Questions for those with diagnosis

Hi all still trying to get a diagnosis. Wondering about reflexes. Mine are hyper there +3 have been so since I first started having symptoms. I understand that CI DP you usually lose your reflexes. Has anyone found that they had a normal or hyper reflexes in the beginning but as time went on have they lost reflexes?

Really anxious to narrow this down to something, I haven’t been told that I have anything. Just told well we’ll see you back for an appointment I will send it to the specialist still have no answers really feel like this is going to be the way I live forever.

Also I developed some type of muscular movement disorder. When I move my arms certain way there smooth but when I bring them back close to my body a jerk jerk jerk jerk jerk and arrhythmic pattern the entire way back.

Does anyone experience anything like this if so can it go away or is this the way it’s can be forever?

I don’t think it’s been getting any stronger but it certainly has been changing back to normal either so I’m kind of wondering if it’s been damaged to a point where he cannot be repaired.

Whatever I have this was my first attack after the vaccine I’m afraid that if they don’t get a diagnosis and there’s a treatment that can help a next attack could be worse and cause me more damage. Still have symptoms every day but they’re not as bad as they were in the beginning.

I just want to mention also that I’ve been on antibiotics doxycycline and before that was on amoxicillin I was paranoid that it could be lime even though I didn’t remember being bitten by in the recent past but my western blot test show I had lyme bands even though I’ve never had been treated for Lyme but I did not have enough lyme bands to Be CDC positive.

My big test will come after I finish my anabiotic next week and go without them for a while and see how I feel I think I’ve been feeling better maybe because I’ve been on antibiotics but then again I just could be healing from whatever happened to me. I’ve heard some people say they have stiffness and swelling in the joints and this makes me think of lyme.

My antibodies are that of which would be a old Lyme infection there IgG antibodies and perhaps my vaccines set off the lyme in my body because it took my body more energy to create new antibodies for two other diseases that were being injected into me.

who knows can you see I’m grabbing at straws here!

Anyway just looking for input for those who have CIDP, thank you.

I also lost all my reflexes, muscle strength was gone because nerves couldn’t send signals, my skin was very sensitive to touch, my feet and hands were numb after the pins and needles got worse. Hope this helps. Have they done an MRI to rule out MS. MS patients sometimes have hyper reflexes. Hope you can get an answer soon. Its frustrating. Also, GBS is more common after vaccines. Keep us posted when and if you need us, we are here. Mary

Thanks for your replys. Yes I had a Brain and cervical spine MRI. without contrast. The brain was unremarkable and the cervical spine had tiny bone spurs and tiny bulge not impending any nerves. My EMG was normal. My blood work normal. Except I recently had a. 2 hour glucose tolerance test which was fasting normal at 85. 1 hour at 146 should be below 140 and 2 hours at 150 should be below 140. I’m to see an endocrinologist in sept. somehow I don’t feel that even if I have Pre diabeties that would (im only 112 lbs and 5’ 3 1/2 " was fairly active) account for my very strange symptoms. I have given a brief update in my page, if anyone hadnt seen my other previous posts.

I am looking into a LLMD well but I really didn’t feel it was Lyme. But I do have antibodies to Lyme and never had it and never treated for it. I just don’t show enough to be CDC positive. of course I have to look at every possibility. My neurologist did not think it was MS, GBS or CIDP, or ALS. he didn’t say what he thought it was. Ive had people with MS tell me MS doesn’t move around like mine does. I’m wondering about Parkinson’s as well but didn’t specifically ask about that one yet. I’m going to Boston next month to see a Diffrent neuro who specializes in hard to diagnose neurological deseases. Hopfully he’s good.

With the cost if health care I think we should have an opportunity to interview a potential health care provider before we go see them!

Im Still interested in hearing from others. I still have reflexes but my symptoms seem like CIDP except my reflexes so I wonder if they just might not have been affected yet?

I feel like there’s too many possibilities that this will always be a mystery. :frowning:

I have no reflexes and have CIDP. I also have rheumatoid arthritis. No nothing about lyme disease.

