Hi everyone, just a bit of an update. I saw my neurologist again and he said he now has 20+ patients he is treating that are experiencing the same as all of us. He was honest in saying they don't know why it's happening or how to treat it because its just so new. The good news is he did say roughly half of those patients have recovered already, while others are taking longer. He said for some, anti depressants helped, some they didn't. He also said some had success with acupuncture and natural alternatives. Our bodies are all very different and how one takes to something may not work for others.
He said that all of these patients symptoms are increased when anxious or hormonal. He explained (for us ladies) that just like we may get a headache while on our period, our hormones are controlled by our brain which explains why we experience flare ups during these times. Our anxiety is heightened when hormonal.
He does believe that relaxing our minds and bodies will be the best healer for this. He said endorphins are the best thing so physical activity will help alot.
Like most people on here, I feared MS. I do have some spots on my brain which he said are quite normal and not in keeping with MS lesions. He will monitor these every 6 months for a few years. He was very confident in saying these are normal, likely caused by restricted blood vessels in my brain. Also they are old, so have been there since before vaccination. My lumbar puncture come back clear, praise God!
My advice for everyone would be to try and relax as much as possible. If our Drs are telling us we don't have something, please stop trying to diagnose yourselves. I am guilty of this and it mentally ruined me. I put myself through invasive tests like the lumbar puncture which I feel put more stress on my body and flared up my symptoms, prolonging my recovery. It wasn't nice. If we can avoid unnecessary tests like this, do it.
Many people on here have said that when they are distracted or busy they don't notice their symptoms. I personally have let this consume my mind for 6 months and I feel this has hindered my recovery. My goal is to work on my mindset.
I will continue to pray that we all recover from this nightmare. When you are having a bad day just remember, we are one day closer to full recovery. It is more than possible and we will get there.
@seatempest Thank you so much for sharing and answering my questions. That's great that the cold water stops your twitching. I have now started cold showers myself. I read that helps with our nervous systems.
Can I ask you another question please? What's your experience been with acupuncture? How many sessions have you had? Which symptoms did you think it relieved etc? Did you have any flare ups after your session? Jessica (on this forum) also mentioned that her neurologist said that some people have found acupuncture really beneficial. It would be great hearing about your experience. Thank you!! I have also read that it's best to have 3 sessions before knowing if it's helpful.
I just wanted to add one more thing. When considering a new medication, treatment or procedure please weigh up benefits vs risks. Our bodies dont need to be suffering any more than what they already are. Just because something works for one person it doesn't mean it will for others. When I first joined this forum I was (and still am) so desperate for help. I would read what others were taking and I would take it too. Please do your research first. It is so great to share advice, experiences and ideas on here.. I am so grateful to have others to share with, as long as we research it ourselves first.
@carini Hi. How are you going now? Did the gabapentin reduce or stop your pins and needles? What exactly did it help with? Did you experience any side effects from gabapentin? Thank you for your time
@buzzgirl Hi buzzgirl, yes the gabapentin did allow me to sleep through the nights and possibly decreased the pins and needles. other than really stinky farts, not too many side affects for me 🙂 . I think there are other meds neurologists can suggest as well, but like the post above weigh up benefits vs risks of new meds with your Dr. As time goes on it seems overall i am improving but i definitely have neuropathy in my right foot. The full body flushing has also decreased for me. i thought it never would. I think it happened once in the last month, while in dec/jan. it was a daily occurrence. Additionally i have been going to a chiropractor who has been using cold laser therapy, and has loosened up the cramped muscle in my calf, and ankle. Its been 4 months since the onset of my symptoms (body flushing, pins and needles in hands, right foot, cramped leg) and all of them have decreased in pain level and is manageable. It could be the gabapentin, chiro, and or the time passing. Exercising also seemed to help a little for me.
My positive thoughts are with you and everyone else going through this painful stuff.
