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AnonymousJuly 17, 2010 at 1:43 pm
Hi Everyone….I am new to this forum, and have been diagnosed with CIDP in April 2010. I have had two IVIG treatments, the first one helped a little, the violent tremors in my hands subsided, temporarily. My second treatment produced no improvement at all. I developed foot drop at the onset, and now have to wear a brace. My neurologist feels that physical therapy is my only alternate treatment until my nerves and muscles start responding, and perhaps then the IVIG will have a better outcome. I have recently relapsed, and now I feel that I have no options but to live like this. I have a great pain Mgmt. dr. who is helping me with the pain, which is so severe, I feel like it would be a blessing if I just wouldn’t wake up. At times I am so frightened, I cannot believe that this has happened to me….how did it happen? Again, like the rest of you, no answers. I am so relieved to have found all of you, trying to explain symptoms to someone that doessnt have the disease is difficult. I hope my neurologist will suggest another treatment plan, so many of you did not respond to the IVIG, and you were able to find alternate treatments. I need advise, and information, if you can help. So nice to have met all of you, and hopefully I can stop spending 18 hours in bed, and start enjoying my life a little. I’m not asking for a lot, just a little better quality of life than I have. I would LOVE to take my dogs on a walk again! That is my long term goal, and I try to exercise, but am so weak it is difficult. Do any of you have such extreme muscle loss? Have you been able to rebuild your muscles?
Thanks for listening!
July 17, 2010 at 2:58 pm
Hello Carol welcome. This is a great place to help you heal. EVERYONE here that I have met is friendly. We all come from different walks of life but share in our pain and surprising pleasures.
I can offer no medical advice and am sorry that I can’t help your pain. I too want to sleep and never wake up at times. Even after a great day yesterday, I was quietly crying (I shouldn’t listen to Pink Floyd whenI’m sad!) My wonderful wife Lisa asked if I was OK and all i could answer was “I’m tred of hurting”.
The only relief I have found is to be blindly positive about recovery. All of us here have had to realize how important little things are and also to acknowledge important things we overlooked before getting sick, namely family, friends, and for many faith. At a minimum I strive to be cautiously optomistic and yes as mentioned I allow for times to be sad about my current state. We are all here to help. Please check your messages.
AnonymousJuly 17, 2010 at 4:51 pm
Welcome to the forum. My husband has CIDP-MADSAM and has had treatment with IVIG monthly since the Fall of 2007. He has an atrophied rt. hand and had foot drop–due to misdiagnosis and no treatment for nearly 3 years. But the IVIG has prevented further deterioration. His symptoms are motor with very little sensory so he has no real pain. His hand will spasm at times and we apply heat and it seems to resolve. Thank goodness he doesn’t have sensory pain as he is a bit of weanie with pain i.e. the days that he has the IVIG he is vocal about the needle being inserted and how it feels after until I am ready to strangle him but I just act very sympathetic until it passes
. He would not handle the pain that people with sensory symptoms describe. He has lots of fatigue though and takes Alertec and that helps quite a bit. I found that it took almost a year of IVIG for him to return from the state that he was in before treatment i.e. loss of use of hand(couldn’t hold a cup, turn a car key, use eating utensils etc.), tripping, poor concentration, no energy, apathetic etc.