I got diagnosed with CIDP that started up 10 days after I had the H1N1 vaccine in 2010. There was no other explaination but the flu vaccine that would have caused my CIDP. I was perfectly healthy, had the flu vaccine, then foot started to go numb 10 days after the vaccine. Worked up my leg, then started in the other foot, then in both hands. I was diagnosed quickly and did not substain any permanent damage to my nerves because started IVIG within 5 months of onset. I continue to get IVIG every 21 days and it seems to keep my symptoms at bay for now. But if this came on right after a vaccine it indeed could be the cause. I know for sure mine was!

I am pretty sure mine was caused by H1N1too.

I had hyper reflexes when I was first diagnosed too. The doctor told me that it didn’t fit the normal pattern which is why I was referred to a specialist at an academic center. My nerve test showed that I had more axonal damage than myelin damage, but it’s probably because it went so long before I was tested. My symptoms first started when I was pregnant, they told me it was fluid retention and it would go away. It started in my left foot and I remember feeling like I was stepping on a block of wood. The numbness pain, tingling and pinprick sensation started after that. Then it spread to my hands and they told me it was carpal tunnel, then it went to my rightfoot and did the same thing. after the baby was born, it got much worse, and that’s when the weakness started. I had problems with turning and gripping, I couldn’t clip my fingernails, hold a pen or turn a car key. I had trouble standing in the shower and had to use a shower chair. The weakness has gotten better in time though I still have minor flares now and then. I know it’s frustrating not knowing what’s going on, keep talking to the doctors and hopefully you’ll get an answer soon enough.

Thank you all for your responses, I can’t believe how crazy this stuff is. Everyone truly experiences gthings differently.

Clb75 Thank you for your response, im glad things have gotten somewhat better for you. Your the first person ive seen who said they had hyper reflexes. I’m wondering if you are felling better due to treatments? Or did it just start to go into some kind of partial remission?

I’m do anxious to know - want treatment to prevent further damage.

Going to see a new neuro in the morning so hopefully I’ll get some answers but I doubt it.

I think IVig has made a great difference with me and it stopped the numbness in my feet from progressing. They went pretty quick from the soles and toes to all over after I delivered. It took two cycles for it to work but it eventually halted it and I got my strength back about 90% from where it was.

Hi everyone, I had my appointment yesterday. I saw a neuro who specializes in GBS type disease. While he said it sounds a lot like GBS He doesnt think I have that or CIDP. he said that because I’m feeing better he thinks it will get better and Still says it could be MS as well. He definatly thinks the vaccines were the cause, I also realized the vaccine was not just tetnus but was the TDAP I thought I was just getting tetnus. I went to get my vaccine lot my numbers to report the reaction.

Has anyone experienced an MRI with contrast, can it show you any nerve demylentation?

My left foot has a numb feeling when I touch a certain spot on it and it. Seems to be getting numbe now without touching it. Strange how that foot feels like it has more damage even though it started in my arms.

I also have ringing in my ears now a lot. It’s not very loud but it’s annoying. Anyone else have this? Doctor didn’t know if it was related.

Also I’m on doxycycline and was on ammoxycillin before. Not sure if that’s why I’m geeing somewhat better.

My nerve biopsy came back with "good arguable cause" that I have CIDP in Aug. 2010. Kaiser started an in-house neuro dept. and made me start seeing them. I am just now seeing the Dr. that diagnosed me. I had IViG from Oct. 2010 until June 2012. The diagnosing neuro's plan was to treat w/IViG for ~3 months; re-evaluate and see if I were improving. CIDP is very difficult. I don't know about the MRI, but if that easy i would believe we would all have had one. So my answer would be no. Nerve conduction studies and the biopsy are the best and even now they are not recommending the biopsy I don't think. The similarities between Cherie' Marie Toothcot (sp) Syndrome, Guillian Barre Syndrome, MS are so close, it is difficult.

I do know since I stopped the treatments, I am getting weaker. I took an awful fall in my driveway this past Friday. My old/new neuro is doing the full gamut of nerve conductions studies on 9/6.

I wish you the best.