HOTLIKEFIRE

37 minutes ago, CallieAndToby22 said:

I have a very rare blood cancer and right now my oncologist is saying no where-as my PCP was saying yes. I say speak to your oncologist. They keep telling me it's my decision but everybody is reacting to it differently, one of my completely healthy friends got a shot and ended up bedridden for weeks so at that point I'm just going to wait till I see the new oncologist at Mayo Clinic but that's not till July. I'm assuming you have dysautonomia too? After 3 months of a cancer treatment my Dysautonomia got 10,000x's worse and nobody knows what happened. Just thought I'd ask if you had autonomic dysfunction before or after and if immunosuppression treatment made it worse? Thanks in advance. 

I haven’t received any treatment as my blood numbers are good and have an officially been diagnosed with a auto immune because they don’t know which one it is yet and I can’t get an appointment until September.Both my primary and oncologist said the choice is mine they’re not sure which way to go unfortunately

4 hours ago, KiminOrlando said:

My Rheumatologist, Immunologist and Oncologist (Hematologist) all recommended the shot for me. They specifically recommended the Moderna shot for me. It is unfortunate that your doctors won't make a recommendation for you. 

Yeah every single doctor I asked said it’s on me kind of frustrating but I understand they probably don’t know much more then us as this is all pretty new and not enough studies have come out

I’ve been suffering for months not officially diagnosed with an auto immune disease yet but my primary is convinced it is ... so as you can imagine my low grade fevers and all the other unpleasant daily symptoms are bad enough but my question is , are there other people who have got the shot ,even with these daily symtoms  ?????
just wondering if it’s safe , Because out of all the doctors I’ve spoken to nobody will give me a yes or no answer they say it’s your choice when I ask if I should get the vaccine ....

I feel like I really need this vaccine as I also have leukemia....

19 hours ago, Pistol said:

@HOTLIKEFIRE - have you been checked for Viral infection like Lymes disease etc?

My test came back positive ANA , they tested for lime and others and was negative however my doc is convinced it’s an auto immune ,in my area I was referred to a neurologist and rheumatologist and I won’t be able to be seen until September, so I must sit and suffer like it appears so many on this forum have.

I have constant low grade fever , trouble sleeping, trouble eating,sore throat,lost smell and taste twice ,always very tired and weak ,nauseous,blurry vision,headaches , etc...

On top of all that was diagnosed with leukemia this year also, however my blood numbers are good and my oncologist is positive this has nothing to do with my cancer. 
 

Everyday is miserable just praying for the day I get some relief .....

On 2/1/2019 at 2:20 PM, plaster89 said:

Hi everyone!

I have been diagnosed with POTS a couple of years ago and also have low-grade fevers (between 37.0-37.6C) all the time. This is a pretty uncommon symptom in POTS as far as I know. I have found out an article presenting a case of a POTS patient with the same issue and concluding the immune mechanism is at fault. Furthermore, and perhaps most importantly, this patient has been treatment by "steroid pulse therapy" (I have no idea what it is) and the symptoms abated. I have also underwent an immune disease almost a decade ago that has been cured but since then I developed POTS symptoms and low grade fever.

https://www.autonomicneuroscience.com/article/S1566-0702(07)00411-0/abstract

Do you have similar problems? What do you think?

 

Sounds exactly like my symptoms although I havent been diagnosed yet, non stop fever , weak tired , nausea, etc, and some days disappears at bed time have no idea why and most of my days the degree of my symptoms are different. Would love to know any treatment options especially without diagnosis 

So glad I found this forum ! 
it’s shocking to see so many people suffering for years with auto immune diseases without diagnosis. 
Which is where I’m at unfortunately, it’s only been several months however feels like years !

I was diagnosed with leukemia last June when I lost smell and taste figured it was covid only to be devastated with the big C word.

Now this !(btw my symptoms are not leukemia related as my blood levels are very good and I am assured what I have is unrelated....

My symtoms in case any can relate , daily fever between 99.5.-100.5,weak, tired,nausea,loss of appetite,bowel movements,blurry vision,smell and taste come and go,headaches,skin very sensitive ,trouble sleeping,etc...

I have had blood tests ,X-rays,cat scans,mri,echocardiogram,ultrasound,and an endoscopy . 

No answers 

I’m guessing my next move should involve finding a good rheumatologist?Unfortunately Everywhere is backed up until September...

Any suggestions would be appreciated I am sick of suffering daily,pumping acetaminophen non stop and recently looked into medical marijuana. Idk what else to do .
Appreciate any advice as I’m literally going out of my mind idk how y’all have done this for so long but I don’t know how much more I can’t take ...