About 9 months post vax I developed tremors ( internal tremors started weeks after vax) My fingers looked like I was always playing the piano and my whole body twitched. I was on baclofen for a month and then almost all tremors resolved. I don’t need to take it anymore. I’m not sure if it resolved because of meds or time.
Same here post vax also. Have found nothing that helps. But it has subsided during day just my legs especially strong at night with weakness in walking.
Same here post vax also. Have found nothing that helps. But it has subsided during day just my legs especially strong at night with weakness in walking.
I have prayed for 2 years to be able to go to the Mayo..but I have not been accepted and turned me down because of my insurance. I hsve been affected literally head to foot with e everything in between. Sadly, I had to apply for Disability. Irs a hard pill to swallow at 57. It started with stomach pain in mY of 21. 3 1/2 weeks later I came out with half my kidney that has infar Ted whi h means dead. I have chronic fatigue, depression, anxiety, severe tinnitus, lost a 1/4 of my hearing. I have an immune deficiency which has made it worse. My labs show I have various blood diseases that are shown to be indicators of Covid. Protein C, factor v. Factor v111, d dimer, igg deficiency which now I have to get weekly infusions. I have severe brain fog, tremors to where I almost can't write. I'm meeting with a neurosurgeon on Monday, I was told a few weeks ago I have 2 aneurysms 😳 I sleep about 3 hrs a night and have been told I have stage 2 esophogit6. Oddly enough I have adth6but have not even had to use my inhaler.
This has been the longest 2 yrs. My nephrologis recommended the May after my 2nd visit, DENIED, Then Barnes Jewush in st. Louis DENIED then National jewish in Denver. They have a top rating for immunology and asthma w a great Covid clinic. My dr put in referal in February of 22 and sounded promising. He put it as URGENT as all insurance companies and physicians know thT means a 62 hr response with an approval or denial. Well, let's just say 100 plus phone calls, my dr and nurse faxed and relaxed over 100 pages, broken promises etc. 4 in a half months later, ALMOST 5, I WAS DENIED. THIS SHOULD BE CONSIDERED ILLEGAL. THEY ARE AND HAVE BEEN HOLDING MY LIFE IN THEIR HANDS TO DECIDE IF IM WORTHY OF LIVING. All this has affected every aspect of my life and NOW in process of going on disability. I have no money, rental assistance from the state of kansas ended so sitting here worried every night ad I go to bed, of I will wake up. With my factor v111 disorder it is a far greater possibility of having a blood clot at any point. I follow Dr V's podcasts and read articles. He spoke about long haul cobid patients and how we have to treat like people gave long haul and then cross off symptoms because this will result in 1 out of 3 people going on disability. Well here I am. I just wonder where I would be had I got any help almost 2 years ago? It's quite sad. My kids are 20 and 21 away at college. I've raised them since 2013 on my own since their father passed away. I would like to think I could live plenty more years to see them grow. But I'm really questioning how long I have. Every month I'm in the er or hospital and they find more and more. My body is manifesting from inside out. Now have full blown psoriasiss. It's so bad I'm beginning to isolate. Half of my friends think I'm crazy or just lazy. Believe me I wouldn't wish this on anyone.
I just spent 10 days at Mayo for a post/Covid work up. I can’t recommend them highly enough! I saw Dr. Overgaard in the consultative medicine group. If you can get yourself to Mayo, then do it. You can refer yourself. Just call the main Mayo number and ask for a long Covid clinic appt. (My stay was a bit longer than usual because I have other issues too). They have a great program.
I wish I could. They told me I had to pay over 8-10,000 just fir a consult.i am barely making it with no income. Because I'm on Healthcare exchange they said no.
Is there any way to determine this once and for all? I have been given a PD diagnosis by 4 neurologists, and none of them even bothered to investigate other possibilities. Not even after two of them admitting this could be from COVID. I also came across this article about third wave of COVID being PD, and it worries me a lot. Too bad May Clinic is not letting me post the link since I am new.
