AnonymousNovember 5, 2006 at 3:52 am
I got GBS in March 04, was lucky and didn’t need a vent. I was totally paralized from the neck down. Spent another month in rehab then went home and started PT. My neuro changed my dx to CIDP in August 2004. In May 2006 I moved to Texas, got a new neuro who now says I have residuals from the GBS, not CIDP. I stopped going to PT in December 04 because I felt stiff and tight all over, so I’ve had this problem of stiffness and tightness for some time now. My first neuro tried IVIG in Dec 04 -(5) Feb 05 – (2) Mar, Apr & May 06 (3ea) and PP in Mar 05 (5). I started neurontin in Aug 04 and currently take 3200 mg a day for about 18 months now. My new neuro says the stiffness is not related to the GBS. He’s refered me to a Pulmonary clinic, a Rheumatologist and an Internal Medicine doctor. All 4 agree on one thing, there is somthing wrong, but they don’t know what it is. I always thought that the stiffness and tightness was part of the CIDP since my first neuro never said it wasn’t. So now to my question, is stiffness and or tightness of the arms, legs, chest and abdomen part of either GBS or CIDP?
AnonymousNovember 5, 2006 at 8:56 am
i don’t understand. your new neuro says you have gbs residuals & later in your post you say he says stiffness is not gbs related. natch it can be anything. i’ll put my $ on gbs residuals first, cidp 2nd. what do the emg/ncv say? take care. be well.
TX Mike Yuan, MD. Neurology & Pain Management Bellaire Clinic, 9110 Bellaire
Boulevard, Suite H, Houston, TX 77036, Phone: 713-490-1493
4703 Brookview Drive, Sugar Land, TX 77479-3073
Dallas: one of the world’s most renounded GBS Immunologists, Richard Wasserman, M.D. Fax: 972-566-8837
Dr. Pinky Tiwari. her office is in St Luke’s Medical Towers. She has privileges at the hospital.
John D. Rossi 920 Medical Plaza Dr. Suite 470 The Woodlands [north houston, near bush int’l airport], TX 77380
Houston’s Medical Center named Dr. Steven B. Inbody. He is a board certified neurologist who specializes in CIDP.
his website at: [url]www.neurologybulletin.com[/url]
Abilene – Dr. Paul Harris. He is the only one I found that has any knowledge/experince with GBS in Abilene.
suburban hospital (West Houston Hospital, Dr. Gaer NOT recommended) by someone here.
gene gbs 8-99
in numbers there is strength
AnonymousNovember 5, 2006 at 12:45 pm
Curious – why did the neuo change your dx from GBS to CIDP?
I can tell you that I experienced tightness/stiffness in my arms and legs after GBS. This lasted for approximately 2 years, although it was better at some times that others. I still do experience this feeling occasionally, although only mildly, at 2 yrs 8 mos. post GBS.
There are many, many residuals that can last for years after GBS. Residuals don’t necessarily mean that you have CIDP. More reading on this site (including old posts) will enlighten you about some “typical” residuals and symptoms.
You will find that most medical professionals are not very familiar in detail with GBS/CIDP, and often are misinformed, so don’t take what they say as gospel.
AnonymousNovember 6, 2006 at 9:01 pm
I am 6 1/2 years post GBS and have had residuals all that time. The paralizing never went out of my left leg. I would call it a type of stiffness. Sometimes it makes me limp because it just won’t move. It hurts and is numb too. I try to exercise my feet even though I can’t tell they are moving, I look to ever so often to make sure they are.
The other foot is also stiff, I am worried that the circulation is going bad so I really watch their movement and don’t baby them.
The residuals are a pain in both ways. Some days it is hard to say, “I can put up with it.” Frunstration and this disease go hand and hand. We all have different levels of GBS residuals but remembering back of being in bed on your back puts these in perspective.
Many times I come back to the forum, just to understand that it is not all that bad. This is going to happen and I am ok. I just have to do things a bit differently, and things will work out.
I hope they find your problem and give you some relief.
Good Luck Bruno,
AnonymousNovember 6, 2006 at 9:14 pm
i’m 5 years post gbs and i still feel stiffness and tightness. it’s gbs residuals. i was paralyzed from the nose down and not vented either. definitely get a new neuro. hope you find one that helps you feel better both physically and mentally for you own self peace of mind.
AnonymousNovember 7, 2006 at 2:46 pm
I am almost 10years post and am at home today from work. I woke up so sore and hurting all over… I know from experience I did too much this past weekend and am paying for it now. I have been through some medication changes (tried Cymbalta – from hell) and go back to my regular doctor next Monday for a scheduled recheck on meds. I plan to ask him to increase amitryptiline back up to 50 mg. He may want to refer me to a neuro again (insurance keeps changing on who is on my list) if he thinks I need a medication change like back to neurontin. But I really don’t think so as from these years of experience I know my body.
I am up after sleeping until 1:00 p.m. (went to sleep at 10 p.m.) and feel a little better. I am a big advocate of REST, REST, and more REST. So I try practicing what I preach. I just don’t look forward to the attitude of my boss tomorrow… not much that I can do about that.
Hope this helps.
AnonymousNovember 8, 2006 at 3:29 am
Bruno, as others have said, stiffness and tightness are residuals or leftovers from GBS. The symptoms of GBS and CIDP are, muscle weakness, pins and needles and often pain. The pattern of the two diseases is very different; GBS is an acute illness coming on rapidly and burning out at about 4-6 weeks leaving some muscle weakness, pins and needles and pain plus other residuals.
CIDP is a chronic condition which is active for more than 8 weeks, it tends to come on slowly and gradually builds up. In essence there are two types, or patterns, one is the progressive form with a relentless deterioration until it burns out, the other the relapsing type which seems almost to get better between attacks.
Like all things in medicine, nothing is black or white, so there can be some overlap between GBS and CIDP. DocDavid (progressive CIDP)
AnonymousNovember 9, 2006 at 12:59 am
Thanks everyone for your most helpful information. Doc David its so good to see that you are back. 😀 😉 🙂 Take care
Almost forgot, I was looking over some of my recent lab work and the main thing my neuroligist was interested in was a positive ANA. He said that the ANA has a speckled pattern. This may be why be sent me to all those other doc’s. Take care again
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