Now he is almost himself again, but needs to really pace himself. He is a resiliant type and even with an atrophied hand with permanent weakness he has returned to trimming our horses feet which takes strength and dexterity that he still lacks. So he trims and I hold the horses foot and take over and do a bit of rasping when he fades. I think it is important to keep trying and not let the illness take over your life. I have MS and my neurologist told me years ago “not to become my illness”. So with my husband I have really encouraged him to not to get too caught up in his symptoms as they will always be there and may even worsen–I encourage him to do everything as before but to rest in between doing. But I did wait until he was over the real acute phase to do the pushing. Concerning your muscle loss, I did notice with hubby that his “good” limbs got pretty flabby and flacid during that first year of IVIG because he had really lost his mojo to do anything and didn’t exercise much. Now he participates in everything and his muscles look normal other than on his right side with the permanent atrophy–hand is wasted and forearm is shrunken, and his rt. calf muscle is a little smaller than the left leg but it has gotten a bit bulkier with the exercise he is doing. I think you must be describing loss of tone since you have been unwell and in bed so much versus atrophy? Atrophy from the CIDP is not reversible, but loss of tone and facidity from illness can be addressed with an exercise program. And that exercise for you should be devised by a PT so that you don’t over do it in the beginning. I can’t really comment on other med. regimes as we have been lucky in that the IVIG is working. Hubby will relapse if he has a flu or over does it, but so far restorative rest and IVIG work for him. And it seems that a lot of people with CIDP relate to having irritable bowels issues or some sort of infection prior to getting CIDP so I have hubby take a good probiotic daily, Vitamin D 4000, and omega 3. We are more health conscious now with his diet as well–multi grains, as much organic as possible. One has to wonder how much all the preservatives and chemicals in prepared foods has been a factor in people developing all of these autoimmune diseases. We have two autoimmune diseases in one family. Good luck Carol.
AnonymousJuly 18, 2010 at 2:20 pm
Welcome to your GBS/CIDP family. You are not alone. So sorry you have this, lucky to be diagnosed already. I am 8+ years into it. Yes it is horribly painful. You & Northernguitarguy mentioned, it would be so nice to go to sleep & not wakeup. That would be nice. There were times I wished I was dead, but not suisidal. I am on med. for depression, happier now. Sorry for venting.
STEM CELL TRANSPLANT! Your own stem cells! Read all about it! Go for it if you can!
You are in my heart & in my prayers.
Love & gentle hugs, smitty
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AnonymousDecember 1, 2008 at 1:30 pm
I have a little bit of a story to tell.For years I was dealing with back problems and them in 2005 I blew my back out but good.I have L-4 & L-5 in my spine herniated and S-1 Ruptured. Thats a little background info.
February of 2007 I was diagnosed with GBS and spent five weeks in the hospital (a week in ICU) I had it from the top of my head to the bottom of my feet. Now its almost two years later and I’m having a heck of a time. I have taken Lyrica,Gabapentin,Viox,Arthrotec,Ibuprophen(Script),and I have taken tons of tylenol.These medications don’t help.
At this juncture the only thing that helps is Hydromorphone Cotin 3Mg and Dilaudid 2Mg twice daily.
The pain in my lower back and legs can be debilitating.It’s two years now and I’m still sore and depression has got the better of me.
Is there anyone else out there that only gets relife with Opioids?.
AnonymousDecember 1, 2008 at 3:21 pm
Hi Alice, I was looking at your blog and I have some background information for you.I’m a 39 year old male married to a terrific woman with a five year old daughter.I’m from Nova Scotia Canada. The pain that we live with on a day to day basis is gruelling and the hell I went through getting diagnosed was a horror story.I have a sincere hope that you are doing fairly well these days.
AnonymousDecember 1, 2008 at 4:08 pm
Have you ever run out of vicodin? I have come up short on my dilaudid by 5 days this month.I’ll get some more after the five days.I had a terrible week last week and now I’m paying the price. I figured that I would be like people you see on T.V. shaking and vomiting from withdrawl but,I have none of that.It’s just the awful pain that is driving me insane.
The medical system in Canada is the same as the U.S.,anthing that resembles an opioid is treated like plague….including the people.How are you doing lately?.
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AnonymousApril 30, 2008 at 6:59 pm
I’m looking for information about Miller Fisher Variant…I had this in 1997 and recovered very quickly. I’m wondering if anyone knows of lasting effects this can have. I seem to be sick all the time and have a lot of muscle tension problems, and lately problems with my eyes becoming very tired and blurry. Any ideas if these can be any side effects? A lot of information was withheld from me by my parents and doctors since I was still considered a kid at that time, so i’m trying to figure all this out.
