Autoimmune Diseases are relentless

My husband FDNY down there on 1 day of 9/11 1st diagnosed w encephalitis now had stiff persons plus aka PERM .has has 2 seixures , brain surgery and deals w this dusease receives ivig and rituxamaab .also has plasmapharesis while in hospital for brain suregery .its been a nightmare severe weakness esp in legs and overwhelming fatigue .he also had lung surgery after numerous bouts w pneumonia they found nodule .but for some reason WT C doesnt want to hear about it saying it has nithing to do w being down there my daughter did find on a 9/11 blog on facebook w at least 5 other peoe w same symptoms so frustraing .They dont have enough evidence to prove it was caused by being down there .not enough rats to do study on you poor guys /gals that didnt even thi k about it when you all went running down there ti help people his results were sent to mayo clinic .we deal w columbia pres in nyc and see autoimmune doc Dr weslsey maybe if she sees someone else w same symptoms .it will change
This whole thing is just crazy im hearing this from another person suffering ..have you had any brain scans / mris , cat scans .your truly Ellen ODonnell

I already see a Rheumatologist thank you for the feed back I was diagnosed with RA when I was a TEEN

I have MS in my family and I guess when I think about seeing a neurologist that maybe this has to do with something else it's hard to understand the BODY especially with autoimmune diseases so many things can trigger stuff to happen like inflammation and mental stuff for me I've been dealing with an OCD now since 2012 and it was triggered by events that happened in my life but then also now through my physical health not being well and it's STRANGE how it can be triggered by chronic pain and ones physical health then I'm doing this OCD and it's it's like a whole nother WORLD of horrible.... 😥

Im so sorry !!!! I dont know how you feel mentally but i see the changes in my husband and its like a different person not the man i marrued ..very hard to watch .feel helpless , and use less nothing i can do but leave it in Gods hands

So sorry for your heartache and troubles and pain your husband is going through and you too PLEASE stay STRONG it's not easy I know I'm right with YOU in my heart and prayers (((hugs)))

@ellenanne33 I think you left the right guy in charge....and prednisone does a job on your moods, the illness is frightening, and you wonder if it will ever be under control. Mentally it is tough, but also on the caregiver for sure.
At the time this had been going on with GCA, my husband is in his second year of dementia. One time when my daughter-in-law (my son's wife) was here helping...she told me I needed to be kinder to Larry. I'm no saint, but I found by really only expecting what he is capable of and showing appreciation (instead of wanting to pull my hair out)....I'm more relaxed.
Do either of you get alone time? I paint and escape. About a month ago my hubby brought home a busted chest of drawers he found on the side of the road...What? He has spend a small fortune on rehabing that dresser...brass knobs, gliding drawers....but it has changed his disposition entirely. I compliment him a lot. Is there anything you could get your husband interested it? And..can you get out for lunch or just out?
You are in a tough place as I am, but we cannot bring around change in a heartbeat. Will he have anyone come to see him? Not my husband...inanimate objects only. My heart💞

He barely gets around due to this illness .stiff persons plus ..aka Progressive encephelomyetis with rigidity monocloous ..i dont leave his side because he gets bad anxiety when im not around as i do too being he had 2 seizures on top of this and had to do cpr on him both times .thank you for your reply xo

You said it right by saying it is in Gods hand. I know the doctors do all that they can, but in the end God can. I suffer from Erythromyalgia and it is no fun, but I just have to trust my God. God bless you both

Yep !!! Trust Gods plan !! God Bless ...

I just got my 3rd rejection to my 3rd time application for Mayo Clinic. With the 2 former negated petitions, I thought it was because of the pandemic. But no, I just got rejected again. I was diagnosed with CIDP 2 1/2 years ago, but I serious doubt if CIDP is the right diagnosis or if there a second disease, because there are many symptoms that don't belong to CIDP. Besides my condition has gotten much worse, so why wouldn't they take me? I'm on Medicare, so I don't believe the insurance could be a problem.

@mafalda I am so sorry that Mayo has turned you down. Have they given any reason? Maybe you could try the Mayo Clinic Care Network. It is a group of hospitals throughout the country that follow Mayo’s protocols and philosophy. The link is:
https://mayoclinic.org/about-mayo-clinic/care-network/members
See if you can get some help