@medee I thought you got better from your nerve pain and ear fullness or am I thinking of someone else?
Not sure, Ethan. I don't have ear fullness but I have ringing in my left ear. It is almost the whole day esp. in the nights.
I do have nerve pain still. I get it at times. Aling with that I hsve sharp and poky puns and needles which makes me scream in pain when it happens.
Along with these I have host of other symptoms as well.
Also did anybody who recovered ever try IVIG which uses antibodies to battle this autoimmune disease caused by the vaccine antibodies along with steroids?
I have asked for these but the docs all say there are no studies saying they are safe and effective for this. I’m like….well no one knew how to treat covid either but you all muddled through. Someone has to step up and try something. I’m going to ask otolaryngology this week and neuro immunology at the end of the month. I’m going to beg actually.
@medee did you have 1 or 2 Moderna shots? Seems my symptoms are similar ear fullness in left ear. Also a lot of tingling like nerves inflamed and muscle twitches. Was their any meds that helped you recover?
hey ethan, where do you have your muscle twitches? Mine are in my lower legs and they've been going on for about 4 months now. My neuro doc prescribed gabapentin for me which reduced the aching pains and cramping but the twitches never go away. i'm also on 600mg of magnesium glycinate per day (primary doc's recommendation) but it doesn't help either. Anyway, please let me know how it goes with your neurologist appointment. My next appointment is on Jan 13.
I see you took your shots in April. How are you doing overall now?
I feel good other than my neurological issues. Almost feel like I felt before the shots actually. I fear that during this nightmare my neurons were damaged and they'll take a while to heal, and maybe not heal at all. Oh, and during the myriad of blood tests I've had during this ordeal, it turns out that I came up positive for Bartonella (similar to Lyme disease), which my doctor believes was being kept in check by my immune system but may have been reactivated by the vaccine. There could be a link here to my neuro issues but not entirely sure. I'm starting a pretty aggressive course of antibiotics next week to try and get rid of it.
I have not heard that one yet. How did your doc come up with that to test for I wonder? What are your neurological symptoms?
Also do you have a low grade temp and what all did your doc test for if you don’t mind me asking? I’m going to see a neuro immunologist at the end of January. That is my last hope. All the other docs I have seen have been useless.
My doc ran some tests to look at my T-cells/immune system. I believe it's called a flow cytometry test looking at CD4/CD8/CD57. Turned out CD57 was low which points to Lyme disease. So, we then performed a bunch of Lyme disease tests and while it showed up overall negative for Lyme, one of the bands they tested for showed up positive. Then, we did a more detailed Lyme panel with a specialized lab (IGenex) and that's how Bartonella showed up. Neuro symptoms include muscle twitching in lower legs, dry mouth issues and problems swallowing, and some minor bowel/bladder issues. MRI of brain (with and without contrast), and NCV/EMG tests all clear so far. I fear ALS but had appointment recently with neurologist who told me it's not that. No low-grade temp.
This is the kind of blood panel I wanted but immunology said they didn’t have a test to order to look at my immune system…..umm okay. It was an academic medical university. What kind kid doc ordered this?
Hey Y'all!
While we all enter a new year, I just wanna thank you all for making my 2021 a little better.
Though we've know we've not known each other, it is immensely heart touching to see so many people helping each other while they themselves have been struggling.
I would've gone crazy or done something by now if I hadn't reached this forum and met all of y'all.
While we all are at our lowest, I hope we soon get back to our normal lives before we injected this substance.
I wanna thank you all for the little words of encouragement and support you've put to make me feel better. You all were my saviors indeed!
While I am not sure what this madness will turn my life into and where will I end-up but, I hope I make it through and get back to my normal old self when I wish everyone towards the end of next year.🤍
I wish you all a blessed and a beautiful 2022 and further years to come.😊
I hope 2022 be our year of complete recovery from this nightmare. Take care you all.
