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stvhck

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Hello-

I am desperately seeking any information on possible neurological vaccine reactions that may be linked to MND. I had a HepB vaccine (only one shot in series, did not complete) in Nov2010 and one week later, I began experiencing odd neurological symptoms. I have had several blood tests with nothing too far from normal...minus a borderline CPK test(s) and a high IgE. I have also had three EMG/NVC studies performed by thee different neurologists. The first EMG/NVC came back with borderline positive sharp waves (DEC 2010). Since then I have had two follow up EMG/NVC in March & April 2011 with everything "normal". In fact the two follow up tests did not find any positive waves which was indicated from the first test.

I am not sure where to turn because I have constant bi-lateral fasiculations in my calves and spontaneous muscle spasms through out my body...some of which will last for hours. The neurologists are stumped and so are the other doctors I have seen. Has anyone in the forum ever read or heard of the HepB vaccine causing MND symptoms?

I am a male, 30 years old with no history of MND in my family. I have no weakness or atrophy to date, just twitches, some joint discomfort, and odd sensation of "no feeling" in the tip of one of my fingers.

Any and all help/information would be greatly appreciated.

Thank you.
 

momofsixkids60

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Dear stychk,
Baclk in thhje late 60's was vacc. in scvchool for measles and sevreal weelks later was umnable to walk. Was latre diagmnosed with PC and now 40ish yrs larter have also Undioagfnosed UMND and we wil;l see.
Kimberluy
 

laurel

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You can see cases of Guillain-Barre following vaccination reactions. And I believe you can on occasion see positive sharp waves with GBS.
Laurel
 

TedH5

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First of all the fact that you do not have weakness is a very good thing and points away from MND. So does the fact that your last two EMG's were clean. Since they saw neither denervation or reinnervation, while I am not an expert, would seem to imply not only are your nerves not dying but with no reinnervation it would appear that they were not sick at one point and now repairing themselves. Your nerves are healthy in other words. Others may have better explanations but the clean EMG's is definitely positive. eneticpes of theories from g

As far as vaccines causing ALS, keep in mind they do not know what causes ALS. There are all types of theories from genetic to glial cells being involved, to lack of specific protein or having too much of a protein or enviromental factors, stress, I have even read tetanus shots. So I am sure someone would say Hep vaccine. However no one knows and there could be many different causes of ALS, meaning ALS could be several different things all with the same result.

My advice to you is let your Dr's do their job but do not stress about ALS since you have no weakness and the two most recent EMG's were clean. Twitching alone means nothing and can be absolutely benign!
Good luck to you!
 

stvhck

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Thank you all for taking the time to respond. I do have a follow up question...is there such a thing as a "chemical" induced MND? In a sense that is my fear...that this vaccine has created an auto-immune response that is attacking my nerves/neurons. While I only have twitches & spasms now, I am fearful that in time (if this goes untreated) it could lead to/cause atrophy & weakness. My EMG is clean now but there is always the "what if" factor that 5 years...10 years...or longer that this "thing" could lead to something like a MND.

There is too much information on the web regarding diseases/disorders and especially the topic of adverse vaccine reactions. Thank you for reading my post and answering.

God Bless!
 

notme

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Hi

Pain in joints and some numbness are not indicative of MND luckily. CPK might signal some muscle injury somewhere in the body--but you said it was only mildly off, which is good.

All kinds of things can cause muscle spasms. Are you doing heavy exercise or something that your body isn't used to? Why in the world did they do so many EMGs so close together? What type of neuro did them? Were they specialists in any specific disease? MS? MND? Neurosurgery?

At your age--likelihood of ALS is extremely low. It is possible you had some type of reaction to the Hep vaccine. Why didn't you finish the series? A physical reason or just chose to opt out?

Any neck injury or nerve issues from any nerve entrapment? That can cause numbness in fingers.

IGE test could signal some sort of allergic reaction. Was it done shortly after the vaccine? CPK--back when I worked in labs eons ago--was used to test for heart attacks--but a heart issue would have seriously elevated it.

