Donna’s GBS Update: need medical help and prayer
AnonymousMarch 3, 2009 at 12:46 am
It seems like a lifetime ago, but it’s only been 15 months since I developed all the symptoms of GBS. I was once very athletic, and I rode my bike as usual, to get my flu shot in November 2007. And that’s been the last time I rode it, or been without paralysis and pain and the effects of a flu shot gone wrong. Since then, I’ve been so crippled in my legs and back that I have to use a cane and a medical walker. Most of the agonizing GBS nerve spasms and muscle contractions have subsided now that 15 months has passed, but I still have recurrences and a lot of damage to my body and mind.
Last week I was told by the person who ran the flu clinic, that the doctor I’ve gone to 3 times to report this, was the wrong person to see about my suspected case of GBS. And the hospital was the wrong place to go with it, though I was sent there for blood tests twice, and reported my symptoms there too.
What I was supposed to do was contact by phone the Regional Health Authority and report my symptoms to them. So that is what she has done.
And today someone left a message on my answering machine telling me that they had phoned to discuss it with me. AT LAST !!!
Lately I have been feeling much weaker and tired. I have constant nosebleeds, which started with the GBS symptoms, vision disturbances, headache, muscle pain and weakness, dizziness, loss of balance, difficulty chewing and swallowing, icy chills, tingling in the skin of my feet and arms. At times, I still have some bouts of nerve spasms which resemble electric shock. And the muscle contractions still come back at times. My short-term memory is very poor now.
My work as a music teacher has taken a severe downturn, and I’ve lost 6 students just over Christmas. I’ve done the best I can to relearn how to talk and write and read again, but I’m not the same person anymore. I just can’t hide the damage, and people have noticed it and reacted to it.
I don’t know what I am going to say to this Health representative. I’ve spent the last 15 months in such turmoil and strain, trying desperately to recover and keep working, but failing, and I am so discouraged. I don’t know why no one in the medical profession has dealt with my case yet. I’ve lived in this little town for 11 years, and have always rode a bike and been athletic, and for the past year I have staggered and shuffled with a cane and dragged myself along behind a walker. And now that someone is actually going to discuss it with me, I feel so inadequate. Basically, I don’t know what to do with these people. How am I going to convince any of these people of my medical needs, when so far they’ve just left me to my condition? All of this has been such a nightmare.
March 3, 2009 at 9:46 am
So sorry things are going so badly. Who is it that is contacting you? Is it regarding the connection between the flu shot and the gbs? Or is it a doc about your condition. If you are trying to pursue something in the connection between the symptoms and the shot, there is a web site for compensation of damages, not sure how easy or hard it is to get anywhere, but some have tried. About your current condition, have you ever had a ncv/emg from the original dx? If not, maybe you could get one now just to have as a reference point should things continue to decline. If they continue to decline, you could get another repeat ncv/emg to see if diagnostically things are worse as well. Perhaps it is no longer gbs residuals and possibly cidp, the repeat would be able to show evidence of new demylienation. if it were cidp, you could start treatments and start to regain your life. I bring this up only because your post seems to indicate that things may be getting worse. Has your activity level increased? Could that be the cause of the current situation.
Personally, we have not had any nose bleed issues, but Kevin is PLAGUED by DAILY headaches, migranes. As well, he has constant issues with sinus congestion while on allergy meds and decongestants. I really think there is a connection between the peripheral nerves in the cranial area and the sinus’s, there has to be because Kevin NEVER had these isues before cidp.
Write back and let us know how things are going.
Dawn Kevies mom
AnonymousMarch 3, 2009 at 1:09 pm
Who diagnosed you with GBS? I don’t understand the Health Representative. Is this someone taking your case against the flu shot manufacturer or someone to help you? Some of your symptoms don’t sound like GBS, like the nosebleeds. I think you need to visit a good hospital that has a neurology department, even if you must travel.
AnonymousMarch 3, 2009 at 7:53 pm
I’ve gone to the doctor 3 times and told him and showed him my symptoms,
Dec.07, June 08, Dec. 08. To date, he’s done nothing but take notes, and tell me he is too busy to discuss it. I’ve been to the hospital twice for bloodtests; showing all the paralysis/stroke symptoms and they sent me home after the bloodtests, one time even drove me home because I couldn’t walk. Nothing’s been diagnosed, or done, except by me. I’ve contacted everyone I can think of at this point, and have gotten nowhere. I’ve been left to deal with all of this on my own, and the crippling is worsening and now I have daily nosebleeds with or without blowing my nose. My head feels so dull. I’m loosing ground in my struggle to walk again; I’m losing my work because my students are quitting.
I saw the flu clinic coordinator in town last week, and she asked me if I was getting better, and I told her all about it again. She said that the Regional Health Authority was the correct place to report a bad reaction to the flu shot, so she went ahead and contacted them. She said that going to the doctor or the hospital is not the right thing to do, because they didn’t give me the flu shot, it was done at the public health community flu clinic.
Today I was able to discuss my problems on the phone with their coordinator, who is finally looking into this situation. She will contact me after she discusses our conversation with my doctor. At least there is some documentation about this now, though who knows what it will come to. I’m so sick and exhausted these days; a breakthrough and some acknowledgement, a diagnosis and treatment, something???, anything??? would be better than nothing, and what I’ve endured for the past 15 months.
AnonymousMarch 4, 2009 at 12:45 am
Don’t give up Donna! Just start by telling them what happened, when, and what the cause was. It will all come to you as you talk about it. Then itys your turn to request answers, treatment, your needs met etc. It will take a little more time to get things to where they should be for you, but don’t give up. The ball is rolling now, its going to go for all the pins, your way:) I’m Thinking of you Hun!!:)
March 4, 2009 at 5:12 pm
Well, now the paper trail has started. Be sure to keep documentation and names of people of whom you have spoken with. With that said, now you MUST get to another doctor, a neuro preferably. I would be suspicious of the first doc based on your comment he did not have time to discuss your situation. A blood test would not tell you mucj=h regarding cidp. At first thought I would think stroke with the nosebleeds, is it possible you are having mini strokes. Can you go to the er again? To figure out if it is cidp, a l/p would be a start and it may come back negative, so usually a nerve conduction and emg test is done to show slowed velocities and/or conduction blocks. has the doc actually said gbs? I also would be leary of the relationship between the agency working with your doc. Is it the cdc or the manufacturer of the vaccine itself. I cannot imagine that either is going to jump through hoops to help you or confirm a cidp/gbs dx following the vaccine. Presently, how you got it does not even matter, we have to get you feeling better and then get some paper work together about the reaction from the shot. Try to search on this site under the search engine, there were others who have tried to gain compensation, I just do not know the outcome or the time involved vs. the benefit. Good luck, keep posting, I am worried about you.
Dawn Kevies mom
AnonymousMarch 5, 2009 at 9:04 am
Not knowing what city or state you are in I can only reference what happens in Michigan. When Brandy came down with GBS the second time, her case was reported to our county’s health department. At first, we weren’t sure what they had reported to the health department as they also suspected HIB but when we returned the call we found out they had reported the GBS. They didn’t do anything to help Brandy but apparently they track each reported case.
Here’s hoping you get some answers soon and begin to improve. You are in our thoughts and prayers.
AnonymousMarch 5, 2009 at 10:23 am
Self diagnosis is dangerous. You have several symptoms that do not sound like GBS or CIDP. Please see a good neurologist or even a good internist. If you do not have insurance or are unable to pay, go to the emergency room of a large hospital. They must see you. I am assuming you are in the U.S.
Good Luck and God Bless!
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