Hi, I hope you see this msg as you are the only person I can find that has been told this is CNS demyelination. I have been experiencing side effects since my first pfizer and my MRI has just revealed demyelination. This has me extremely anxious and a Google search goes straight to MS and not much more. Could you please share some insight to what else your Neurologist said about this. Does this mean MS or will it go away? Do you have to take medication? Will it progress? I'm so sorry for all of the questions but I am desperate. Any information would be very much appreciated.
Responded via PM 🙂
@swtammie78 Can I get some information as well? I’ve been battling this since April/May and haven’t had any kind of diagnosis. Best guess for me is something that’s messed up my CNS completely. I read on CNS Demyelination and that seems to be what I’m going through. I did a run of prednisone in October, and that gave me relief for about a month. The beginning of December I started going downhill again so I’m in the middle of another run of prednisone.
Any info would be much appreciated!
Happy New Year to all.
Same to you KitKat. And to everyone on this forum. You have no idea how important you've been to me this past month ❤️
Aww thanks so much I'm so touched to read your comment. It's amazing how a group of strangers from all around the world can come together and offer each other support, advice and encouragement.
Thanks to all the forum members on here past and present who's stories, links and advice have helped me to keep a positive mental attitude and to focus and believe in making my recovery happen.
Positive vibes to all.
@medee Well, I'm still a ways from being recovered, I've just started having a few days where I feel almost back to normal. But they are just days here and there, so I still have days where I feel crappy. But I hope this will get better.
@medee Yes unfortunately I did have a relapse. I was fine for about 10 days, then I had a relapse but with milder head sensations and dizziness than at the beginning of this ordeal. Last week was actually pretty good again, almost normal. So the road to what I hope is recovery is still bumpy. I'm going to see an NP next week so we'll see where that goes. I am trying not to be too skeptical about getting any answers out of that
How are you doing now?
I just feel I am getting worse. I am frustrated already. Sorry but no good news from my side for now.🥲
Which of your symptoms are getting worse?
My heart rate. It had gone back to normal a few weeks ago. It's again acting up past 4-5 days now. A slight change in emotions and boom it acts up. Even if you listen to music, sing or talk a bit loudly, it come back this is what I have noticed.
Got new symptoms - bone craking and stomach growls. The growling is too loud and long at times. It sounds like frogs screaming in my tummy or like someone is breaking stones inside. Sounds funny but the sounds are exactly that. This started I guess around a week ago.
I also have sharp shooting pain in my nerves. So bad that I scream in pain. These are sort of like pins and needles but very very sharp. I get it on and off but moreso in my head.
The twitching and tingling still continues along with tinnitus.🥺
Apart from the brain MRI, I've done all tests and all came back fine. I am still to do the MRI. Haven't done it as I am concerned it might aggravate the tinnitus.
I had sudden onset joint crackling/popping about two months after my Pfizer vaccine. It lasted for about two months. Most of my joints were affected but my spine was the worst. It was very loud like the sound of bubble wrap being popped. I read it's a sign of joint inflammation. The noises have stopped since I started omega 3 fish oil. I still have dull aches in all my joints most of the time. Feels like arthritis.
I also get the sudden sharp pin prick stabbing pains. Mostly in the ends of my fingers and toes but also less often in my face and brain. I read on a plastic surgeons website for treating nerves after surgery or reattaching limbs that nerve regeneration after trauma can be very painful and feel like burning/electric shocks. As our nerves have been attacked by our immune system trying to fight off the stuff in the vax it makes sense that they are now hurting and inflammed as they are trying to regenerate. I have read a few different surgeons discussions on nerve regrowth and repair and the common theme is that it does take many many months to get better. Anywhere from 6m to 12m is normal but it's also is not uncommon to take several years. (I'm hoping ours is quicker).
I think the key to speeding up recovery is to focus on inflammation. I'm 5 month out from my jab and I've had a few flare ups along the way but I'm nowhere near as ill as I was in the beginning. On a good day I hardly notice my pins and needles now. I'm wondering if your flare up is happening because you are getting run down or worrying alot? Each time I have a flare up I have always been stressed and coming down with a cold. I reckon this flare up you are having won't last long mine usually lasted no more than a fortnight each time.
