New to Forum!!! GBS/CIDP Sufferer Here is my story. Input or advice appreciated.
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July 24, 2008 at 7:59 pm
MY GBS / CIDP Story
Hi Everyone,
Where to begin???
I contracted GBS in 1988. I was in Basic Training with the US Army and got sick about 2 weeks after starting training. I did go through the entire regimen of shots and vaccinations when I began Basic Training. It took nearly 2 months to finally get a diagnosis of what I had. I went untreated the entire time while I was under the initial GBS attack. When I started Basic Training I was able to do 25 push ups, but by the 3rd week I was unable to do any. I remember having difficulty brushing my teeth, buttoning my shirt, and tying my shoes. I was mostly affected in my upper body. I did have trouble with severe weakness in my legs. I was never hospitalized.
I was finally able to go back into Basic Training in September of 1988. I still had extreme difficulty running. I graduated Basic Training in November of 1988 and went on to serve 4 years in the US Army. I always had physical issues especially with running, but somehow was able to complete my 4 year commitment.
I filed an initial VA Disability Claim in 1992. The VA came back with a rating of 10% for basic nerve damage. I was satisfied with the reward. I knew I had physical issues, but considered them minor.
I never followed up on my condition or sought additional care or treatment until 2007. My condition was fairly stable and I was willing to deal with my ‘minor’ disability issues.
Beginning in 2007 my physical condition began to significantly deteriorate. I was having a lot of problems with my hands and arms. Lots of weakness and numbness. I reopened my VA Disability Claim in the Fall of 2007. They sent me to do a complete Neurological Exam which included Nerve testing. I was found to have severe entrapments and neuropathies in both my arms and legs with the arms being most severe. They classified my case as now being CIPD.
The Spring of 2008 the VA increased my Disability rating to 50% for my upper body and rated me at 0% for my legs
I did start IVIG treatments in April 2008. After two IVIG treatments I contracted Meningitis. I was hospitalized for 5 days. I was discharged for 4 day and then was hospitalized again for being Neutrapenic for another 2 days. So this ended my IVIG treatments.
I am weighing my options on whether or not to try another treatment or learn to live with what I have.
Recently my legs have significantly deteriorated. I have a foot drop, numbness, and weakness in my right leg. VA has provided me with a brace to helps with the foot drop.
I am once again opening my VA Disability Claim to address the issues I have with my legs.
I continually suffer with severe fatigue, hip pain and back pain (due to foot drop), and chest/breathing pain. I have been tested for asthma, but the test come back negative. I am assuming that it a GBS/CIDP issue.
I am having issues at work. I work for the USPS. I can no longer do my job fully. I am limited in what I can do. I have ask for special consideration, but they are very reluctant, since my conditions was acquired OFF the job.My fight continues at work. I do not know how it will turn out. I do have concerns about eventually losing my job. If my physical condition continues to deteriorate rate at the same pace it has over the last 18 months it is only a matter of time before I will not be able to work anymore.
I just wanted to share my story and hear what other have to say.
That’s for reading and hanging in there.
Your new friend,
Chris
GBS:1988
CIPD: 2007
MENENGITIS due to IVIG: 2008 -
July 24, 2008 at 8:18 pm
Hi Chris!
It sounds like you’ve been through a lot! I’m glad you managed to find your way here, though. I recently joined the forums myself and have found everyone to be extremely knowledgable and supportive. It’s been a real blessing to me and I’m certain it will be to you, too!
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July 25, 2008 at 7:38 am
Chris,
Don’t give up on the treatment. I got meningitis with every IVIg treatment for eight months, it’s painful, it’s nauseating, it’s anti-social because you want to scream at everyone who speaks above a whisper. However, for the past three months we’ve been adding prednisone to the pre-treatments and I’m down to just a mild headache for a few days – no meningitis. I understand your reluctance to try that again – trust me I do – but there are things you can try to help alleviate the risk of meningitis. What brand of IVIg did you use? What rate did they start you at and then how quickly did they bump up the rate? Did you get any other pre-medications? Do they think you became neutrapenic due to the meningitis or the IVIg? Have they offered you other treatment options? IVIg is only one of many options, there are others that may be less devastating to you.About the chest/breathing thing – yes, it can be associated with CIDP. There are lots of us on the forum who have had difficulty breathing, myself included, due to nerve damage or muscle weakness. If this is a new symptom for you, or seems to be getting worse, then I think you need to get in to see your neurologist as quickly as possible. For me it only took a week or so from when I noticed chest pains to not being able to breathe… everybody is different but you shouldn’t try to be a hero about it.