I would think you're pretty clear for ALS--but there can certainly be something else going on.
 

stvhck

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Hi notme-

My CPK levels were checked about 3-4 times with the most recent coming back normal. The normal range was 30-200 (in that ballpark) and mine was right around 210, 238 at its peak. This was all done in the first 60 days post-vaccination. I did have a borderline positive ANA within the first 30 days post-vaccination, however I have sense been tested and the ANA is now normal.

I have read about "BFS" however it seems to me like that is only an "explanation" for people that cannot pin point something to their symptoms. Meaning that, I can't see how my symptoms are benign if in fact they are caused by a vaccine. At this point my neurologist is calling my diagnosis Post Vaccine Poly-neuropathy. I chose not to continue the series because my gut feeling is I happen to be the .00000001 of the population who had an adverse reaction.

I actually was the one pursuing the EMG/NVC studies because I could not get a clear diagnosis. I am also naive when it comes to this testing and assumed that different parts of the body needed to be tested to rule out MND. I didn't realize that a sample set was sufficient to eliminate MND from the picture.

My PCP suggested a pinched nerve because I was very much into heavy weight lifting for the past year. I have both a cervical and lumbar MRI. Cervical was normal and the lumbar showed mild spinal stenosis, L4 & L5 along with 1mm bulging disc. I also found out that I have subluxation of my ulnar nerve.

I apologize for the ramble and airing of my personal medical history. I honestly have no idea where to seek answers at this point.

Thank you all again.
 

notme

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Hi

They have no idea what causes MND. But--if EMGs were done in the limbs/areas that you were having symptoms--they would have shown something. The EMG will pick up things long before you even have symptoms--so, unless a doctor suggests you need it--you don't need to repeat the EMG/NCV.

Neuropathies can be caused by all kinds of things...but remember, ALS does not cause any sensory changes--no pain, no tingling, no numbness...the first thing you'd have noticed is an inability to do something. Many here noticed symptoms first as drop foot. Others with hand/arm onset found they couldn't do something such as opening a jar or buttoning a shirt.

Lots of people seem to have reactions to various vaccines. My daughter's first set of baby shots put her in the hospital and made her deathly ill. Needless to say--her first set was her last.

If your symptoms progress, I'd look for answers--but honestly, I think you can safely rule out MND at this point if two EMG/NCV are normal.

No one can say what will happen in ten-twenty years. Weakness is a sign of MND--for instance, I couldn't push the buttons on my car locks or push a can of air freshener...literally. My finger just collapsed. Now, I'm tripping on carpet and scrapping my toes for no good reason.

Are any of your reflexes abnormal? There are 40+ muscular conditions, I believe. Also several motor neuron disorders. But--if tests are normal--I'd think that's a good sign.

Muscle cramps and spasms can definitely be caused by heavy weight lifting, as can muscle injury--which is likely what elevated your CPK for a short time.

EMG/NCV would have shown nerve damage--but it's certainly possible you have some form of muscular issue going on. Did any of the docs suggest testing for MS?
 

stvhck

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I'm really sorry to hear about your symptoms. I don't understand why science can not find cures or treatments to stop the progression of MND.

One of the neurologist that I saw was an "MS specialist"...I did present the question of MS to him and the others however they feel I do not show any symptoms of MS. Aside from buzzing in my ears (which could be anything), I don't really have any sensory issues. The main persistent symptoms are the bi-lateral twitches in my calves (constant) and the muscle spasms that happen all over my body at any given time.

Because my symptoms are non specific it is difficult to find a doctor that is willing to dig a layer deeper and see what the issue is. I resorted to walking around the University of CA, Irvine asking faculty professors for any information they may have from their research...no luck there either.

Are there any additional tests you can recommend that I can suggest to my doctors aside from the EMG/NVC & MRI? I was thinking heavy metals or mineral deficiencies?
 

Bad Balance

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What does your doctor say?