Given the PD diagnosis by 4 neurlogists, sorry to hear that. What symptoms do you have and what testing did they do if you don't mind me asking?
Best to you!
Thanks for asking. I have mostly tremors and some muscle stiffness. It's all on my right side, my dominant side of course. They did only clinical testing, I'm not a fan of having dye injected into my brain so that we could do a dat which apparently doesn't necessarily confirm anything anyway. It's been rough. The few COVID docs I have gone to are pretty convinced this is from long COVID. So it's what I am attempting to treat right now.
I have prayed for 2 years to be able to go to the Mayo..but I have not been accepted and turned me down because of my insurance. I hsve been affected literally head to foot with e everything in between. Sadly, I had to apply for Disability. Irs a hard pill to swallow at 57. It started with stomach pain in mY of 21. 3 1/2 weeks later I came out with half my kidney that has infar Ted whi h means dead. I have chronic fatigue, depression, anxiety, severe tinnitus, lost a 1/4 of my hearing. I have an immune deficiency which has made it worse. My labs show I have various blood diseases that are shown to be indicators of Covid. Protein C, factor v. Factor v111, d dimer, igg deficiency which now I have to get weekly infusions. I have severe brain fog, tremors to where I almost can't write. I'm meeting with a neurosurgeon on Monday, I was told a few weeks ago I have 2 aneurysms 😳 I sleep about 3 hrs a night and have been told I have stage 2 esophogit6. Oddly enough I have adth6but have not even had to use my inhaler.
This has been the longest 2 yrs. My nephrologis recommended the May after my 2nd visit, DENIED, Then Barnes Jewush in st. Louis DENIED then National jewish in Denver. They have a top rating for immunology and asthma w a great Covid clinic. My dr put in referal in February of 22 and sounded promising. He put it as URGENT as all insurance companies and physicians know thT means a 62 hr response with an approval or denial. Well, let's just say 100 plus phone calls, my dr and nurse faxed and relaxed over 100 pages, broken promises etc. 4 in a half months later, ALMOST 5, I WAS DENIED. THIS SHOULD BE CONSIDERED ILLEGAL. THEY ARE AND HAVE BEEN HOLDING MY LIFE IN THEIR HANDS TO DECIDE IF IM WORTHY OF LIVING. All this has affected every aspect of my life and NOW in process of going on disability. I have no money, rental assistance from the state of kansas ended so sitting here worried every night ad I go to bed, of I will wake up. With my factor v111 disorder it is a far greater possibility of having a blood clot at any point. I follow Dr V's podcasts and read articles. He spoke about long haul cobid patients and how we have to treat like people gave long haul and then cross off symptoms because this will result in 1 out of 3 people going on disability. Well here I am. I just wonder where I would be had I got any help almost 2 years ago? It's quite sad. My kids are 20 and 21 away at college. I've raised them since 2013 on my own since their father passed away. I would like to think I could live plenty more years to see them grow. But I'm really questioning how long I have. Every month I'm in the er or hospital and they find more and more. My body is manifesting from inside out. Now have full blown psoriasiss. It's so bad I'm beginning to isolate. Half of my friends think I'm crazy or just lazy. Believe me I wouldn't wish this on anyone.
