I just joined this group and I’m still trying to learn What’s going on with me. I had a hep b vaccine about three weeks ago. 5 days later I end up with numbness in my arms hands fingers and shoulders progressively getting worse each day. I had noticed when I stayed home
Home a few days I was feeling better. I feel better in the mornings. Today was different. My arms hardly bothered me at all today, but my left shoulder blade up into my neck was sore all day. I had a slight frontal headache for about half the day and some other strange feeling in my throat into my chest that I get on and off latley since the vaccine which I’m wondering if it’s acid reflux as I was diagnosed with GERD about 10 years ago it was so mild I didn’t know I had it and never took anything. Anyway tonight I went to look up this site on my phone and I bent my thumb to hit a button and imy thumb shakes or tremors uncontrollably. I tried it again and again and it won’t stop. . This has never happens to me before and it’s very frightening. Is this something any of you have experienced? Also did your symptoms come and go from day to day or morning to nights? I’m not really sure what is wrong with me and I’m hoping to learn from those of you who have had this a little longer and know what symptoms led you to believe you had cidp. My appt with neurologist is next week. I really cant wait.
I agree with Thumper with one exception. It could be GBS so if you suddenly get worse such as totally can’t move legs or arms or have trouble breathing go to ER. GBS can come on very rapidly and become severe quickly. GBS has been linked to vaccines so that is why I mentioned it. CIDP comes on slower with symptoms not quite as intense.
I have heard before that vaccines (especially in relation to the flu vaccine can affect or cause CIDP and /or GBS) I suppose it is a natural connection because of the relationship to the immmune system. It is worth investigating I would think.
The shaking thumb is a typical symptom of mine. It only happens in my right hand and can vary considerably is strength. I am not sure if it is time of day or what makes it change or go away. I have just recently had my eight weekly IVIG treatment so the shake is virtually non-existant at the moment but will probably get worse over the next few weeks.
All the very best
Hello and Welcome to this great group of informative people that is here and also very supportive.
I haven't been diagonose with the CIDP....I have been last year diagonose with sever sensory polyneuropathy.
I have in and out pain and stiffness, numbness and strange things going on with different parts of my body.
Lately I am again falling down more. I have broke my hand, thumb, foot with all my falls.
I can't feel my toes, and or either move my left foot up like to life to a step. I also have drop foot.
I have lots of problems with my GI as well. I guess my lungs are effected because my Lung doctor thinks my copd is caused by my polyneuropathy...
I have only had EMG's that were weird in that I can't feel the shocks with the needles....I can feel a bit more and sometimes normal with just the tape on wires...but it seems my personal (mis spell) nerve is effected and isn't sending messages to my brain...
I have so many MRI's over the pass year I think I should glow.... My Neruo doctor that discover my problem told me about a year ago that he couldn't help me further.
I try to go to another set of neuro doctors and it was a failure.....they couldn't even fig out why I have drop foot.
And it seems that even the Ortho doctors can just see me walking and now are telling me my right foot is also droping. That is a hard to take but I think dogman is right you got to keep going until you find the right doctor...never give up...although I feel like it more times then you'll know....
so I did look here as suggested....and found doctors that were part of the special seven....that have experience...my last hope I feel for me living in AZ. Anyway....I have apt this Tue with one of them....I only can hope they will do more testing and not send me on my way with scraching their heads as to what is wrong with me....I only hope that
they have seen enough people with different type of illnesses that they will have a been handle on what is going on with my body.
Today I don't feel on the sides of both legs, arms, and face....I have stiffness of both legs on n off daily...and this is really recently my left arm is doing what my left leg has been.... stiffness
I can't move my left thumb without so much pain to do it...and my little fingers....espeically my left hand together.
I have shakes on my hands and now since the left one is worse it can't do the shakes like my right hand does...they don't know why I am doing this...the other day my PCP thinks maybe it's the poly too...thinking my nerves might be causing my hand to do these weird shakes and other things....I can't control.
