Maybe for once I can help someone else. What makes you think this is about residuals. I guess I need to know your story. I am just asking becuse so many here have mentioned before that they ended up with cidp after gbs. Could that be your case? I am of course not a doctor!!! I am thinking about neuropathy in general. Even though Bill has Amyloidosis it is still neuropathy also. I have noticed one foot is alot weaker than the other. I saw this a couple months ago and mentioned it to the Clev doc when we went. Well 2 days ago he walked too much and I even had someone tell me they thought he was much better at walking now. Low and behold the next day he suffered for it. He had walked too much and now could hardly lift that one foot up. And yes he is now getting numbness in his hands so it is still progressing in the nerve part of this disease.

So could you have cidp ? Has this been discussed?

Maybe for once I can help someone else. What makes you think this is about residuals. I guess I need to know your story. I am just asking becuse so many here have mentioned before that they ended up with cidp after gbs. Could that be your case? I am of course not a doctor!!! I am thinking about neuropathy in general. Even though Bill has Amyloidosis it is still neuropathy also. I have noticed one foot is alot weaker than the other. I saw this a couple months ago and mentioned it to the Clev doc when we went. Well 2 days ago he walked too much and I even had someone tell me they thought he was much better at walking now. Low and behold the next day he suffered for it. He had walked too much and now could hardly lift that one foot up. And yes he is now getting numbness in his hands so it is still progressing in the nerve part of this disease.

So could you have cidp ? Has this been discussed? Or am I off base.

In my opinion, it sounds like progression of symptoms, some add ons if you will. It is common for gbs to advance into cidp, mine did. Did you have an illness lately? cold, flu, etc? Maybe try to get more prone rest and see if that may lessen your symptoms. It could be your body telling you to slow down, rest abit, take it easy for awhile. Take care.

You know what I think. We went 6 months thinking it was gbs residuals. It is not that it advances to or turns into cidp, it just was mis-dx. I think I recall you did have additional ivig after first round? If so, only you know if there was marked improvement. I feel that during Kevin’s 6 month confusion, times he felt better were because he was learning to adapt to the pain and weakness, it wasn’t really getting better. Finally, we just did the ivig again and the improvement was remarkable in hours. We had our answer. If ivig does not have that profound of an affect on you, maybe you could get another ncv/emg and compare to the initial one. Or, to dispute gbs or cidp all together, there is the dreaded nerve biopsy. If it showed no demylienation ever, then you can dispell any confusion and go in another direction for a possible different dx as I think I remember was a possibility your doc was contemplating. I know you know all of this stuff, and I feel kind of stupid or pushy even stating the obvious. But sometimes when it is you as a patient, your are not as removed or objective as you would be if it were you looking in, not out. I hope you get answers soon, it is not fair to have you not be able to help the children you love helping because you are not feeling well. I am praying that you get answers . Best wishes and prayers.
Dawn Kevies mom
ps, I too am worried about Kevie lateley. We are decreasing ivig by 10g every three months. Started at 105, now down to 80 every month. Plus the fact that he weighs more, it is less. He has been tired lateley, it was right after treatments (about 10 days) he has been stressed about school. don’t know why, he is getting all A’s. I think he also realized it was just his 2 year anniversary. Coincidentally, he was the worst each time in the month of Oct.? This crud is so confusing. I have not been this stressed or confused and hopeless since last year. I have to get out of this funk!

As awlays with the caution that you should speak with your doctors, I have had the same progression in my hands. My hands were never fully paralyzed though they were stiff and I had trouble handling things, but now I wake up every morning and both hands are numb and very stiff. My neurologist told me it was residual nerve damage even though my hands are worse than they were, at least temporarily. So I think the numbness in both feet and hands can be residual even if it feels worse. GBS of course does not progress into CIDP but going for a new tests to confirm it is not progressive might be a good idea. I never did and am sure I do not have CIDP but why worry when you can find out. Good luck. Jeff

Oh With Hope, I am sorry to hear you are having a problem and you have been a source of answers for me from time to time. First I would tell you to go get checked. Even with someone new if you have to. It is very easy to try and figure out our own diagnosis, symptom tracking on the internet, etc. and we may indeed be missing something. I don’t know how long you have had the current symptoms or are you just slowly realizing that things aren’t as easy as before? I am a little similiar to Kevie in that we did a GBS thing for quite a few months and my “improvements” were most likely me compensating and learning how to do things differently. But at some point in PT I realized I just couldn’t do anymore. I couldn’t lift the same amount, which was nothing! It was all I could do to get through each day. My first IVIG, like Kevie’s and others, was a miracle and I walked to the neighbor, etc. Eventually we did get the CIDP diagnosis. I am hoping maybe it is just exhaustion, but you would ease your mind to just get tested again, bring up the CIDP question, ask for a trial of IVIG or maybe even steroids but I am opposed to that long term. Good luck and keep us posted….Gabrielle

Gabrielle, With Hope too!
You made me realize I did not sound sympathetic to our great friend With Hope, just methodical. So With Hope, I am so sorry that this crud is troubling you!! I too should have prefaced my post accordingly. I think I need to work on being a little more gentle and then go into my methodical mode. I hope you can figure this out soon. I cannot wait to meet you and hug you and thank you for all of your help with my sweet little Kevie!!!