I’m sorry about your job too, you would think the government would be somewhat sympathetic – however, I worked for the government my entire career so I know better. In my last job my oh-so-politically-correct boss told me she didn’t think I should try to come back to work because I’d just be a liability since I’m not as strong as I once was. And just so you know, she is gone now and they are begging me to come back as soon as I can manage it. 😉
Don’t give up, you’re fighting for your right to live as close to a normal life as possible and you are worth it!
Julie
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July 25, 2008 at 9:44 am
Hi Chris,
I am sorry that your treatment experience turned out to not work so well.
If I had that happen to me, I would be a little reluctant to jump back into that one as well. It sounds like you are still suffering quite a bit. Have the doctors discussed trying the other treatments available?? It seems that some folks find what works for them relatively quikly while others need to bump around and experiment more. I am hopeful that you will find some relief with some form of treatment. I too am struggling with the job thing. It stinks.
Good Luck Chris! -
July 25, 2008 at 11:53 am
It sucks that you got GBS/CIDP from immunizations taken to serve our country. I have the utmost respect for anyone who is willing to do that. So thank you for your service.
You cannot just learn to live with CIDP without treatments. CIDP is a progressive disease. It is extremely concerning that you are having so many breathing problems. CIDP could be affecting your lungs & that is SO NOT good! You need to get some kind of treatment ASAP.
You need to contact your neurologist and DEMAND treatment…like NOW. I understand your fear of doing more IVIG but there are others out there who have had the same reaction that you did. Sometimes you need to switch to a different brand, be infused at a MUCH lower rate and/or get prednisone before or after your treatment.
There are also other treatment options available to you besides IVIG. In your case, I think I would ask for plasmapheresis first. That way your blood will get cleaned out & then you can find the right immuno therapy for you.
Call your neuro today & get moving on this. Trust me…you will be thankful that you did.
Good luck,
Kelly
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New to Forum!!! GBS/CIDP Sufferer Here is my story. Input or advice appreciated.
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July 24, 2008 at 7:58 pm
MY GBS / CIDP Story
Hi Everyone,
Where to begin???
I contracted GBS in 1988. I was in Basic Training with the US Army and got sick about 2 weeks after starting training. I did go through the entire regimen of shots and vaccinations when I began Basic Training. It took nearly 2 months to finally get a diagnosis of what I had. I went untreated the entire time while I was under the initial GBS attack. When I started Basic Training I was able to do 25 push ups, but by the 3rd week I was unable to do any. I remember having difficulty brushing my teeth, buttoning my shirt, and tying my shoes. I was mostly affected in my upper body. I did have trouble with severe weakness in my legs. I was never hospitalized.
I was finally able to go back into Basic Training in September of 1988. I still had extreme difficulty running. I graduated Basic Training in November of 1988 and went on to serve 4 years in the US Army. I always had physical issues especially with running, but somehow was able to complete my 4 year commitment.
I filed an initial VA Disability Claim in 1992. The VA came back with a rating of 10% for basic nerve damage. I was satisfied with the reward. I knew I had physical issues, but considered them minor.
I never followed up on my condition or sought additional care or treatment until 2007. My condition was fairly stable and I was willing to deal with my ‘minor’ disability issues.
Beginning in 2007 my physical condition began to significantly deteriorate. I was having a lot of problems with my hands and arms. Lots of weakness and numbness. I reopened my VA Disability Claim in the Fall of 2007. They sent me to do a complete Neurological Exam which included Nerve testing. I was found to have severe entrapments and neuropathies in both my arms and legs with the arms being most severe. They classified my case as now being CIPD.
The Spring of 2008 the VA increased my Disability rating to 50% for my upper body and rated me at 0% for my legs
I did start IVIG treatments in April 2008. After two IVIG treatments I contracted Meningitis. I was hospitalized for 5 days. I was discharged for 4 day and then was hospitalized again for being Neutrapenic for another 2 days. So this ended my IVIG treatments.
I am weighing my options on whether or not to try another treatment or learn to live with what I have.
Recently my legs have significantly deteriorated. I have a foot drop, numbness, and weakness in my right leg. VA has provided me with a brace to helps with the foot drop.
I am once again opening my VA Disability Claim to address the issues I have with my legs.
I continually suffer with severe fatigue, hip pain and back pain (due to foot drop), and chest/breathing pain. I have been tested for asthma, but the test come back negative. I am assuming that it a GBS/CIDP issue.