April 30, 2008 at 10:48 pm
Welcome, glad you found us we will tell you anything you want to know if we in fact do know. We don’t hold anything back here ha ha! Did you have mf gbs or mf cidp? I will call my friend Kelly (hi friend :p ) who’s daughter Emily has mf cidp. She can help you as well as many others. Be patient they will answer, it has been a little slow lateley, but some one will be by soon.
Dawn Kevies mom
AnonymousMay 1, 2008 at 2:36 am
Can you fill us in a little more on what happened before and what is happening now so that we can help answer questions better.
Is what is happening now like what happened 11 years ago? Such as did you have blurred vision and muscle fatigue then?
What do you mean by sick all the time?
Is the muscle fatigue all over or mainly in the head and neck?
Did you completely recover with no left over concerns (residuals) before–meaning that what is happening is a significant downward turn?
People can have worsening of symptoms with a number of things–particularly a new major time of energy expendature or stress–even “good stress”. For example, if you have a young baby or a toddler, you could have new physical stresses, less sleep, and spend a lot of time talking and smiling at him/her. Or as a special education teacher, you could be “working” extra hard to help your students. Blurred vision can result from lots of computer time or reading more than you used to do. People often do not heal completely after these illnesses, but may be “good enough” for most of daily life to seem pretty normal. There is also a phenonema of post-GBS neuropathy that can happen years after. This is not return of the illness, just a new presentation of symptoms that damge had been done.
It is worth noting that people can also relapse, so if your symptoms are like you starting having when a teenager, you should see a neurologist again. Talk to your parents, if you can. Ask to get the information packet from the foundation. It has a lot of practical information. See if the blurred vision gets better if you do less with your eyes in a day.
WithHope for cure of these diseases.
AnonymousMay 1, 2008 at 5:07 am
I have MF/CIDP, the blurred vision and dry eyes COULD be a revisitation of your symptoms or it could be that your previous illness left you susceptible to fatiguing those muscles/nerves. It would probably be helpful for you to try to “interview” your parents to see how much they can tell you about your previous symptoms (assuming you don’t remember yourself.) Having a baseline of “this is how I was at my worst” can help you figure out whether you’ve got new symptoms, you’re just tired and overdoing it, or you’re spending too much time in front of the computer monitor. 😉 The fact that you recovered pretty quickly is encouraging but possibly you’ve been left with residual symptoms – them nerves just don’t work as well as they used to. My disease is relatively recent… started in 2005… so I can’t tell you long term whether the MF symptoms come back after they go away but there are several/many people on the forum who can provide some insight on that.
AnonymousMay 1, 2008 at 10:33 am
Hello – and welcome to our forum. You are getting some good information here. Some are expierencing post-GBS symptoms many years later. Also – you may not be “blinking” your eyes well. My eye dr said I have a “puny blink” and that causes dry eyes which evolved into a dry patch on my lense that blurred by vision. Eye drops got rid of that problem. Unfortunately you are in a profession where you are exposed to many infections and germs. Children (bless-em) are just little incubators for all that stuff, so if you are run down you catch it. It is a vicious cycle. Take care and come back for any assistance I can give. Happy to know you.
GBS-MFv 1993 and 2004
AnonymousMay 1, 2008 at 5:11 pm
Hi everyone and thanks for the help 🙂
When i was diagnosed in 97 i had GB-MF. They thought it was an inner ear infection until I had no reflexes. Then they rushed me to the neurologist and to childrens hospital all in one day. My syptoms at that time were complete uncordination when walking (walked like a some who was drunk), no hand eye cordiation, dialated pupils, and muscle fatigue in my neck/shoulders, and extreme overall fatigue. After having the imunoglobulian therapy I was back out of the hospital in 7 days walking on my own ( i refused using a walker/cane/wheelchair…gotta love teenager attitudes). When I went back for the checkup about a month and half later I was full walking with complete cordination and was told that I was “normal” again.