Dawn Kevies mom

WithHope,
So sorry you are having problems. Hopeful it is residuals and not progressive. You are a wonderful person and do so much to help others.
My best to you
Shirley

Hi With Hope,

We haven’t met yet and I am really new to the forum since I was diagnosed in the beginning of August. While I went all the way down to the bottom I am thankful that I recovered very quickly. So quickly that sometimes I forget to be grateful I only have my residuals to deal with. I too just got back from a busiiness trip just last night and it was go, go, go for three days and throughout that time my feet and the backs of my knees were just killing me if I didn’t get off of them. I’ve done it before and it seems every time I try to push through days without a nap or something the more the residuals remind me I’m a recovering GBS patient instead of my normal superman routine. So I hope that is all with you like I hope it is with me. Please let us know if the change becomes more permanent.
Cheers!
Johnny Mac

I was wondering the same thing. I have been having a lot of muscle twitching and my calf and thigh muscles are really aching lately. It is just as you said — I feel like I have overdone a workout.

Well I fall into this crowd but mine is all over with the muscle twitching. Lately it has become very violent all most like a cramp n a way but it doesn’t hurt. I have the burning and aching feeling also and would like to know if this is a false reading because of the nerve damage.

I have felt the same aches and pains – like a hard work out – on a regular basis ever since I was first DX’d in 1993. I have seasonal allergies and found out that my antihistimines I needed to take for those made the aches and pains worse. So now, if an unexplained ache occurs I look for an outside trigger, however a lot of the time there is no explaination I can find. I have just accepted the fact that my body has a short circut in it and wierd things happen.
Alma
GBS-MFv-1993 and 2004

So sorry to share that at almost 11 years post, I still go through this same stuff. It is a sign of overdoing it. And I still cuss at the whole situation. My best friend is my heating pad – it does help a bit. Good luck to us all 🙂

Hi every one, it have been long time since I look last time, Im over my head in candlemaking but Im getting little weak becouse of diarrhea it is getting worse and I cant hardly eat then I have to run to the bathroom, Im feel that Im starting to eat very little and try to avoid eating much. my numbness is getting more in my feet, and also the pain I get in to the nerves. I walk more like drunk then I did. Im trying to rest but it is always somthing that keeps me away from taking a nap. I dont think Im relapsing but have you get some of this symtoms when you are so tierd it is hard to sleep. Hope some one can help me about this.
love and Hugs, Helga

It is hard to feel normal some days and think you are getting better and then “Wham” –weak legs, tingling, twitching etc. are back with a vengeance. Is this all due to some type of permanent damage done to our nerves and/or muscles? It is very hard to explain these feelings to my dr — especially on days when it appears I am walking fine! I have had a lot of muscle twitching and the dr. does not think it is related to the original diagnosis a year ago. I think it is residuals, or something I am going to have to “make friends” with because I think it will be back on a fairy regular basis — maybe for the rest of my life. I just got done with another series of MRIs — all normal and I still have the twitching 🙂 Do you think Neurontin will work for twitching?

Well Folks, the twitching and cramping resids lasted into my third year of recovery, but have pretty much disappeared now. My resids are weakness, lack of flexibility and numbness, all in my arms/wrists/hands, my neck and my lower jaw. EMG’s show almost no conductivity at the top of my neck/base of my skull, but other areas in arms and legs about 50%.
Neurontin/Gabapentin is the drug of choice for GBSers. It deals with the nerve pain like nothing else can. I take 1,200 mg. 4 X a day, and have for the past 3 years. There is a disputed side effect concerning short-term memory loss, which my wife also blames on the fact that I’m getting old.:D

My fiance Ben gets the same things from the waist to the toes. He’s on Mirapex to help the spasms and cramping and also takes Lyrica for the pain. His legs still feel heavy sometimes, but not as bad as they were over the summer. He’s 2.5 years out and was diagnosed with post-GBS in July.

Good luck!

Shannon

“It deals with the nerve pain like nothing else can. I take 1,200 mg. 4 X a day, and have for the past 3 years. There is a disputed side effect concerning short-term memory loss, which my wife also blames on the fact that I’m getting old.:D”
Im also using the neurotin/gabetine, and I have had trouble in my short – term memory, I thought I was getting old:D . I was asking my hubby if he had been awere of this and he looked at me and smile, yes dear I have found out you have very very short memory for numbers. So Im glad that Im not getting old, and can blame it on the meds *LOL*