I have read some people have felt some relief after using a TENS machine.
@medee did you have 1 or 2 Moderna shots? Seems my symptoms are similar ear fullness in left ear. Also a lot of tingling like nerves inflamed and muscle twitches. Was their any meds that helped you recover?
hey ethan, where do you have your muscle twitches? Mine are in my lower legs and they've been going on for about 4 months now. My neuro doc prescribed gabapentin for me which reduced the aching pains and cramping but the twitches never go away. i'm also on 600mg of magnesium glycinate per day (primary doc's recommendation) but it doesn't help either. Anyway, please let me know how it goes with your neurologist appointment. My next appointment is on Jan 13.
I see you took your shots in April. How are you doing overall now?
I feel good other than my neurological issues. Almost feel like I felt before the shots actually. I fear that during this nightmare my neurons were damaged and they'll take a while to heal, and maybe not heal at all. Oh, and during the myriad of blood tests I've had during this ordeal, it turns out that I came up positive for Bartonella (similar to Lyme disease), which my doctor believes was being kept in check by my immune system but may have been reactivated by the vaccine. There could be a link here to my neuro issues but not entirely sure. I'm starting a pretty aggressive course of antibiotics next week to try and get rid of it.
I have not heard that one yet. How did your doc come up with that to test for I wonder? What are your neurological symptoms?
Also do you have a low grade temp and what all did your doc test for if you don’t mind me asking? I’m going to see a neuro immunologist at the end of January. That is my last hope. All the other docs I have seen have been useless.
My doc ran some tests to look at my T-cells/immune system. I believe it's called a flow cytometry test looking at CD4/CD8/CD57. Turned out CD57 was low which points to Lyme disease. So, we then performed a bunch of Lyme disease tests and while it showed up overall negative for Lyme, one of the bands they tested for showed up positive. Then, we did a more detailed Lyme panel with a specialized lab (IGenex) and that's how Bartonella showed up. Neuro symptoms include muscle twitching in lower legs, dry mouth issues and problems swallowing, and some minor bowel/bladder issues. MRI of brain (with and without contrast), and NCV/EMG tests all clear so far. I fear ALS but had appointment recently with neurologist who told me it's not that. No low-grade temp.
This is the kind of blood panel I wanted but immunology said they didn’t have a test to order to look at my immune system…..umm okay. It was an academic medical university. What kind kid doc ordered this?
My primary care doc ordered this. She practices functional medicine so is more inclined to search for root cause rather than follow a script based on symptoms. Oh, and one other symptom I have that I should mention ... tinnitus in left ear. I sometimes forget to mention it because the others tend to consume me.
@medee Yes unfortunately I did have a relapse. I was fine for about 10 days, then I had a relapse but with milder head sensations and dizziness than at the beginning of this ordeal. Last week was actually pretty good again, almost normal. So the road to what I hope is recovery is still bumpy. I'm going to see an NP next week so we'll see where that goes. I am trying not to be too skeptical about getting any answers out of that
How are you doing now?
I just feel I am getting worse. I am frustrated already. Sorry but no good news from my side for now.🥲
Which of your symptoms are getting worse?
My heart rate. It had gone back to normal a few weeks ago. It's again acting up past 4-5 days now. A slight change in emotions and boom it acts up. Even if you listen to music, sing or talk a bit loudly, it come back this is what I have noticed.
Got new symptoms - bone craking and stomach growls. The growling is too loud and long at times. It sounds like frogs screaming in my tummy or like someone is breaking stones inside. Sounds funny but the sounds are exactly that. This started I guess around a week ago.
I also have sharp shooting pain in my nerves. So bad that I scream in pain. These are sort of like pins and needles but very very sharp. I get it on and off but moreso in my head.
The twitching and tingling still continues along with tinnitus.🥺
Apart from the brain MRI, I've done all tests and all came back fine. I am still to do the MRI. Haven't done it as I am concerned it might aggravate the tinnitus.
