Anyone Treated As If Its Autoimmune?

[lissy]

The more I have dealt with this illness and read all the posts, I honestly wonder if this is just a autoimmune disease.

With the flares, remissions, triggers, basically feeling that our body is fighting against itself. Has anyone been treated with steroids?Not florneif.

I have a family history of autoimmune disease

(Mother has blood clotting disease) I think APS

Her one sister had MS

Her other sister has RA

Her grandfather had MS

My mother and her sister with RA also have tumors going within different areas in their bodies non-cancerous.

Thats all on my mothers side.

My fathers side is all kinds of health issues

But on his side that pertains to dys.

I have a great aunt that has vasovagal syncopes

and her son has it also.

Sorry I always seem to get these compulsive searches going when I am feeling my worse I guess its my way to keep fighting and stay mentally strong:(

[anaphylaxing]

I just had a similar thought. I'm early in my pre official diagnosis phase, but have out of whack mast cells, nerves, and now heart rate etc. I was put on steroids which improved my numbness/tingling, but it was on steroids that I developed heart rate/POTS issues so I wouldn't say they're helping that....now that I'm tapering the steroids the numbness is getting worse making me think it was inflammatory/possibly autoimmune.

There's so much medicine doesn't know and has yet to learn. It's frightening!

[lgtaylor100]

On the same subject I would really like to know who has had the Mayo autoimmune dysautonomia panel and has tested positive. Following a positive test what kind of treatment did you receive? I've been fighting to get the panel but there really is no point if there isn't a treatment for autoimmune dysautonomia.

Lynne.

[Maiysa]

Hi Lynne,

I did have the panel ordered by Mayo, but did not test positive. But was diagnosed as autoimmune. I was told that there isn't a test for every autoimmune disorder out there and it can be diagnosed on symptoms. I just went to the local neurologist who just received the information from Mayo and she said she totally agrees. I do have a lot of the autoimmune symptoms. But I can't take steroids because it will flare up the fungal infection from the valley fever. So I was put on aleve for inflammation-which I haven't been brave enough to take.(I react to all meds) But children's ibuprofen helps with my inflammation too. I also do Healing Yoga for Aches and Pains. It's yoga for whimps like me. And I found if I cut out gluten and eat healthier I can feel better. But it's so hard!!!! And every day I drink an anti inflammatory fruit vege blend smoothie with vitamin E and ginger. I eat a lot of anti inflammatory foods-salmon etc. You can look for the diet on line. Just put in anti inflammatory foods or best diet for Lupus or rheumatoid. I'm not cured, but it does help me to manage it. But somedays....not much I can do. Sorry I can't help you more. Good health to you!

[HopeSprings]

It would also explain our very varied triggers, as well as the fact that more of us are women. I was on steroids (both injected and oral) briefly before my POTS diagnosis and it DID help somewhat with the eye focus problems. Unfortunately, shortly after this my heart symptoms started and I became afraid of the steroids (not knowing WHAT caused the POTS symptoms) so I decided not to pursue this treatment option. But I agree - autoimmune makes sense.

[kluesyk]

I will get a huge relief of problems if I receive a steriod shot in my hip....it is like it is the fix for me....for 2-3wks. Dr's are still trying to figure out why....

I had 20 yrs ago a mixed connective tissue disorder(autoimmune) that went into remission after 3 years(ANA is now neg), so autoimmune is VERY likely for me.

The only problem is now that the steriods will even lower my immune system more, which is a new development for me....very low CD4 and CD8"s(killer T cells that fight infection).........so frustrating. As of now, I am taking something called an IV Myers Cocktail to try and build up my immune system ( of vit c, b vit, ect, and 1 g of magnesium as I am low), and started on anti-viral acyclovair(I have had shingles 3x last year and tried to come back recently) and azithromycin antibiotic and told me to stay away from sick people and large crowds. I think this last round of bad news has got me the most....staying away from my grandsons is hard.

Since 2005, I have had thyroid failure, adrenal failure,autonomic problems(h-pots), severe muscle pain and weakness (getting where I can't walk very far), and now an immune system in the tank. Something sure is taking me down.....

[Tarastomsgirl]

I was treated with steroids. Worst decision ever. I infact do have an autoimmune disease (they can't figure out which one tho I'm going to Mayo in 6 weeks) but after 7 years of just awefulness and dizziness so bad my husband thought I was having a stroke I couldn't even communicate I was put on predinisone. It was a trial run for 5 days. I felt amazing. I could have run the Boston Marathon twice while I was on it. All my dizzines , weakness, tremors brain fog etc went away. Even the sores in my mouth and fingers. After 5 days I stopped like they said. Within 1 day I was in the ER in adrenal faliure. I spent the next 4 months coming off of 10 mg of prednisone. I had to wean off 1 mg every 2 weeks and my symptoms came back 10 times worse and I haven't been the same since. I legitimetly thought I was gonna die, infact so did my husband. I was sweating , shaking , grey, confused and physically sick like never before. I was then and still under the care of a Rhumy , Endocrinologist, Neurologist , GP and Cardi after that little medication vacation.

[Katybug]

Wow lissy...I have been having this thought a lot recently. I feel like we all have some disease that they haven't named yet and that it's gonna end up being autoimmune. I just feel like, "how can this many of us have the same symptoms, complaints, weirdisms, and not have something they just haven't found/named yet?" I feel like a philosophy student, "If it the disease doesn't have a name, does it really exist?" I say YES!

[Kate2011]

It would also explain our very varied triggers, as well as the fact that more of us are women. I was on steroids (both injected and oral) briefly before my POTS diagnosis and it DID help somewhat with the eye focus problems. Unfortunately, shortly after this my heart symptoms started and I became afraid of the steroids (not knowing WHAT caused the POTS symptoms) so I decided not to pursue this treatment option. But I agree - autoimmune makes sense.