I feel earlier this week getting out of the shower and I am getting a bar to grab so I won't fall hopely again.
But I was having xrays yesterday...I couldn't move my left leg at all....they had to move my feet for me...
The girl doing the xrays used tape so she could put my feet and legs in the position it needed.
I couldnt' feel on the left side at all.....which is getting worse...
MY PCP sees me worse....while I was talking he took a tong despresser and broke it and started sticking me...
I didn't realize he was doing this...until he got to my right arm...was the first feeling I had....yet I walk...it's hard to believe I can still walk...maybe not well but I do.
I have a old scooter and I need a better one that I can use....right now I am on oxygen 7/24 and I have someone the insurance thru the stae is sending in to dress me and wash me...and do some house work...
I am getting food also sent to me....other that that..no one is willing to test me further...it is so hard to get in to any type of doctor...the lady from the state is trying to open doors for me.
that is where I am right now...............my word to you is DON'T GIVE UP...YES IT'S SCARY NOT KNOWING
but never give up....stay with us here....
ruthie
From my experience you seem like you could have GBS or CIDP, they should do blood tests and a lumber Puncture to find out. GBS seems to come on within a few weeks, CIDP takes longer (generally). It could also be MS, but at least you are being seen fairly quickly and hopefully diagnosed properly. I have information that states vaccinations can cause these diseases, but so can other things. If you want to read my whole story please go to: http://mycidp.blogspot.com - I hope it may help you.
Drew
Hi,
Pretty sure my CIDP came from Hep b vaccine. Three weeks after the second dosage on March 17, 2009
the tingling and numbness and back pain started. I work at a hospital and was luckily sent to a neurologist because the emergency room doctor suspected GBS. Within a month I was diagnosed with CI DP and on IVIG's. Seems like getting the treatment started as soon as possible is key with this. I changed neurologists after the third appointment when I located another one the was very familar with CIDP. Keep moving forward and good luck. Read all the great stories on here and you'll find people with some of the same issues you are having.
Teena
Thank you Heater your right I shouldn’t worry so much I’m sure that doesn’t help me much. Having so many friendly knowledgeable people here really makes a difference.
Heather said:
It sounds like CIDP, not ALS or GERD. Your neurologist may order a brain MRI to r/o MS. Don’t over stress yourself with worry. If CIDP or MS, there are treatments! Please keep us posted!
Thumper thank you, thats great advice, I know if I don't bring a lst I'll forget a lot of them. Thank you for your experiences as well, it seems like more info makes it easier to deal with. Thumper said:
Jewels,
I know you are anxious and scared... been there. I think we are all so different that the only advise I can give you is to not put stress on yourself with worry. Make a list of all your symptoms and bring it with you to your appointment next week.....even if it seems insignificant to you. I started out with "probable" MS and with the increase of symptoms and the right Neuromuscular specialist I've finally been diagnosed with CIDP. My symptoms vary from day to day and hour by hour. I have numbness, tingling, pain,itching,heat sensations and vibration sensations in my feet and hands. Some evenings I can hardly walk the pain is so intense. I have occasional tremors in my hands and balance problems. I also have issues with blurry vision and exteme dry eye. These symptoms vary in their intensity and occurrance. I never know how I'm going to feel from one day to the next. I hope this helps ! Good luck and keep us posted ! I should also tell you that you will need specific tests to diagnose CIDP. You need increased protein in your spinal fluid and an EMG (nerve conduction study).
Mashrub thank you for that piece of advice, I didn’t realize that could happen! The breathing part I mean. I will go if I have trouble like you mention. I’m wondering if anyone reading this has had trouble breathing?
Mashrub said:
I agree with Thumper with one exception. It could be GBS so if you suddenly get worse such as totally can’t move legs or arms or have trouble breathing go to ER. GBS can come on very rapidly and become severe quickly. GBS has been linked to vaccines so that is why I mentioned it. CIDP comes on slower with symptoms not quite as intense.
