Multiple Autoimmune Diseases & Post Covid

Most neurological injuries from the vaccines seem to peak around 8 months and then slowly improve. I'm much better now at 29 months and continue to slowly improve. That makes it easier to cope. In the beginning, no one knew if we would recover. Hopefully, you will get better, too. Has anyone checked your vitamin B12 level? B12 is important for nerve healing. You likely lost considerable nutrients due to the severe diarrhea. If your level is low, you could receive B12 by injection to bypass the malabsorption. Your primary doctor or neurologist could place the order for the blood test without meeting with you first.

Hi Philip. I just joined this site a minute ago and yours is the first thing I've read.
I'm sorry you had that experience. Some doctors don't realize that the size of their ego matters. In my case it is the neurologist who have outgrown their britches. I've seen many over the last 20 years and I've never been so categorically dismissed by any other group of people. After my last attempt to meet one ended with me crying in my car for over an hour before I felt well enough to drive home, I have taken a break from doctors. That was about 18 months ago.
So I've been out of my meds for about 6 months now and the SSA wants to schedule a disability progress review and I've moved to another state...so I've managed to get backed into a corner due to the anxiety I get from having to rely on the mercy of a medical professional who would probably rather be my coroner.
The insurance regards neuros as MS Specialists but almost all that I have been referred to specialized in geriatric sleep disorders and their knowledge of current Multiple Sclerosis treatments couldn't fill a thimble.
I hope you find a doctor that respects you and respects your wishes regarding treatment over his own personal prejudices.
Sometimes, no matter how educated your doctor is, the patient actually has a better understanding of what works for themselves. Especially when they live with a chronic condition. Some doctors will lie straight to your face instead of admitting that they won't prescribe you something because they think you look like you will abuse it. Better to know in the very beginning that they think you are unworthy of their time.
Really they have no business treating patients this way. If they don't respect me as a person then respect my diagnosis and deny me nothing that is routinely used and indicated for my disease.
And my first contribution on this site probably violated something so it may also be my last.
Good luck to you with your search.
Laurie

Dear All,

I posted somewhere else and naturally can’t find it. I joined a Facebook group dedicated to long term (years) side effects from the vaccines only to become more depressed by the hecklers. Found many in my shoes, but deleted the post. I was an athlete pre vaccines. I’m not an anti vaxxer. I never imagined what would happen to me or I obviously wouldn’t have gotten vaccinated. Stanford lagged for a full year as inflammation spread through my body. My primary ran labs after seeing me so immobile and grossly underweight. Very high CCP and RA positive. I have tried about 5 medications for RA over the past year +. All made me very sick and didn’t help. At this point we don’t even know if it is RA. It is primarily in my large joints, shoulders, spine wrists, hips, knees, ankles. I was seen a week ago due to increased shoulder inflammation (one shoulder) and was told that it looks like frozen shoulder. I’m in constant pain despite heavy duty pain meds. Muscle wasting. Sleep is WAY off. When I was wide awake in the middle of the night, I found something called long vax. I’d always said vaccine injury. Both make sense. I always feel like I need to say that I am not seeking compensation. I have had to give up every aspect of my life. I’m holding on to my financial business only because I can work from home and am not required to meet with clients. I can work in the middle of the night and sleep when I can sleep. Anyone else in a similar situation? After researching last night, I think I have been seeing the wrong type of doctors. I’m going on 2.5 years. Does anyone know of physicians that are studying long covid, long vax and covid injuries? I’m going to search my area (San Francisco Bay Area.). I’m not sure if it’s relevant, but I had zero antibodies post my second vaccine. This perplexed my doctor. I have never been this depressed before. I’m in treatment for depression because I feel so hopeless. I’m on an anti inflammatory diet and have been since December. Even the foods that I am able to eat have changed. I’m scared.

Dear All,

I posted somewhere else and naturally can’t find it. I joined a Facebook group dedicated to long term (years) side effects from the vaccines only to become more depressed by the hecklers. Found many in my shoes, but deleted the post. I was an athlete pre vaccines. I’m not an anti vaxxer. I never imagined what would happen to me or I obviously wouldn’t have gotten vaccinated. Stanford lagged for a full year as inflammation spread through my body. My primary ran labs after seeing me so immobile and grossly underweight. Very high CCP and RA positive. I have tried about 5 medications for RA over the past year +. All made me very sick and didn’t help. At this point we don’t even know if it is RA. It is primarily in my large joints, shoulders, spine wrists, hips, knees, ankles. I was seen a week ago due to increased shoulder inflammation (one shoulder) and was told that it looks like frozen shoulder. I’m in constant pain despite heavy duty pain meds. Muscle wasting. Sleep is WAY off. When I was wide awake in the middle of the night, I found something called long vax. I’d always said vaccine injury. Both make sense. I always feel like I need to say that I am not seeking compensation. I have had to give up every aspect of my life. I’m holding on to my financial business only because I can work from home and am not required to meet with clients. I can work in the middle of the night and sleep when I can sleep. Anyone else in a similar situation? After researching last night, I think I have been seeing the wrong type of doctors. I’m going on 2.5 years. Does anyone know of physicians that are studying long covid, long vax and covid injuries? I’m going to search my area (San Francisco Bay Area.). I’m not sure if it’s relevant, but I had zero antibodies post my second vaccine. This perplexed my doctor. I have never been this depressed before. I’m in treatment for depression because I feel so hopeless. I’m on an anti inflammatory diet and have been since December. Even the foods that I am able to eat have changed. I’m scared.

