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Old 04-30-2015, 03:48 PM #21
Albertakewl Albertakewl is offline
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What about the others?
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Old 04-30-2015, 10:23 PM #22
SoftTalker SoftTalker is offline
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Quote:
Originally Posted by tarheel15 View Post
Hi everyone.. it's been a while since I've been on the forum. I did several rounds of IVIG over the past year with mixed results. I have lots of burning still - all over the body which waxes and wanes. Has anyone found relief with supplements? I find that I can't tolerate most supplements or meds due to GI side effects or insomnia. I am already dealing with lots of fatigue and sleep issues. Other new symptoms are severe heat intolerance - anything that gets my heartrate up with cause a burning prickly sensation all over my body. I have to stay in cool environments. I can't do hardly any physical activity. I also have lots of food sensitivities and IBS symptoms. I have been doing gluten and dairy free for almost 1 year now.

I also get frustrated b/c this all started after a flu vaccine in Oct 2012. I wish I never took it. Life has never been the same since - I am 34.
Thanks for listening.

I will follow this thread....
I had severe reaction to flu shot in October 2013.
Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this.

Have never been the same.

Docs refused to allow flu shot this year.

Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms.

But I guess I just got used to having "STUFF" happening and

WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most.....

Sighh.......sorry to read about yours

Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where -
but they have recently escalated to where I really notice them and have much pain.

The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN.
O myyy = overwhelming at times.

The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!!
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Old 05-01-2015, 06:44 AM #23
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Default So Sorry

[QUOTE=SoftTalker;1139478]I will follow this thread....
I had severe reaction to flu shot in October 2013.
Ended up in ER - I have myasthenia gravis and it was exacerbated almost to point of a crisis. In fact I posted in NeuroTalk under myasthenia gravis about this.

Have never been the same.

Docs refused to allow flu shot this year.

Now have PN symptoms; pretty severe; I am new to the PN forum, just learning. Just diagnosed. I have almost if not ALL of your symptoms.

But I guess I just got used to having "STUFF" happening and

WHO wants to tell their docs a bunch of symptoms at each appointment? I hear they want to hear 2 or 3 at most.....

Sighh.......sorry to read about yours

Altho in hindsight I believe I have had the PN symptoms for quite a while, especially since the flu shot bit me in the you know where -
but they have recently escalated to where I really notice them and have much pain.

The myasthenia gravis and a few other miscellaneous diagnoses have kept me ill and busy enough trying to manage - but adding the PN.
O myyy = overwhelming at times.

The flu shot and PN and other illnessess. Hmmmm.......there must be a link!!!
[/QUOTE

So sorry. I as you know am a victim of the vaccine. No Meds or supplements have helped. I burn from my face arms and legs. I am off everything. Tried acupuncture, robotic laser therapy and am finished. I do get relief when I sit in direct sunlight. Warm weather helps.
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Old 05-01-2015, 10:05 AM #24
SoftTalker SoftTalker is offline
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Default To Posada

Oh

I am so sorry for you. I just read the above message from you and read a couple of your previous messages.

I hope that by now you have adjusted somewhat, and have at least a little support from your family.

This PN is not fun, in addition to your other serious health issues, I can only assume for you, it is really the PITS.

Life is not fair; we all know that. But sometimes the odds really seem stacked against some of us.

Hang in there.

Only we who have walked in these shoes understand.
And it is not always easy to walk, especially with PN.

I believe we with chronic illness often become stronger and wiser in our hearts and minds,,
when illness causes us to suffer.

Thanks again, hugs and thanks for your compassion, dear Posada.


SoftTalker
aka
SoftWalker



Edited to add:
I am so glad you live in Florida with lots of sunshine and warmth. Interesting how the heat helps your burning........

I live in a moderate part of the US, and the cooler weather (not cold) helps me, which is very good for my primary illness, which is Myasthenia Gravis. Heat is very bad for me.

Let's give thanks for being able to live in places which can, somewhat, make our health conditions a bit easier to deal with.
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Old 05-03-2015, 09:13 AM #25
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Smile Thank you

It would be nice if one day it all went away
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Old 10-13-2015, 06:54 PM #26
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Default Me too!