Glen thanks for sharing that with me, it’s very scary to see your body lose control. I got two vaccines but one was tetanus which I’ve had when I was a kid twice and again about 10-15 years ago so I didn’t mention that,since it never caused me any trouble before. The Hep B is the one that was new to me. I’ve also had a flu vaccine years ago no troubles there and I had to update other vaccines in 2000 to get into college. I haven’t been sick with anything either so all I can do is relate it to the vaccine that ive never had before. Good luck with you treatments.
Glen Merryweather said:
I have heard before that vaccines (especially in relation to the flu vaccine can affect or cause CIDP and /or GBS) I suppose it is a natural connection because of the relationship to the immmune system. It is worth investigating I would think.
The shaking thumb is a typical symptom of mine. It only happens in my right hand and can vary considerably is strength. I am not sure if it is time of day or what makes it change or go away. I have just recently had my eight weekly IVIG treatment so the shake is virtually non-existant at the moment but will probably get worse over the next few weeks.
All the very best
Hi ruthie4bearz, I’m so sorry to hear about all your troubles, it sounds like its been so difficult for you. I will keep you in my prayers for some ansewrs and some relief, hang in there. I have my first appointment on tuesday, I’ll be thinking of you then. I have no idea if this doctor I was referred to or anyone in his group has any experience with this kind of thing but I’m close to boston so I will be looking for a specialist there if I don’t think he takes me serious or has no clue that’s for. I just want to get my initial appointment and see what comes of it. I want to thank you so much for all the info. By the I was wondering how long this has been going on for you? Also is there a way that you know of that I can read everyone introduction? Im sure it would be easier that I dont have to keep asking people how their symptoms started I’m very interested in knowing everyone’s experiences. Thank you again and good luck.
ruthie4bearz said:
Hello and Welcome to this great group of informative people that is here and also very supportive.
I haven’t been diagonose with the CIDP…I have been last year diagonose with sever sensory polyneuropathy.
I have in and out pain and stiffness, numbness and strange things going on with different parts of my body.
Lately I am again falling down more. I have broke my hand, thumb, foot with all my falls.
I can’t feel my toes, and or either move my left foot up like to life to a step. I also have drop foot.
I have lots of problems with my GI as well. I guess my lungs are effected because my Lung doctor thinks my copd is caused by my polyneuropathy…
I have only had EMG’s that were weird in that I can’t feel the shocks with the needles…I can feel a bit more and sometimes normal with just the tape on wires…but it seems my personal (mis spell) nerve is effected and isn’t sending messages to my brain…
I have so many MRI’s over the pass year I think I should glow… My Neruo doctor that discover my problem told me about a year ago that he couldn’t help me further.
I try to go to another set of neuro doctors and it was a failure…they couldn’t even fig out why I have drop foot.
And it seems that even the Ortho doctors can just see me walking and now are telling me my right foot is also droping. That is a hard to take but I think dogman is right you got to keep going until you find the right doctor…never give up…although I feel like it more times then you’ll know…
so I did look here as suggested…and found doctors that were part of the special seven…that have experience…my last hope I feel for me living in AZ. Anyway…I have apt this Tue with one of them…I only can hope they will do more testing and not send me on my way with scraching their heads as to what is wrong with me…I only hope that
they have seen enough people with different type of illnesses that they will have a been handle on what is going on with my body.
Today I don’t feel on the sides of both legs, arms, and face…I have stiffness of both legs on n off daily…and this is really recently my left arm is doing what my left leg has been… stiffness
I can’t move my left thumb without so much pain to do it…and my little fingers…espeically my left hand together.
I have shakes on my hands and now since the left one is worse it can’t do the shakes like my right hand does…they don’t know why I am doing this…the other day my PCP thinks maybe it’s the poly too…thinking my nerves might be causing my hand to do these weird shakes and other things…I can’t control.
I feel earlier this week getting out of the shower and I am getting a bar to grab so I won’t fall hopely again.