I am having issues at work. I work for the USPS. I can no longer do my job fully. I am limited in what I can do. I have ask for special consideration, but they are very reluctant, since my conditions was acquired OFF the job.My fight continues at work. I do not know how it will turn out. I do have concerns about eventually losing my job. If my physical condition continues to deteriorate rate at the same pace it has over the last 18 months it is only a matter of time before I will not be able to work anymore.
I just wanted to share my story and hear what other have to say.
That’s for reading and hanging in there.
Your new friend,
Chris
GBS:1988
CIPD: 2007
MENENGITIS due to IVIG: 2008 -
July 24, 2008 at 8:59 pm
Chris-welcome. You have lots of issues that hopefully many of us can help you with. I have to first commend you on serving our country and making it straight through your entire enlistment!!!!!!! Thank you for that.
I have been receiving ivig 7-8 years for cidp, and I know the menigitis is an issue with it, as you, will read on other posts, I have not developed it ever after ivig. The most recent thing that has really helped me is premeding with tylenol and benadryl prior to my ivig and taking motrin half way through my daiily infusion(2 days every 2 weeks). No longer get the severe headaches and the rate has been slowed. I wonder if that kind of thing could be added and try a very slow rate with you again to stop the demyelination process and start remyelination. Are you taking any steroids, immunosuppressants, and nerve pain medication?
It seems to me that when you started at UPS that the preemployment physical would have shown your disability and limitations-its a pretty physical job with stop-start deliveries and lifting heavy packages. My neuro has me on a 8lb wt lift limit. They can say that it was an off the job acquired condition, but it affects your job currently every day.
Have you had any recent tests or second opinions from the VA? Maybe, they will increase your % ratings. CIDP is tough—what works for one doesn’t work for you. And you need to find out what works best for you. Whether it be ivig, pe, steroids, and so forth. And having to go through VA is even more challenging for you, but it sounds like they have been pretty cooperative, now get them aggressive and get you stable.
Finally as to working, only you and your emplyer and physician can work this out. I was taken off work immed. and am now receiving disability social security. Not what I wanted, but what my doc said, and now I know I can’t work when my good days and bad days always vary.
Good luck Chris. Again, welcome, and let us know how you are doing.:)
Emma
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July 24, 2008 at 9:03 pm
Chris, when you have time, if you haven’t already checked it out, read some of those posts and see if they help too. Emma
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July 25, 2008 at 11:43 am
Hello and welcome Chris,
Trying to find answers and and the uncertainty of all that is going on takes an awful emotional toll.
When I got GBS in ’85 I was told I was cured and that one doesnt get it again. Needless to say, lack stamina, fatigue and mainly foot pain after that was a problem, but I would always ignore it in the hopes it would go away. About 6 years ago, I thought I was getting GBS again, even went to the ER as I was finding it difficult to breath….however, long story short, it turns out that often many years or decades later, the body often reacts this way because of the damage that was done so many years ago, and we have to live with this in our lives – a vicious circle at times of almost being bed bound because of fatigue and pain (not to mention depression) followed by times when it seems one can function normally for a while. However, yours does seem to be a case of CIDP because from what you say, it is progressively getting worse over the months. In that case, because your body is ‘under attack’, you definitely do need to stop the progression and it is important for you to find a treatment that will help with this. Also because you are going through all these stresses, it is very important to look after your mental health. This is often overlooked, and the patient often does not feel or want help with this. If you do feel overwhealmed and possibly depressed, it is important that you try and sort it out as it goes a long way in helping to deal with what is going on physically – i was someone who would not take med’s for depression (I hate meds period), but I now realize what a huge mistake that was!
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July 25, 2008 at 2:55 pm
Chris,
It’s nice to meet you. You have the best forum name ever 🙂
If you are unable to use IVIG, perhaps one of the immunosuppressants would help you, Rituxan etc.
We are here to help however we can, feel free to meesage me anytime if I can help.
Jerimy
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July 26, 2008 at 2:02 am
Hi Chris, Welcome to The Family. I want to Thank You for serving Our Country, [COLOR=olive]Go Army!!!!!!!:) [/COLOR]
[COLOR=black]Feel free to ask questions or just vent when You need to, we all understand. Take Care.[/COLOR] -
July 26, 2008 at 11:49 am
[B]Hi Chris,
Welcome to the family. So sorry that there was the need to find us though.Meningitis unfortuanely is one of the things that can develope from IVIG. A few people here had developed it after using IVIG, but with anti-biotics they were okay.[/B]
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