@chipster I don't know where you are located, but as an RN here in the United States I would say that it would be very difficult to get any physician to prescribe IVIG without an actual diagnosis. And keep in mind, IVIG is not without its own set of risks and side effects. I too am curious if anyone has managed to get this treatment and what the results were.
@agnieszka Thank you for posting this. I persist with numbness and tingling 6 weeks after my 4th Pfizer (yes, 4th!). My doctors all believe it is a vaccine reaction and will eventually resolve. All blood tests were normal, c spine without contrast MR normal, EMG and nerve studies, normal. My theory is that it may be a small fiber neuropathy which the only test for is a skin biopsy. A minor procedure but I doubt I will be able to convince anyone to do it. As a nurse I just know what they'll say, "Why bother? There is no treatment for it and it may or may not go away on its own". I tried gabapentin for several days but that just made me feel like a zombie, a tingling zombie. I am now on prednisone for another condition and it doesn't seem to be helping with the tingling. I believe no one really knows what is going on!
Yes, when I posted that I didn’t realize IVIG is such an involved procedure (I’m a lay person). Still, the presentation (at least in my case) sounds like a mild autoimmune Guillaine Barre-like syndrome and the recovery trajectory people are reporting sounds like this
GBS Symptom progression: The mean time to the peak of symptoms is 12 days (from 1st neurological symptoms), with 98% of patients reaching a peak by 4 weeks. A plateau phase of persistent, unchanging symptoms then ensues, followed days later by gradual symptom improvement[14]. Recovery usually begins 2-4 weeks after the progression ceases[15]. The mean time to clinical recovery is 200 days.
https://www.physio-pedia.com/Guillain-Barre_Syndrome
I’m any event I’m done speculating, just waiting on neurology appointment and trusting the body to heal itself.
Best wishes everyone
@chipster yes, at first I thought too that it was a mild GB presentation, but all my doctors and the actual EMG ruled that out. What they are calling it now is “skin paraesthesia “. Lol. Honestly, no one knows. I am counting on the body to eventually clear this out. Researching this online has been a dive into an abyss! And as so many friends and colleagues have died from COVID , I would definitely take these weird side effects over the alternative. Although I probably wouldn’t have taken the 4th Pfizer.
@chipster I have had a lot of the same issues. I had the first two Pfizer shots and was fine, the second one I had pins and needles in one hand for about 2 weeks but then it went and I was fine until I got the booster on 22nd Dec. I was fine for 2 weeks after thinking great no side effects and then it all started on 10th Jan. I went to bed on the Sunday night starting with a sunburn feeling on my upper back which now I know to be the burning tingling nerve pain. I’ve had this on my back, chest, soles of my feet and in my right leg. Sometimes even in my hands. My right leg also is constantly tingly with pins and needles and achey in my groin and behind my knee. Anyway, I suffered with all this for 7 weeks and at week 6 the nerve pain that was burning like sunburn got worse when I received some bad news at work (I think the news heightened my nerves). At week 6 I went to the dr who prescribed me gabapentin but I didn’t want to take it as I didn’t want to rely on meds and have to be Weened off etc and also I wanted to be aware of my side effects going. So, I started researching homeopathic remedies for nerve pain to see if I could help my pain with herbal remedies. I came across something called hypericum 30 which when researching said it helps burning nerve pain and tingling, at this point I had nothing to lose and bought it from Holland & Barrett in the Uk by Weleda but can be bought on Amazon. This was last Thursday when I was at week 7.5 of symptoms. So I started taking the tablets last Thursday and by the Saturday only 2 days later my burning nerve pain was drastically improved. I’m now 8.5 weeks down and my burning nerve pain is so much better, it now comes and goes. I have some days where I don’t feel it at all and then if I do it’s much more mild. The only issue that is still ongoing is my right leg tingling and pins and needles. My sisters friend had severe dizzy spells which lasted for 13 weeks and now she is fine and climbing mountains again. So, after 8 weeks my nerve pain has been improving and I’m hopeful that when I get to week 13 I will feel even better. I honestly think what we are experiencing is temporary and it just takes different time lines in each person to go away. End of the day if the vaccine was permanent we wouldn’t of needed boosters so this tells us it doesn’t last that long. Hope I’ve given you some reassurance that you do get better 🙂
@hailey hey just wondering if you’re still experiencing symptoms after catching covid? I was fully recovered from my vaccine for about 5 months and then caught covid beginning of February and am dealing with same brain fog symptoms I had with the vaccine.
@hailey hey just wondering if you’re still experiencing symptoms after catching covid? I was fully recovered from my vaccine for about 5 months and then caught covid beginning of February and am dealing with same brain fog symptoms I had with the vaccine.
Was wondering what other symptoms you had ? And what you took to get recover ?
@chesca17 Hi I have very similar symptoms to you. After first 2 Pfizer shots I noticed a hot flush in my lower right leg now and again and tingling numbness in feet. Now after the third shot of Pfizer 6 weeks ago I am experiencing a big increase in the hot flushes in my right lower leg and some days both feet feel numb all day long and I get done tightness in my face and hot flushes in my upper body too. It’s driving me mad
@nawpan I had very similar symptoms to you. They probably peaked 2-3 months after the vaccine and have now mostly resolved five months after the second dose. A good friends specialist advised her of a similar 4-6 month timeframe. I’m sorry my experience isn’t as positive as some, but if yours continue there’s still hope.
@vaxstuff22 I agree. The only test which came back abnormal for me was a positive ANA.
@ellie I have replied to a few people asking the same question. I’m sorry you’re suffering like this, but be reassured there’s many who’ve had the same symptoms and both me and a friend have recovered in approx five months. Unfortunately I have a scar on my chin from a fall as a lasting reminder of the vaccine.
@agnieszka My nerve conduction study was normal and I did consider further testing, but knew I didn’t want to take the meds suggested by my neurologist so didn’t bother. Now I’m recovering but have been advised to take things slowly. I have a vaccine exemption and will never take another trial vaccine again.
@miguelgr I felt this. I have been convinced I have ALS. I have full body muscle twitches too. I'm 11 weeks post 1st pfizer. Although they have slightly reduced they are still very much present. Also jerks when trying to sleep. Makes sleep difficult. Awaiting neurologist appointment but clear mri, ct scan and bloodwork so far. I won't be having jab 2 as advises by the Dr x
Do you still get those jerks when trying to sleep?
@chrish I’m having the exact same things happening to me me. I got the 2nd Pfizer vaccine July 21 and the tingling and twitching started July 22. When I googled symptoms (terrible idea) It had me thinking I had ALS or Parkinson’s. It’s terrifying. It the jerks that make it hrs to sleep for me too. The tingling I can handle.
Have the jerks gone away? Are you able to aleep peacefully now?
Has anyones tingling and numbness turned into sharp needle like pains...mine has now progressed to this and am freaking out. Neurologist appt is in January. My dr seems to think its Fibromyalgia and has flared ....its been 3 whole months of these symptoms and they don't go away. They only change!
I have reached this stage now. I can't bear it. It is so bad. Like someone piercing a needle deep into your skin.
Had been to a Neurologist last month when I had slight pins and needles and tremors. He did conclude fibromalgia which we all know is not the case.
Now it has just become bad. I feel like giving up on life. I'm scared.
Has anyone felt this and then got cured?
Hailey, how are you feeling now?