The nerve regrowth seemed to be the longest process and can still feel tingly sensations in my hands and feet. My one eye gets very droopy when i’m tired. Since that time i’ve had the worse time with very tense muscles in my neck, back of head, and back. It doesn’t seem to matter whether i’m relaxed or tense it feels the same.
Since i’ve had GB-MF i seem to get viral infections very easily. It doesn’t help that now i’m a very stressed out special education teacher so the germs are always around.
Lately though it seems my eyes are blurry and tired more often and I have actually limited the amount of time infront of the computer and reading. I’m having more tension with my muscles and seem to be more clumsy when walking and with hand-eye cordination.
I was told that I had made a full recovery and have never seen a neurologist since I left the hospital in 97 after my check up. All my regular doctors i’ve seen since then (moved around some) have not believed me when I state these syptoms and say i’m just paranoid that something will happen.
May 1, 2008 at 6:57 pm
We have cidp, so I cannot offer detailed info on gbs as we are not as experienced in that category. That being said, the gbs DOES NOT make you more or less suseptible to virus’s. Your exposure to children just puts you in a vulnerable position. One connection that the two DO have is that when your immune system turns on to ward off the virus, it can irritate your residuals from gbs. Many on the site mention stuggling a little more when they are sick.
Regarding the increased weakness you are experiencing, maybe you can get your old records and ask for a ncv/emg test to compare to an old one to make sure that there is no further damage, just to be sure.
Also, some people start to notice for a lack of a better way to explain it more residuals at about 10 years post. They liken it to post polio symptoms. Maybe you can pm a member named Ali, she is good at explaining gbs and residuals.
Dawn Kevies mom
AnonymousMay 2, 2008 at 9:30 pm
My daughter was dx’d at 4 with MF-CIDP.
I have a few questions. At what age were you when you were dx’d? Do you feel that you are progressively getting worse? Have you had any immunizations lately?
There are a few different possibilities, as I see it.
1) It’s residuals
2) It’s a recurrence of your GBS. Although this is rare with only a 3% relapse rate.
3) Being around the germs is just making you feel sick.
If you are progressively getting worse then I would say that it’s not residuals. And if you’ve had immunizations then they could have brought about a relapse of sorts.
I would find a REALLY good neurologist and ask him/her to do an EMG & an MRI w/contrast of your brain. If you do indeed find a good neuro then he/she may want to also perform a spinal tap to check the protein in your spinal fluid & also do an MRI of your back with contrast.
PM me if you have any questions.
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AnonymousJune 19, 2006 at 10:05 pm
I was diagnosed with GBS about a month ago. I spent 5 days in the hospital getting the IVIG. After I got out I almost felt normal. It has been about three weeks since I got out of the hospital and some of the same symptoms have returned. Is this normal? The doctor said I had a mild case and the symptoms should not return. Its all just really hard to deal with not being able to move the way I normally do. Just glad I found a place I could talk about it.
AnonymousJune 19, 2006 at 10:12 pm
cmthomp2, welcome to the family. make sure you rest and don’t over do things. residuals can increase if you over do. gbs also stands for getting better slowly. take things slow and steady and rest when your body tells you to. don’t go by what others tell you, only you know how you feel. its not in your head. alot of us have been told its in our heads, but we know it isn’t. make sure you rest and take care.:)
AnonymousJune 19, 2006 at 10:43 pm
Well I went back to work two weeks after I got out of the hospital. But the second day back is when the symptoms started to show back up. I thought I had been taking it easy even at work so I’m not sure what I should do now. I have an appt. with my neurologist on Friday I hope he can give me some relief.
AnonymousJune 19, 2006 at 11:26 pm
hi cmthomp2& welcome,
ditto cheryl & jerimy. you are prolly doing too much no matter how little it may seem. cut back to 4 hr/day or take a month off from work. on the odd chance you deterioate rapidly, go immediately to the er. it could be, although doubtful, another attack. take care. be well.
gene gbs 8-99
in numbers there is strength
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