Post Vaccine Peropheral Neuropathy

[cathy54321]

Hi Dr. S and the broader neurology community,

I have been very sick with past vaccine peripheral neuropathy for over 6 months (although it has gradually improved - very slowly) Doctors believe that my immune system attcked the peripheral nerves in my body after I got the H1N1 vacc - GBS/MS and all other autoimmune diseases have been ruled out.

My problem is ongoing buzzing legs, numb feet and vibrations that seem to take over my body and are unrelenting. I feel sick alot due to these nervy vibrations - it is very hard to live with and after 6 months I am getting concerned that I will not get any better -

Can these peripheral nerves that have been irritated so badly recover - will these symptoms ever go away?

Have you heard of post vaccine reactions? Have you ever had any patients with the same medical issues? Did they recover?

It seems so unfair to me that I did the right thing by getting vaccinated, only to be left seriously debilitated.

Thanks for any help or answers you can provide to me

[dsemrad]

Hello All,

Just found your forum.  I wanted to share my experience with the rabies vaccine.  Shortly after receiving it in the Spring of 2009, I began experiencing what I thought were MS-type symptoms.  In fact, I was certain I had MS.  After 2 neuro exams and an MRI, MS was definitely ruled out.  

I have had (and at times still do) the exact same symptoms you describe.  My neuro fully believes it is a transient situation wherein my body goes into autoimmune response from time to time.  In my case, the situation will fully resolve before returning.  I am in a somewhat severe relapse at the moment and saw the neuro again yesterday.  He did a full work-up and again assured me that this was nothing more ominous (ALS, MS, etc.).  

While I still have to deal with the day to day problems this situation causes, I was thrilled to hear it described by him as a "benign" peripheral neuropathy that is just that, benign.  I think the mental part, at least for me, is the worst and I am now hoping to fully put that part (the mental) behind me.  I don't want to sound preachy, but I firmly believe that help in the form of an anti-anxiety medication can truly be beneficial.  

In my case, I was on a really small dose of Celexa the first time this happened and it helped.  I then felt I did not need it again until it came back (about 3 times now).  I am now back on the small dose and it's too early to tell if it will make it a lot better, but I am thinking so.  The mind/body connection is powerful, at least in my case.  5 years ago I would have said it was all hogwash!!

Good luck to you.  It was very thereapeutic for me to see a case almost exactly like mine and to realize I am not losing my mind.  By the way, my wife is an MD and I sometimes truly think she thinks a lot of this is amplified within my own mind.  I can assure you that these sensations and odd feelings of you body buzzing, etc. are real.

Dave

[cathy54321]

Hi There MoS - I think I may have seen you on the Vaccines and Immunizations forum - I have been posting there for the last 7 months...thanks for your response I really appreciate it. The day I wrote in was a very desperate day for me - just started a new job the intensity drummed things up etc - the buzzy, vibrations have receded and mostly my symptoms just wax and wane...

Really looking forward to the day this ordeal will be over. The relapses or flares are no fun, hang in there.

I do believe we will heal and I believe the tingling is due to nerve regeneration - it is a very good sign apparently.

You will get your life back - it just takes time.

Let's stay in touch - I post regularly on the 'Tingling after swine flu vaccine chapter 2 forum'

Take good care of yourself and look forward to when you will laugh and play again very soon.

Cathy

[MyriadofSymptoms]

I have also been dealing with debilitating effects after receiving the h1n1 vaccine in January of this year 2010. One of the lingering effects is the entire body vibrations. They started months ago as being only internal thoughout my entire body and into my brain (the brain vibrations were the WORST!) Now, the vibrations seem to be external as well as internal. My husband can feel me vibrating in the bed most nights.

I've been to emergency rooms 3 times, no one could ever find anything wrong with me other than on my first visit (3 days after receiving the vaccine) My legs and arms became numb and tingling then went on to cramp up to the point where I couldn't hold things in my hand because they were so still. After CT scans and MRIs, all they knew was that I had Stage 2 hypertension (167/117) My bp stayed at Stage 2 for about 2 months. I was refered to a cardiologist, had echocardiogram and carotid artery tests which were fine. I had to be put on 2 bp meds. Thankfully, that finally went away and I'm glad to say that I'm not off of all bp meds! And my bp is finally under control.

I've seen my primary dr. so many times now I'm sure that I'm now getting on her nerves. I'm also now on my 3rd neurologist - this one a very well reknowned dr. in his field and he does in fact believe that it is some sort of transient (hopefully transient) auto-immune response to the vaccine. Although he is very knowledgable within his field, he, as most medical professionals just don't seem to know what to do about these awful effects other than treat the symptoms. I've been put on Gabapentin then switched to Lyrica to help with the nerve pain and numbness/neuropathy. The shooting electrical pains have calm considerably and the numbness only comes randomly, maybe 4 nights a week in my arms and hands while sleeping.

I am in my early 30s so my neuro is hopeful that with my 'young-ish' age that my nerves will more than likely repair themselves but I'm fearful from all that I've read over the internet that it's quite possible that this vaccine has ruined my entire life. I may never be the same person again.

I miss my life so intensely. I have a daughter and I miss playing with her, being happy and willing to go to the pool any moment, take her to the movies or take a walk around the neighborhood.

I feel the exact same way as you... it so extremely unfair that we tried to do the right thing by getting vaccinated but were left in worse shape than most of the people that were stricken with the actual virus, took antibiotics and lived through it just fine. I know, there were many horrible deaths cause by the Swine flu but from all that I've read (6 months worth of intense research) I've found that many more people are suffering adverse effects from the vaccine than those that suffered through the flu itself.

In conclusion, I can say to you that I have been lucky and some of the worst parts of my adverse effects have dissipated, however, I'm far from symptom free and I'm not sure if I'll ever be. I have however heard many success stories in which individuals only suffered a few months then were back to normal. I've also heard that it can take up to a few years to get back to normal. I guess it's just a waiting period for us.

Best of luck to you!