Tarheel15,
You posted that a flu shot gave you small fiber neuropathy, after receiving it on October of 2012. Lo and behold brother, I too had a influenza vaccination on October 12, 2012, and I still have SFN to the tune of 9 to 10 gabapentin a day and 50mg. of nortriptyline to just get to sleep. Thankfully, I have a great lawyer and am in vaccine court trying to recoup my financial losses. I hope you also are lawyered up. It's the only thing that keeps me not being all the way down. We have to fight or we just give up. Let me know if you are still on this website and how you are doing.
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Old 06-23-2017, 09:36 PM #27
tarheel15 tarheel15 is offline
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Originally Posted by SarahD. View Post
Tarheel15,
You posted that a flu shot gave you small fiber neuropathy, after receiving it on October of 2012. Lo and behold brother, I too had a influenza vaccination on October 12, 2012, and I still have SFN to the tune of 9 to 10 gabapentin a day and 50mg. of nortriptyline to just get to sleep. Thankfully, I have a great lawyer and am in vaccine court trying to recoup my financial losses. I hope you also are lawyered up. It's the only thing that keeps me not being all the way down. We have to fight or we just give up. Let me know if you are still on this website and how you are doing.

Sarah.. I apologize for replying so late. I am still suffering very much from the post vaccine small fiber neuropathy. It's hard for me to walk and stand now. I would like to discuss my case with you privately if that's ok. I too am struggling with the vaccine court to recoup losses.
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Old 09-02-2018, 11:00 AM #28
gotdp13 gotdp13 is offline
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Hi Sarah, how are your symptoms? Have you been successful in your case? My husband is suffering from what we believe is post flu vaccine polyneuropathy. He received the flu vaccine November 2017 and a week later came down with horrible flu like symptoms which morphed into a 4 month long sinus infection (my husband normally never gets sick). The illness then began to cause chronic insomnia as well as a crawling feeling in his face and burning/tingling sensations in his extremities. He has now developed constant muscle twitching and is at his breaking point. This has been very psychologically debilitating and his doctors just say he suffers from stress and anxiety bc MRIs and blood tests have come back negative. I am having trouble finding a lawyer that will take on the case. Have any recommendations? Thanks in advance!
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Old 09-08-2019, 11:59 PM #29
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Default Post influenza vaccine 11/2018

It sounds terrible what you all have experienced. I wanted to share that I experienced immediate flushing on my right forehead followed by little neural pings all over my body which started a couple hours after the influenza vaccine. It felt like getting splashed with hot oil, in all extremities, stomach, back, perineum. It continued for about a week, went away then came back for another week. I had one episode of intense neural pain on my lower left abdomen, it lasted about a minute. I finally kicked it by taking alpha lipoic acid. This was on top of high B12, high lipospheric vit C and high vit D that I always take. Probably you all have already tried this supplement (take it with food, gives horrible GI burning on empty stomach) but maybe it will help someone who had just started having symptoms. I also strangely started having pain on both sides of my nose about 2-3 wks after the vaccine that I think was a sinus infection, it persisted a long time (and occasionally still recurs) but has never really been bad enough to seek care. It is strange to me though because I have never had sinus issues. If anyone has suggestions on getting a medical waiver so I can avoid having another influenza vaccine please let me know. I will be seeing my PA soon about it and I’m hoping he will sign off on it. I wish you all the best
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Old 09-30-2019, 10:35 PM #30
djl87 djl87 is offline
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Default VACCINE reaction

I had a similar experience but after Hepatitis B vaccine . Symptoms Started one day after vaccine . Tingling starting in right thigh spread round whole body including face . I also had arm pain and burning sensations in legs . Following on from this leg pains and cramps and body wide muscle twitching developed . throbbing Nerve pain on left arm meant I was unable to sleep. I also had some difficulty breathing sometimes and I had some minor muscle atrophy . I was not diagnosed until MAY ... 4.75 months after initial symptoms started. I kept getting a load of BS from family physician and A and E doctors , that Vaccine shouldn't cause such symptoms and should go away on their own.... Have people never heard of autoimmune inflammatory neuropathies such as GBS that can present after vaccine with tingling as a first symptom . Only because finally my mother found an excellent consultant neurophysiologist , whom we saw private , did we get a diagnosis.. He conducted emg and nerve tests and autonomic tests and turned out i had a small fibre / sympathetic and motor neuropathy ... immunoglobulin could no longer help as the damage had been done and now i was starting to improve .... the recovery time is put at 2 years from MAY... the case is in the hands of the family lawyers now.... How many people find that physicians are just in complete denial about vaccine side effects .... They would rather let you die than help you!!! It seems that only the best neurologists and neurophysiologists will admit that vaccines do indeed cause rare side effects!!
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