Quick question. Sorry to derail the post for a minute. By eye focus problems do you mean double vision? I have Diplopia (sp?) and I've never known if thats a typical Dysautonomia issue.

[Chaos]

Back in May I had a 6 day migraine and my neuro said I could try a 6 day burst of prednisone to try to stop it. Not only did it stop the headache but it was a miracle drug in that it reversed almost all of my other symptoms, literally overnight.

Fast forward to this fall where I've been on a downward slide since Labor day and have been really bad the last couple of weeks. Last week the neuro said I could try the 6 day burst again to see if it would help. I do think it helped but it certainly wasn't the overnight miracle of the time before. It did help my joint pain a lot which had been quite flared up, helped with my allergies etc. So maybe it helped by decreasing some of the factors that might be moving me closer to the threshold that serves as the trigger for ALL my symptoms to flare again. Maybe it didn't help as dramatically because I'd been pretty symptomatic for a longer time than I was back in May. Not sure, but disappointed that it didn't turn things around as well this time.

[Tarastomsgirl]

Back in May I had a 6 day migraine and my neuro said I could try a 6 day burst of prednisone to try to stop it. Not only did it stop the headache but it was a miracle drug in that it reversed almost all of my other symptoms, literally overnight.

Fast forward to this fall where I've been on a downward slide since Labor day and have been really bad the last couple of weeks. Last week the neuro said I could try the 6 day burst again to see if it would help. I do think it helped but it certainly wasn't the overnight miracle of the time before. It did help my joint pain a lot which had been quite flared up, helped with my allergies etc. So maybe it helped by decreasing some of the factors that might be moving me closer to the threshold that serves as the trigger for ALL my symptoms to flare again. Maybe it didn't help as dramatically because I'd been pretty symptomatic for a longer time than I was back in May. Not sure, but disappointed that it didn't turn things around as well this time.

Steriods are considered "miracle drugs" because they help just about anything. Cancer patients are on ridiculous amounts to make them feel good. My friend had lymphoma and I swear he was better than I was half the time . Downside he never sat down or slept but my god could he eat. Steroids are also very dangerous because they hide the issue at hand. They suppress your system I have scars on my legs from getting a cut that turned into a pinky fingernail sized hole in my leg because my immune system was so depressed from the steroids. Doctors should avoid them at all costs but hand them out like candy. They can kill you easily(they almost did with me)

[HopeSprings]

Tarastomsgirl is making me wonder even more if the steroids could have triggered something - I didn't have the heart symptoms before being on them. I guess I'll never know.

Katie - the ENT tried me on them for presumed inner ear/eustachian tube inflammation. I don't have double vision - it's a feeling of not being able to focus them and not being able to "see straight." For whatever reason, the steroids had the unexpected (wonderful) result of helping with this. It literally felt like the windows had been washed and I could through them again.

[Annaliese]

Im 100 percent convinced my dys is from autoimmune disease. I got mine through pregnancy and c section. Scientists are currently investigating whether there is a role of microchimerism (when fetal cells pass to the mother and stay there for decdes) in autoimmune disease. Prior to pregnancy i did have IBS which i believe in my case has an autoimmne origin. My mother has autoimmne diabetes and my father has asthma and IBS issues. Ive been watching a lot of lectures on the immmune response by dr najeeb on youtube. Very intetesting. I think people who have innate problems with their immune system may go on to result in autoimmunity later in life. This fits with my story: My mother had recently told me that i was always twice as sick for twice as long as my siblings when i was a child. As for treatments, im trying to research that one at the mo.

[icesktr189]

I don't have double vision - it's a feeling of not being able to focus them and not being able to "see straight." - Naomi, I have this exact problem and for me it was 100 percent inflammation in my sinuses and ears. Of course low bp exaggerate it, but it was from allergies. I can tell because it will less a whole lot when I am in doors a lot and when its not allergy season. Its terrible. I will be talking to someone and I cant look at them for more than a couple seconds. Or when I go to read something, I cant focus on what I am reading. I have never had double vision, just this weird thing with my eyes. My right eye is the worst. I swear it wont focus to save my life. This is definitely my worst symptom because I cant drive because of it...ughhhh

[HopeSprings]

Dani - I think my "eye" problems stem from my ears too. If you're sure it's from allergies, did you try allergy medicine to see if it helps the symptom?

[icesktr189]

Yes it helps but mine are so severe and common (grass and hay) and in AZ, I was told its a year round thing here. I am on flonase, patanase, and Zyrtec and it helps (before I was constantly spinning) but no way under control.

I can tell I have a lot of pressure because at night I am in pain from it . My ears feel very clogged and my sinuses too. I went on vacation to California last year and while I was there I had NO problems whatsoever. It was awesome. Then I came back and so did the problem.... so my only option is moving haha

[icesktr189]

Oh and lord help me if I take my daughter to the park... I suffer for days. However, I dont have a runny nose, just post nasal drip. Mine is mostly allergic rhinitus. I had allergy testing done from my ENT... have you tried that one yet??

[HopeSprings]

I have been to more ENTs than I can count. I test negative for all allergies. I do believe my ears are chronically inflamed, but have no idea why. The steroid injections I had went into my ears and like I said, I could "see" so much clearer after. It was an unexpected wonderful result. However, within a month of those injections my POTS symptoms started, so I got scared and stopped. If it hadn't been for that, I would have continued with the treatment. My ears drive me crazy on a daily basis - I wish there was some way to fix them.