@buzzgirl Hi buzzgirl, yes the gabapentin did allow me to sleep through the nights and possibly decreased the pins and needles. other than really stinky farts, not too many side affects for me 🙂 . I think there are other meds neurologists can suggest as well, but like the post above weigh up benefits vs risks of new meds with your Dr. As time goes on it seems overall i am improving but i definitely have neuropathy in my right foot. The full body flushing has also decreased for me. i thought it never would. I think it happened once in the last month, while in dec/jan. it was a daily occurrence. Additionally i have been going to a chiropractor who has been using cold laser therapy, and has loosened up the cramped muscle in my calf, and ankle. Its been 4 months since the onset of my symptoms (body flushing, pins and needles in hands, right foot, cramped leg) and all of them have decreased in pain level and is manageable. It could be the gabapentin, chiro, and or the time passing. Exercising also seemed to help a little for me.
My positive thoughts are with you and everyone else going through this painful stuff.
Have you taken any supplements ?
And insomnia.
@chesca17 Hi. How are you feeling now?
Hi @buzzgirl thank you for asking. So it’s been 12 weeks now going into week 13 and the burning nerve pain is better. I used to have burning tingling nerve pain every day and now I can tell it’s getting weaker as I may only get it once a week. The covid toe I had is completely gone where I had red patches on my toes and heels and soles of feet. I’ve never had covid by the way, this is all side effects of the 3rd Pfizer booster jab. My main symptoms that are remaining are groin pain in my right leg - feels like a dull ache. Then I still have some pins and needles in the right leg - again this is improved as it used to be constant and in both feet and the right leg but now it isn’t constant anymore and just comes and goes in the right leg and right foot. I truly believe that by month 5-6 all my symptoms will be gone as I am currently 3 months in and already seeing improvements. From what I’ve been reading it seems people start to notice improvement at around the stage I’m at (3 months) and then continue to improve upto 6 months.
i have also been taking the following supplements every day:
magnesium glycinate
tumeric and ginger
vitamin b12 500mg
vitamin b complex
hot baths helped me when my nerve pain and pins and needles were bad and also a massage gun.
how are you doing?
@chesca17 thanks for your quick response. Yes definitely try and avoid C virus if you can. It may have stirred up my symptoms as I was making progress but now have stinging in my arms. I am curious about your comment about Hypericum 30 by weleda. I presume you are no longer taking it? It appears to be similar to St John's Wart. Can you please share your experience with Hypericum? Thank you
@chesca17 thanks for your quick response. Yes definitely try and avoid C virus if you can. It may have stirred up my symptoms as I was making progress but now have stinging in my arms. I am curious about your comment about Hypericum 30 by weleda. I presume you are no longer taking it? It appears to be similar to St John's Wart. Can you please share your experience with Hypericum? Thank you
@buzzgirl when I first took hypericum after 2 days I felt my constant burning tingling nerve pain completely subside for a few days. It did come back but it’s never come back every single day 7 days a week as I said I suffer for less days of a week now. It could be a coincidence that my symptoms started to improve at the same time I took the hypericum but everything else I had tried upto that point hadn’t worked - this was about 7-8 weeks into symptoms that I took hypericum. It’s worth a go for a natural homeopathic remedy. I didn’t want to get any prescription meds and chosen to go down the natural supplements route. I no longer take the hypericum as you can only take it for a maximum of 4 weeks when I phoned Holland & Barrett nutrition line but I don’t feel like I really need it for the nerve pain anymore anyway.
@chesca17 thanks for your quick response. Yes definitely try and avoid C virus if you can. It may have stirred up my symptoms as I was making progress but now have stinging in my arms. I am curious about your comment about Hypericum 30 by weleda. I presume you are no longer taking it? It appears to be similar to St John's Wart. Can you please share your experience with Hypericum? Thank you
@buzzgirl when I first took hypericum after 2 days I felt my constant burning tingling nerve pain completely subside for a few days. It did come back but it’s never come back every single day 7 days a week as I said I suffer for less days of a week now. It could be a coincidence that my symptoms started to improve at the same time I took the hypericum but everything else I had tried upto that point hadn’t worked - this was about 7-8 weeks into symptoms that I took hypericum. It’s worth a go for a natural homeopathic remedy. I didn’t want to get any prescription meds and chosen to go down the natural supplements route. I no longer take the hypericum as you can only take it for a maximum of 4 weeks when I phoned Holland & Barrett nutrition line but I don’t feel like I really need it for the nerve pain anymore anyway.
Sorry what did yiu do for nerve pain ?