I too have very similar issues like you and just found this but it is 3am and my story is so long and I didn’t want to miss this so hopefully will find my way back to this page to explain my story. I too cannot sleep body breaking down more and more everyday for I have no idea how I’m even still alive but fighting and realizing that I can’t fight this anymore. I needed help last December and never did get help but had many tests with many abnormalities and hope to share with u because u are not alone. Praying 🙏 for all that have ever felt anything close to this.🥲 I too have people and family that just ignore me and act like I’m making this all up and I’ve bee struggling to live with no help and everyone wants to tell me how to behave and act and not to even whimper because my pain is so extreme. I am told we all don’t feel well 😳
I too have very similar issues like you and just found this but it is 3am and my story is so long and I didn’t want to miss this so hopefully will find my way back to this page to explain my story. I too cannot sleep body breaking down more and more everyday for I have no idea how I’m even still alive but fighting and realizing that I can’t fight this anymore. I needed help last December and never did get help but had many tests with many abnormalities and hope to share with u because u are not alone. Praying 🙏 for all that have ever felt anything close to this.🥲 I too have people and family that just ignore me and act like I’m making this all up and I’ve bee struggling to live with no help and everyone wants to tell me how to behave and act and not to even whimper because my pain is so extreme. I am told we all don’t feel well 😳
Please don’t loose hope as others not experiencing this is just their ignorance talking. My friend is a nurse and suggested small spoonful of mustard for painful cramping muscles. Also 1-2 brazil nuts a day that contain selenium have helped me. I personally have tried things all natural as medications seem to trigger other symptoms in me🙃 You will find things that help your body and get through this!
Spasms can be alleviated or lessened by salt supplements containing Na,K,Mg. These are also helpful with neurological disorders. Some good ones are LMNT or Saltstix or lots of others on the market. Hydration is critical. Just mix one into water or any drink each day and it will really help with cramping.
Connect
Connect
Like
Helpful
Hug
Same here post vax also. Have found nothing that helps. But it has subsided during day just my legs especially strong at night with weakness in walking.
-
Like -
Helpful -
Hug
1 ReactionI’m with you on that too. I have developed neuropathy on my lower legs in the areas that twitched the most.
If anyone knows how to get to the Mayo or anywhere please let me know. I'm pretty desperate. I didn't think Mayo turned anyone down.
-
Like -
Helpful -
Hug
1 ReactionI wish I could. They told me I had to pay over 8-10,000 just fir a consult.i am barely making it with no income. Because I'm on Healthcare exchange they said no.
Given the PD diagnosis by 4 neurlogists, sorry to hear that. What symptoms do you have and what testing did they do if you don't mind me asking?
Best to you!
Thanks for asking. I have mostly tremors and some muscle stiffness. It's all on my right side, my dominant side of course. They did only clinical testing, I'm not a fan of having dye injected into my brain so that we could do a dat which apparently doesn't necessarily confirm anything anyway. It's been rough. The few COVID docs I have gone to are pretty convinced this is from long COVID. So it's what I am attempting to treat right now.
I too have very similar issues like you and just found this but it is 3am and my story is so long and I didn’t want to miss this so hopefully will find my way back to this page to explain my story. I too cannot sleep body breaking down more and more everyday for I have no idea how I’m even still alive but fighting and realizing that I can’t fight this anymore. I needed help last December and never did get help but had many tests with many abnormalities and hope to share with u because u are not alone. Praying 🙏 for all that have ever felt anything close to this.🥲 I too have people and family that just ignore me and act like I’m making this all up and I’ve bee struggling to live with no help and everyone wants to tell me how to behave and act and not to even whimper because my pain is so extreme. I am told we all don’t feel well 😳
-
Like -
Helpful -
Hug
2 ReactionsI am also experiencing spasms in my calf muscles both legs throughout the day everyday. Restless legs at night.
Please don’t loose hope as others not experiencing this is just their ignorance talking. My friend is a nurse and suggested small spoonful of mustard for painful cramping muscles. Also 1-2 brazil nuts a day that contain selenium have helped me. I personally have tried things all natural as medications seem to trigger other symptoms in me🙃 You will find things that help your body and get through this!
Spasms can be alleviated or lessened by salt supplements containing Na,K,Mg. These are also helpful with neurological disorders. Some good ones are LMNT or Saltstix or lots of others on the market. Hydration is critical. Just mix one into water or any drink each day and it will really help with cramping.
-
Like -
Helpful -
Hug
4 Reactions