Self diagnosis bases upon internet conversations is not the smartest course of action, eh?
 

davegud

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stvhck,

I had an adverse reaction to the smallpox vaccine in 2006 and wound up getting Medevac'd to Walter Reed for a brief inpatient stay. My immune system started to attack the lining of my heart (this was confirmed by elevated CKmb). I was a very healthy 32 year old man. I have discovered since then that the immune system is not very well understood, so I have stopped trying to find proof that my subsequent health problems are related to the vaccination. Since that vaccination, I have had pneumonia (rare in a healthy young male), multiple kidney infections (rare in a healthy young male), shingles (rare in a healthy young man), and now I have unexplained peripheral nerve hyper-excitability, which is a fancy name for cramps and twitches. Always in the back of my mind I will wish that I did not receive that vaccination, but it is pointless to try to find a connection to my current health problems. That doesn't mean that I am not worried about my current condition. Just look at my posts on this forum and you will see that I suffer from a bit of health anxiety.

Just try to stop making a connection if you can, since it really doesn't change how they will treat you going forward. There are plenty of anti-vaccination types that will get you all spun up for no good reason.

If your immune system has been modified and is now irritating your peripheral nerves, there is nothing that can be done to change it. Will this modification result in a more sinister problem down the road? Maybe... But you may also get run over by a car the next time you cross the street! The doctors will do tests and find a problem if one is there. Trust them and join me in my never-ending quest to stop worrying about the unknown!

Good luck my friend!
 

Alyoop

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You keep mentioning MND and vaccine. It's misleading as you have no MND symptoms and clear EMGs. Maybe try another site, like the bfs site and see what they think.
 

notme

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HI

Since my atrophy and weakness started progressing, I've read tons of information on ALS and other motor neuron disorders, as well as several muscular conditions.

Your clear EMG/NCV simply put, rules out ALS. Believe it. It's not there or they EMG/NCV would have picked up something.

Do I believe you're having problems? Yes. Bodies can react to various things. Your Ige test indicates something is going on--but no one here on an ALS forum is going to be able to lead you in the right direction.

See your GP and just insist on a full blood work-up. Luckily--lots of possibilities can be treated, unlike ALS. The Immune system can and does attack itself--the first test for auto-immune is usually an ANA--was it normal?

Heck--even thyroid issues can cause problems. There are tons of possibilities==but muscle twitches in and of themselves with no weakness and atrophy point away from the deadly ones.
 

stvhck

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thanks again for the follow up notme...I want to apologize for bringing my "symptoms" to the forum because I do realize and respect that folks on here are dealing with real issues. I mean no disrespect, and I hope no one is taking my search for answers in that regard.

To answer your questions...I have been to my PCP however, she refuses to believe the vaccine caused an adverse reaction. Despite my neurologist writing several letters to her and follow up phone calls. I have had full blood panels (including thyroid) however the only thing(s) that turned up were the IgE levels, CPK, and a high strep test. Which in itself was odd because I had no symptoms of strep throat.

I did have a borderline positive ANA test that I since repeated twice and both subsequent times it came back negative.

I live in Southern CA and assumed that medical care would be easy to find...I can assure you it is TOUGH to find a "good" doctor that you can trust and seems to have your best interest in mind.

I did find some neurological journals that suggested the HepB vaccine may contribute to MS or other MND. I have been trying to avoid reading "too much" n the web but when you can't get answers from your docs, where else do you go? I read something called peripheral nerve hyperexcitability disorder...looks similar to BFS.

Anyway, thanks for taking the time to read and respond.
 

trfogey

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I did find some neurological journals that suggested the HepB vaccine may contribute to MS or other MND. I have been trying to avoid reading "too much" n the web but when you can't get answers from your docs, where else do you go? I read something called peripheral nerve hyperexcitability disorder...looks similar to BFS.
MS is not a MND. It can affect motor neurons because it can affect any type of nerve in the body. The MNDs are specific to the motor neurons and don't affect other types of nerves. Don't presume that any information concerning possible causes or treatments for MS are in any way relevant to MNDs. The disease mechanisms are entirely different.
 
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