So this is now interfering with important parts of my life

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So this is now interfering with important parts of my life

Postby bama on October 20th, 2014, 1:01 pm

So... I was supposed to be in Addis Ababa, Ethiopia right now... but nope, sitting here in Alabama instead. Why you ask... let me tell you and with that comes the question. So never having traveled to that part of the world, I needed some immunizations, namely yellow fever and an MMR booster. Turns out my doc wouldn't give them to me since I still have this yet 'un-diagnosed' neurological condition. Until the neurologist gives me a completely clean bill of health, I can't get anything that contains a live virus such as those two shots. His hesitation is that my 'condition' could be auto-immune related.

So.... anyone here been diagnosed with anything such as a compromised immune system that could be attacking nerve fiber causing the full body twitching and soreness? Is it even a remote possibility that it could be something like that? Since a compromised immune system wouldn't be a good place to put a live virus, I can't get the shots until it's proven that there is no dysfunction in my immune system.

Thoughts??
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Re: So this is now interfering with important parts of my li

Postby mwagner on October 20th, 2014, 1:21 pm

It's somewhat known that some auto-immune conditions can have twitching as a symptom - especially RA, Lupus, etc. However, you should probably look into that with a rheumatologist, who would see if you have a positive ANA and do other antibody tests. Then, the rheumatologist might make a recommendation of whether or not you can get those vaccines.

The part that makes me a little nervous regarding this post, is that I'm getting my flu shot tomorrow after 3 years of not getting one, because I've been worried about the reaction I may have twitching-wise (I'm scared it will make my symptoms worse). Was your neurologist only worried about live-virus vaccines? I would get the inactivated flu shot vaccine with no thimerosal (mercury additive).

(Sorry - didn't mean to turn this around and make it about me - just curious, really).
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Re: So this is now interfering with important parts of my li

Postby mwagner on October 20th, 2014, 1:46 pm

This is an interesting article.

http://www.the-rheumatologist.org/detai ... sease.html

I think the main concern they have with live virus vaccines and auto-immune disease is more related to the immunosuppresent drugs they give patients with autoimmune conditions. Steroids reduce your immunity, and therefore could make you sick and contagious if you have a live virus vaccine.

So - I would get a quick visit in with a rheumatologist to rule out any autoimmune conditions, if you can. Because very likely you don't have one, and can get the vaccines you missed out on, and go to Ethiopia.

Mitra

PS: There are lots of theories out there that we have some sort of autoimmune condition, but nothing has been confirmed.
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Re: So this is now interfering with important parts of my li

Postby German2 on October 20th, 2014, 3:20 pm

Maybe your neuro is thinking of an autoimmune polyneuropathie? This also makes twitches...But can be ruled out by certain exams..In that case you have often gangliosid antibodies. And they can be checked with blood test (done by neuro in that case. Rheuma docs don't care about gangliosid antibodies).

I have those gangliosid antibodies. In my case they seem to have some effect on my nervous system but it does not fit in any desease pattern (up to now), because I don't have any polineuropathie yet..

to mention an example: The auto vaccine against pig flu has Guillian-Barré-Syndrom (acute polineuropathy) as a very rare side effect. Maybe your neuro is afraid to boost something in your body. But that can easily be checked and ruled out. Maybe you can ask him directly...

(My neuro is of the opinion that my pig flu shot could be the reason for my gangliosid antibodies. And I have an autoimmune desase anyway - hashimoto. And if you have one, it is more likely to get a second)

I hope my post did'nt confuse you. I tried to explain about how it can influence each other...
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Re: So this is now interfering with important parts of my li

Postby MarioMangler on October 20th, 2014, 4:02 pm

Regarding flu shots, I get one every year and I've never had a problem with it.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: So this is now interfering with important parts of my li

Postby German2 on October 21st, 2014, 10:34 am

...pig flu immunization was a special thing. And as I said, very rare side effect. Not everyone getting this. My family also did not had anything. I just wanted to give an example of how shots can interfere sometime. But that does not mean of course, that I would not do immunizations any longer.
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Re: So this is now interfering with important parts of my li

Postby misterjuanperalta on October 21st, 2014, 1:15 pm

I have polyneuropathy, not sure if autoimmune.
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Re: So this is now interfering with important parts of my li

Postby Jayden on October 21st, 2014, 8:09 pm

12 years ago i got Guillain Barre syndrome (severe) ,then im into 2 and half years of twitching and neuro storm,was diagnosed with RA by my Rheumathologist a few months ago.
Its been tricky ,because i have normal blood test,0 positive i thinks its called, he went with his gut feeling and re tested some weird proteins ,antibodies and voila!
You got Rheumatoid Arthritis.
Im taking Plaquenil for RA.
I cant get nowhere near vaccines,NONE. 0
Btw
I also twitch on left side mainly and constantly,right side comes and goes.
Im taking 2 or 3 weeks off from Gym ,because the twitching and tremors get crazy after and during weight training.
Even steady state cardio will give me the twitch and tremors.
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Re: So this is now interfering with important parts of my li

Postby mwagner on October 22nd, 2014, 9:35 am

Jayden,

Did you get GBS from a flu shot? Or did you just get it?

For everyone else - there was a correlation between GBS and the Swine Flu vaccine in the 1970s, with several cases arising. But, nowadays the incidence of GBS from a flu shot (or any vaccine really) is so small that they aren't even sure it's a real correlation or just coincidental. There is also an incidence between GBS and catching any virus.

I just wanted to clear that up.

Mitra
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Re: So this is now interfering with important parts of my li

Postby Jayden on October 22nd, 2014, 12:27 pm

mwagner wrote:Jayden,

Did you get GBS from a flu shot? Or did you just get it?

For everyone else - there was a correlation between GBS and the Swine Flu vaccine in the 1970s, with several cases arising. But, nowadays the incidence of GBS from a flu shot (or any vaccine really) is so small that they aren't even sure it's a real correlation or just coincidental. There is also an incidence between GBS and catching any virus.

I just wanted to clear that up.

Mitra

I got it after being sick with belly ache and diarea.
guess a virus?
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Re: So this is now interfering with important parts of my li

Postby mwagner on October 22nd, 2014, 1:21 pm

Wow. I'm so sorry Jayden. As I said, I think you can get GBS after exposure to any virus, but it's so exceedingly rare, that I haven't actually met someone who has had it. I'm assuming, though, that you have recovered from it?

I'm also very sorry to hear you have to deal with RA. As you may/may not know there are correlations between twitching and anything autoimmune, so at least you have a good explanation for your twitching.

Mitra
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Re: So this is now interfering with important parts of my li

Postby SecretAgentMan on October 23rd, 2014, 7:41 pm

GBS and RA are both autoimmune. My BFS was autoimmune related. Most of my physical healing regarding my BFS was gut related. The immune system is around 80% in your gut. Restoring proper gut health aids a lot of people in their health problems, especially autoimmune. I'm not saying its a magic bullet, but you may want to seriously looking into diet modification and supplements to reduce yeast/fungus (candida) and take a probiotic. Yogurt doesn't cut it either. Fermented foods are good for gut health too. Sauerkraut and Combucha are good for example.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: So this is now interfering with important parts of my li

Postby Jayden on October 23rd, 2014, 11:17 pm

Need to take note, i heard about the gluten diet... But then i dont eat much bread or pasta.
My GBS left me paralized only could move left arm and some head movement, cant even blink...almost died from it.
Spent almost a year in bed and therapy.
Had to learn to walk all over,starting from crawling ,like a baby.
Yep we can say i been trough some hard times. :roll:
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Re: So this is now interfering with important parts of my li

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