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03-17-2015, 02:52 PM | #1 | ||
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Junior Member
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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. |
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04-16-2015, 10:14 AM | #2 | ||
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Junior Member
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04-30-2015, 10:23 PM | #3 | ||
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Junior Member
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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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10-13-2015, 06:54 PM | #4 | ||
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New Member
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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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"Thanks for this!" says: | madisongrrl (10-14-2015) |
06-23-2017, 09:36 PM | #5 | ||
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Junior Member
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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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09-08-2019, 11:59 PM | #6 | ||
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Newly Joined
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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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09-30-2019, 10:35 PM | #7 | ||
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Junior Member
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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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"Thanks for this!" says: | echoes long ago (10-01-2019) |
09-02-2018, 11:00 AM | #8 | ||
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Newly Joined
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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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"Thanks for this!" says: | echoes long ago (09-03-2018) |
10-04-2019, 05:44 PM | #9 | ||
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Junior Member
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Quote:
Either way, it just sucks! |
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