But I was having xrays yesterday…I couldn’t move my left leg at all…they had to move my feet for me…
The girl doing the xrays used tape so she could put my feet and legs in the position it needed.
I couldnt’ feel on the left side at all…which is getting worse…
MY PCP sees me worse…while I was talking he took a tong despresser and broke it and started sticking me…
I didn’t realize he was doing this…until he got to my right arm…was the first feeling I had…yet I walk…it’s hard to believe I can still walk…maybe not well but I do.
I have a old scooter and I need a better one that I can use…right now I am on oxygen 7/24 and I have someone the insurance thru the stae is sending in to dress me and wash me…and do some house work…
I am getting food also sent to me…other that that…no one is willing to test me further…it is so hard to get in to any type of doctor…the lady from the state is trying to open doors for me.
that is where I am right now…my word to you is DON’T GIVE UP…YES IT’S SCARY NOT KNOWING
but never give up…stay with us here…
ruthie
A
Andrew Markham said:
From my experience you seem like you could have GBS or CIDP, they should do blood tests and a lumber Puncture to find out. GBS seems to come on within a few weeks, CIDP takes longer (generally). It could also be MS, but at least you are being seen fairly quickly and hopefully diagnosed properly. I have information that states vaccinations can cause these diseases, but so can other things. If you want to read my whole story please go to: http://mycidp.blogspot.com - I hope it may help you.
Drew
Teena thank you for your input. I am a nursing student and as a requirement to start school I had to be vaccinated and have a titer after words now I think my dream of being a nurse will not materialize, I don’t know what to do about that. I don’t know if they will allow me to go without the vaccine, also I don’t know how at risk I will be for Hep B if I work at a hospital. I don’t want to take my 2nd dose because I’m afraid it will complicate things further. Whats your take on this? Are you still working and did you have to sign a waiver or do you have immunity now? Do you think the risk is high of getting Hep B. I think when I have time I’ll be researching that as well I’m curious about my odds. I really wanted to be a nurse now I’m so discouraged. If I have any disability from this disease (or whatever I have) they probably dont want me. I don’t know if I mentioned to anyone, I’m 41 and have been going to school doing my pre requsites and co requsites for the last 4 years. Thank goodness I haven’t quit my current job. Any suggestions from you I would appreciate. Thank you.
2bt2 said:
Hi,
Pretty sure my CIDP came from Hep b vaccine. Three weeks after the second dosage on March 17, 2009
the tingling and numbness and back pain started. I work at a hospital and was luckily sent to a neurologist because the emergency room doctor suspected GBS. Within a month I was diagnosed with CI DP and on IVIG’s. Seems like getting the treatment started as soon as possible is key with this. I changed neurologists after the third appointment when I located another one the was very familar with CIDP. Keep moving forward and good luck. Read all the great stories on here and you’ll find people with some of the same issues you are having.
Teena
I got CIDP from the H1N1 flu vaccine in 2010. The key is get diagnosed as soon as possible to keep your CIDP as mild as possible. I got the vaccine Nov. 10, 2010 and started with numbness in my right foot 10 days after the vaccine. I did not put them together until after I saw a neurologist in April 2011 when she diagnosed me with CIDP. So I started IVIG in April 2011 about 5 months after the first symptoms started. Now I get IVIG every 21 to 28 days (just pushed out to 28 days last month and did good). I have my CIDP mostly under control. Very mild symptoms that are mostly annoying but don't affect my day to day living. But I have to keep up with the IVIG or my symptoms return and get worse. So it is a bummer that I have this disease but since I was diagnosed so early I am not affected as much as someone who when years before diagnosis and treatment. The down side is my insurance keeps going up because of the cost of them covering my IVIG infusions! I worry they will drop me because my disease is so expensive to treat. Keep up with your neurologist and if you don't feel they are diagnosing you right then find another one that will. Good luck and don't stress too much (hard, I know). Stress does make your symptoms worse I know.
Thanks for the information, I really appreciate you taking time to provide me with information.