands and arms were starting to be affected. Cheryl, I do hope you are right…hopefully the drs. will know more after this week’s hospitalization. Thank you so much…..and I WILL search the archives!
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April 29, 2007 at 1:26 pm
To Cheryl……Ok, now I am really embarressed. I just tried to access the archives on this site…….don’t have a clue how to do that. Where do I go? Thanks!
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April 29, 2007 at 1:50 pm
Welcome, Shelia.
Here (copy & paste – we don’t use live links on this forum to discourage hackers):
[url]http://www.gbs-cidp.org/newsletters/2006summerwhatsinaname.htm[/url]
You can use this link to search the newsletters by keywords:
[url]http://www.gbs-cidp.org/newsletters/fyimain.htm[/url]
hope this helps
cd
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April 29, 2007 at 2:41 pm
Hello Sheila,
Welcome to your new family where we feel what you feel. I’m not really good at searching through the archives the right way, so what I do when I have time to sit at the computer is to just choose GBS or CIDP, go back to the beginning, scroll through slowly and just keep clicking on things you might be able to relate to.
If you go to the main page of this foundation, not the forums (gbs-cidp.org), you can click on the STORE and look for some books. One of my favorites is “Numb Toes and Other Woes”, written in plain language, easy to understand.
If your doctor feels you need to get IVIG’s and stay on them for awhile, you can find out if they can be done at home so you won’t have to make a long drive.
More time passing will tell whether you have GBS or CIDP. -
April 29, 2007 at 2:54 pm
Hi, Sheila;
I pretty much went through the same path as you–diagnosed with GBS in Nov and then when it recurred I was diagnosed with CIDP (after many tests). I did IV-IG alone at first, when it was just GBS. When it turned into CIDP, the neurologist treated it only with plasmapheresis in an outpatient facility. I improved a tiny bit but kep relapsing. Then my veins collapsed and my neurologist essentially gave up. I found another one who treated me w/ steriods, plasma exchange and IV-IG while I was an inpatient, and I improved greatly. That was 1995. I continued on a low dose of pred symptom free until 99 when I relapsed again. At that point I got everything done as an outpatient, continued to work, and I improved and only had minor symptoms until recently.
when I was non-symptomatic, I saw my neuro once a year.
Good luck.
-Marie
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April 29, 2007 at 4:23 pm
Hi Sheila, welcome to the family. The GBSFi foundation sends out quarterly newsletter to its members. If you signed up you should have received the spring edition of “The Communicator.” It has an article worthwile reading “GBS, CIDP or what? And does it matter?” This is a reprint of a presentation given at the recent GBS Symposium in Phoenix. It has not been added to the GBS archives yet. If you did not receive the paper copy I’d be happy to e-mail you a scan of the 3 pages. Let me know. I scanned it a few days ago for two GBS friends in Germany.
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April 29, 2007 at 4:46 pm
Hi Sheila – Welcome! I was dx with CIDP in October, 2006 after MANY months of slowly progressing weakness in all extremities. My neuro recognized CIDP almost immediately, I had nerve conduction tests (ouch!), MRI’s, CT’s, and bloodwork at that time. I became so weak within a week that I couldn’t walk, lift anything, and could not use the bathroom without help. My neuro immediately put me in the hospital where I got a 5 day infusion of IVIG and she did a spinal tap. Within a week of discharge, I was “normal” with no symptoms (except that pesky broken ankle I got from falling down in September, 2006!). I first relapsed in December, 2006 and have been receiving IVIG every month since. I see my neuro every month and go through the usual neuro tests (walking on toes, pushing her hand away with my arms/hands/legs to test strength, etc.). My symptom-free days vary from 22-60, lately it’s been between 22-35. I have been trying to rest more – it’s true, overdoing it does hasten symptoms! I know that when I don’t get treatment, I deflate like a balloon physically, and mentally I get so cranky and emotional that I don’t want to be around me!:D This site is the best, and the people here are so caring that it is always soothes and comforts me to come here. I hope you feel the same way. Good luck and good health!
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