A quick update. Vaccine fund filed. Now the long wait starts.

My local neuro said he has seen thousands of vaccines reactions, most are minor but some are severe such as CIDP and the severe ones are definitely grossly underreported for various reasons. My Mayo neuro after hearing my vaccine story said and I quote “it is truly surprising how often that happens”. I am lucky at least my neuro’s are not the rabid denial types.

So folks, be vigilent. If you suspect your neuropathy is caused by vaccine, follow up with the vaccine fund. They know. Or there wouldn’t be that fund.

Hope all of you have good results. And don’t let those who refused to acknowledge it to give you doubt and stop you. The fund is there because however they don’t want to admit it they know. Get everything you deserve.

Best luck!

A quick update. Vaccine fund filed. Now the long wait starts.

My local neuro said he has seen thousands of vaccines reactions, most are minor but some are severe such as CIDP and the severe ones are definitely grossly underreported for various reasons. My Mayo neuro after hearing my vaccine story said and I quote “it is truly surprising how often that happens”. I am lucky at least my neuro’s are not the rabid denial types.

So folks, be vigilent. If you suspect your neuropathy is caused by vaccine, follow up with the vaccine fund. They know. Or there wouldn’t be that fund.

Hope all of you have good results.

A quick update, just had another EMG NCV, still within normal range. So frustrating! My balance is noticeably worse. Tremors, vibrations, muscle spasms and aches are all getting worse.

My neuro is very kind and promised to watch me through this ordeal until I get a diagnosis. He will see me every 6 weeks until something shows up in tests. If I have a quick decline I can call him any time. We discussed about a sensory motor antibodies panel and he will likely do that one.

He is very upfront and told me at first he also thought it was nothing serious, until I told him about the flu shot. He has seen too many vaccine injuries to ignore the connection. If it weren’t for the flu shot (thankfully I kept the record) he would still have thought it was all in my head. Well, small comfort.

I told him I would have given anything to go back in time and not to have the vaccine.

RandyB, thank you!

May I have a few more questions?
How much time after onset was your first spinal and second spinal respectively? So you waited 9 months till stairs were almost impossible for the second spinal? Did you also have EMG? When did it show abnormality?

Sorry so many questions!

I have developed night sweat (especially around neck and chest) this past week. It is terrifying watching the disease develop everyday.

bny806, thank you for the reply. May I ask how long the lag time might be for EMG? How you were diagnosed at the last? If your EMG and lumber were both normal, how did they decide it was CIDP?

My onset was 3.5 months ago and one month after vaccine. I have been getting progressively worse ever since. I have a lot of sensory motor symptoms and aotonomic. Numbness (getting worse by the day), prickling, burning, zapping, night sweat, mild diarrhea, mild dizziness, etc. Muscle twitches, aches, cramps, weakness. No stamina. Everything feels heavy and labored. Major balance issues. Tremors in hands. Locking fingers. Shaky feeling over all. Fatigue. Symptoms are very symmetrical and all my limbs affected. Sensory symptoms seem more distal than proximal. Motor seems about equal between distal and proximal.

GH, you are right. Right now I can’t do anything but wait and learn about more possible tests I can do. Maybe a complete neuropathy panel? I just worry again even if I hit the right test, it will be too early right now. It is terrifying.

jb, my symptoms started 1 month after the flu shot and are more or less symmetrical. They fit typical CIDP to a T.

If you think you have CIDP, get yourself to a neurologist as soon as you can. Ask for EMG, NCV and a spinal tab and hopefully one of them tells you something. The earlier you are diagnosed the better your long term outcome will be.

GH, thank you sharing your experience. My reflex was still there as of last Monday. However I am progressing little by little everyday so I am kind of a moving target these days.

My biggest worry is the delay of diagnosis and treatment. I just don’t know what to do anymore. I know there is a small percentage of CIDP patients who test normal in everything. Looks like I might be one of them.