I had sudden onset joint crackling/popping about two months after my Pfizer vaccine. It lasted for about two months. Most of my joints were affected but my spine was the worst. It was very loud like the sound of bubble wrap being popped. I read it's a sign of joint inflammation. The noises have stopped since I started omega 3 fish oil. I still have dull aches in all my joints most of the time. Feels like arthritis.
I also get the sudden sharp pin prick stabbing pains. Mostly in the ends of my fingers and toes but also less often in my face and brain. I read on a plastic surgeons website for treating nerves after surgery or reattaching limbs that nerve regeneration after trauma can be very painful and feel like burning/electric shocks. As our nerves have been attacked by our immune system trying to fight off the stuff in the vax it makes sense that they are now hurting and inflammed as they are trying to regenerate. I have read a few different surgeons discussions on nerve regrowth and repair and the common theme is that it does take many many months to get better. Anywhere from 6m to 12m is normal but it's also is not uncommon to take several years. (I'm hoping ours is quicker).
I think the key to speeding up recovery is to focus on inflammation. I'm 5 month out from my jab and I've had a few flare ups along the way but I'm nowhere near as ill as I was in the beginning. On a good day I hardly notice my pins and needles now. I'm wondering if your flare up is happening because you are getting run down or worrying alot? Each time I have a flare up I have always been stressed and coming down with a cold. I reckon this flare up you are having won't last long mine usually lasted no more than a fortnight each time.
I have read some people have felt some relief after using a TENS machine.
I don't know what a TENS machine is but I will look it up. I have now calmed down a bit mentally as I feel there is no point stressing over it; however, this all madness has been impacting my work and that messes with my mind. I can't leave my job as I am the only earning member in my family.
I am for now taking a multi vitamin tablet and will try fish oil soon. Apart from that only intaking anti inflammatory drinks and food. Sleep has been a challenge for me since the onset of all symptoms.
I will soon complete 3 months into this on 9th Jan. I really hope this nightmare ends soon as my whole life is swinging on the edge right now!
@medee did you have 1 or 2 Moderna shots? Seems my symptoms are similar ear fullness in left ear. Also a lot of tingling like nerves inflamed and muscle twitches. Was their any meds that helped you recover?
hey ethan, where do you have your muscle twitches? Mine are in my lower legs and they've been going on for about 4 months now. My neuro doc prescribed gabapentin for me which reduced the aching pains and cramping but the twitches never go away. i'm also on 600mg of magnesium glycinate per day (primary doc's recommendation) but it doesn't help either. Anyway, please let me know how it goes with your neurologist appointment. My next appointment is on Jan 13.
I see you took your shots in April. How are you doing overall now?
I feel good other than my neurological issues. Almost feel like I felt before the shots actually. I fear that during this nightmare my neurons were damaged and they'll take a while to heal, and maybe not heal at all. Oh, and during the myriad of blood tests I've had during this ordeal, it turns out that I came up positive for Bartonella (similar to Lyme disease), which my doctor believes was being kept in check by my immune system but may have been reactivated by the vaccine. There could be a link here to my neuro issues but not entirely sure. I'm starting a pretty aggressive course of antibiotics next week to try and get rid of it.
I have not heard that one yet. How did your doc come up with that to test for I wonder? What are your neurological symptoms?
Also do you have a low grade temp and what all did your doc test for if you don’t mind me asking? I’m going to see a neuro immunologist at the end of January. That is my last hope. All the other docs I have seen have been useless.
My doc ran some tests to look at my T-cells/immune system. I believe it's called a flow cytometry test looking at CD4/CD8/CD57. Turned out CD57 was low which points to Lyme disease. So, we then performed a bunch of Lyme disease tests and while it showed up overall negative for Lyme, one of the bands they tested for showed up positive. Then, we did a more detailed Lyme panel with a specialized lab (IGenex) and that's how Bartonella showed up. Neuro symptoms include muscle twitching in lower legs, dry mouth issues and problems swallowing, and some minor bowel/bladder issues. MRI of brain (with and without contrast), and NCV/EMG tests all clear so far. I fear ALS but had appointment recently with neurologist who told me it's not that. No low-grade temp.