I have been in a similar situation and know how terribly frustrating and depressing this can be. I do have some suggestions that may prove helpful. To confirm you have RA, xrays and MRI help in diagnosis IF you have joint erosions. Your worst and longest affected joints should be xrayed first. If erosions show up MRI not needed. If no erosions seen, then an MRI of worst joint should be done.
For the muscle wasting, skeletal muscle enzymes in the blood can be checked to rule out autoimmune myositis. CK, aldolase, ALT, AST and LDH are enzymes elevated in myositis. There is then a myositis antibody panel if those enzymes are elevated. Myositis causes muscle weakness as well as atrophy. Atrophy can also occur just from immobility caused by pain and stiffness, fatigue associated with RA.
Lastly the lack of antibody response to your vaccine could indicate an immune deficiency. This is paradoxically common in autoimmune disorders that one has excess antibodies directed at your own tissues but a lack of antibodies directed At infectious agents such as bacteria, viruses fungi. This can be measured by a blood test of immunoglobulins (antibodies), IGG ,IGA, IGM. These are different categories of antibodies. If deficient one would be prone to infections and not make sufficient antibodies to vaccines. These aren’t typical blood tests done routinely. You definitely need to be under the care of a rheumatologist. Antidepressants may help you as chronic pain depletes the neurotransmitters in the brain that affect mood. If an antidepressant raises your neurotransmitter levels, then the situational problems of chronic illness may be easier to cope with. A therapist or life coach would be helpful too, as we autoimmune sufferers need someone to talk to. I wish you better luck in finding an RA treatment that works well. I’m in the same boat with lupus and RA and no response to many meds I have tried.

Really appreciate your response! I have had X-rays and MRIs from the brain down. I was initially told that nothing was seen, but always had a trusted physician review. My true feeling (and I am not talking about conspiracy) is that Stanford told me this was all in my head for a year because they didn’t want to report it. My primary, and then surgeon (from a fractured ankle 7 years ago) reviewed my imaging and said “get out of here for this, you are full of inflammation!” I have seen several rheumatologists who have thrown their hands up in the air. They seem to want everything to be text book and this just isn’t the case. I will ask for these labs. Once my CCP and RA tests were done, it was finally acknowledged that I had a problem. I don’t feel it is RA. I have been pushing myself until about a month ago. I had to scale back, but my muscles were deteriorating even with pushing through. I’m not disputing what you are sharing at all - just letting you know what has been happening. Thank you for your response. I’m actually going to read it again later. I’m also going to upload some pictures later. Strange things. I woke up one morning with a knee the size of a melon. My non surgical ankle one morning the size of a baseball. It’s so odd to have things pop up out of nowhere. I’m sorry that you are in a similar situation. I actually just got a couple of referrals for therapists today. It is too depressing for me to manage on my own. Again, thank you. Since this happened post vaccines, I’m looking for a more forward thinking specialist. I’ve seen the one size fits all and they get frustrated with me because I’m not responding to their treatment. I will share anything that I learn along the way. Best to you!! How long have you been enduring this?

Really appreciate your response! I have had X-rays and MRIs from the brain down. I was initially told that nothing was seen, but always had a trusted physician review. My true feeling (and I am not talking about conspiracy) is that Stanford told me this was all in my head for a year because they didn’t want to report it. My primary, and then surgeon (from a fractured ankle 7 years ago) reviewed my imaging and said “get out of here for this, you are full of inflammation!” I have seen several rheumatologists who have thrown their hands up in the air. They seem to want everything to be text book and this just isn’t the case. I will ask for these labs. Once my CCP and RA tests were done, it was finally acknowledged that I had a problem. I don’t feel it is RA. I have been pushing myself until about a month ago. I had to scale back, but my muscles were deteriorating even with pushing through. I’m not disputing what you are sharing at all - just letting you know what has been happening. Thank you for your response. I’m actually going to read it again later. I’m also going to upload some pictures later. Strange things. I woke up one morning with a knee the size of a melon. My non surgical ankle one morning the size of a baseball. It’s so odd to have things pop up out of nowhere. I’m sorry that you are in a similar situation. I actually just got a couple of referrals for therapists today. It is too depressing for me to manage on my own. Again, thank you. Since this happened post vaccines, I’m looking for a more forward thinking specialist. I’ve seen the one size fits all and they get frustrated with me because I’m not responding to their treatment. I will share anything that I learn along the way. Best to you!! How long have you been enduring this?

Really appreciate your response! I have had X-rays and MRIs from the brain down. I was initially told that nothing was seen, but always had a trusted physician review. My true feeling (and I am not talking about conspiracy) is that Stanford told me this was all in my head for a year because they didn’t want to report it. My primary, and then surgeon (from a fractured ankle 7 years ago) reviewed my imaging and said “get out of here for this, you are full of inflammation!” I have seen several rheumatologists who have thrown their hands up in the air. They seem to want everything to be text book and this just isn’t the case. I will ask for these labs. Once my CCP and RA tests were done, it was finally acknowledged that I had a problem. I don’t feel it is RA. I have been pushing myself until about a month ago. I had to scale back, but my muscles were deteriorating even with pushing through. I’m not disputing what you are sharing at all - just letting you know what has been happening. Thank you for your response. I’m actually going to read it again later. I’m also going to upload some pictures later. Strange things. I woke up one morning with a knee the size of a melon. My non surgical ankle one morning the size of a baseball. It’s so odd to have things pop up out of nowhere. I’m sorry that you are in a similar situation. I actually just got a couple of referrals for therapists today. It is too depressing for me to manage on my own. Again, thank you. Since this happened post vaccines, I’m looking for a more forward thinking specialist. I’ve seen the one size fits all and they get frustrated with me because I’m not responding to their treatment. I will share anything that I learn along the way. Best to you!! How long have you been enduring this?