This is the kind of blood panel I wanted but immunology said they didn’t have a test to order to look at my immune system…..umm okay. It was an academic medical university. What kind kid doc ordered this?
My primary care doc ordered this. She practices functional medicine so is more inclined to search for root cause rather than follow a script based on symptoms. Oh, and one other symptom I have that I should mention ... tinnitus in left ear. I sometimes forget to mention it because the others tend to consume me.
I too have tinnitus in my left ear. Got it checked just 2-3 days ago. The report came back normal. They again put it ob stress and anxiety and asked me to ignore.
I was in October given a ear drop. I on my own again started using it today to see if it helps. Back then the tinnitus had gone away in few days and used to be there only sometimes. Now its continous since Nov.
Let's see if the ear drops help.
@medee did you have 1 or 2 Moderna shots? Seems my symptoms are similar ear fullness in left ear. Also a lot of tingling like nerves inflamed and muscle twitches. Was their any meds that helped you recover?
hey ethan, where do you have your muscle twitches? Mine are in my lower legs and they've been going on for about 4 months now. My neuro doc prescribed gabapentin for me which reduced the aching pains and cramping but the twitches never go away. i'm also on 600mg of magnesium glycinate per day (primary doc's recommendation) but it doesn't help either. Anyway, please let me know how it goes with your neurologist appointment. My next appointment is on Jan 13.
I see you took your shots in April. How are you doing overall now?
I feel good other than my neurological issues. Almost feel like I felt before the shots actually. I fear that during this nightmare my neurons were damaged and they'll take a while to heal, and maybe not heal at all. Oh, and during the myriad of blood tests I've had during this ordeal, it turns out that I came up positive for Bartonella (similar to Lyme disease), which my doctor believes was being kept in check by my immune system but may have been reactivated by the vaccine. There could be a link here to my neuro issues but not entirely sure. I'm starting a pretty aggressive course of antibiotics next week to try and get rid of it.
I have not heard that one yet. How did your doc come up with that to test for I wonder? What are your neurological symptoms?
Also do you have a low grade temp and what all did your doc test for if you don’t mind me asking? I’m going to see a neuro immunologist at the end of January. That is my last hope. All the other docs I have seen have been useless.
My doc ran some tests to look at my T-cells/immune system. I believe it's called a flow cytometry test looking at CD4/CD8/CD57. Turned out CD57 was low which points to Lyme disease. So, we then performed a bunch of Lyme disease tests and while it showed up overall negative for Lyme, one of the bands they tested for showed up positive. Then, we did a more detailed Lyme panel with a specialized lab (IGenex) and that's how Bartonella showed up. Neuro symptoms include muscle twitching in lower legs, dry mouth issues and problems swallowing, and some minor bowel/bladder issues. MRI of brain (with and without contrast), and NCV/EMG tests all clear so far. I fear ALS but had appointment recently with neurologist who told me it's not that. No low-grade temp.
This is the kind of blood panel I wanted but immunology said they didn’t have a test to order to look at my immune system…..umm okay. It was an academic medical university. What kind kid doc ordered this?
My primary care doc ordered this. She practices functional medicine so is more inclined to search for root cause rather than follow a script based on symptoms. Oh, and one other symptom I have that I should mention ... tinnitus in left ear. I sometimes forget to mention it because the others tend to consume me.
Yes, I’m all about root cause not symptom based medicine. Functional medicine costs out of pocket for me…..I have great insurance but I don’t think it covers functional medicine. Does your doc think this is the cause of your neurological symptoms? I have had tons of different symptoms but the ones now are occasional ear pain, tinnitus, tooth nerve pain, low grade temp, dull headache and occasional numbness in limbs but not as bad as it had been.