Can anyone help

[Georgie-girl]

I am so scared and hoping that you wonderful bunch here with so much knowledge can help me

After years of being treated for sjogrens syndrome, and PMR, it is now believed I don't have either. Bloods never really showed much and nothing was ever completely definitive, just probable, but recently, due to rashes headaches and blood vessel issues, Vasculitis became the front runner for a diagnosis.

However, after watching my mother die of autonomic failure (pseudo obstruction, sudden cardiac death) and having odd and random autonomic neuropathies myself, part of me couldn't help but think there was a connection, even more so when my daughter developed similar autonomic symptoms. Despite all this, sjogrens always seemed to remain the most likely diagnosis and even autonomic evaluation at a leading autonomic hospital 4 years ago turned up nothing but "anxiety".

The last couple of months though have been really tough for me and my daughter with strange symptoms and generally being quite ill yet with nothing showing on our blood tests.

Then this weekend I am rushed into hospital with an irregular and fluttering heart along with 3 day gastroparesis and vomiting. While there it is decided that my nasal and sinus problems are also more than likely autonomic along with my bladder issues, breathing, swallowing and visual problems, headaches, burning skin and ghastly sweats which have all worsened the last few weeks.

So what do they do about it?

An ecg to tell me that the irregular pattern is not AF or anything dangerous, a press on the tummy to tell me it's not hard enough to be worrying, and a check for pancreatitis. They then suggest I get my GP to refer me back to the autonomic unit I've previously been seen at and send me home.

I have emailed PALS at the autonomic hospital to ask if under the circumstances, ( as I am still technically under them having never been discharged, just forgotten,) could they please make me a follow up asap. I will also go to my GP practice tomorrow and have a tough time as my doctor is on holiday, but I will try to get a speedy re referral.

I am scared stiff. Is there anything else I can do?

Does anyone have any idea what this could be?

I have been reading through all the congenital, hereditary autonomic things over and over again and nothing really fits but it has to be something like this for me and my daughter to have similar symptoms. She is under cardio for irregular sinus rhythms and neurology for headaches and neuropathies, ent for dizziness, gastro for bowels, rheumatology for joint pains etc etc. So far just a diagnosis of UCTD and possible early RA.

I know it can take years for a definitive rheumy diagnosis but I'm 12years on and still nothing so I can't help but worry.

Do you think I am being silly and that it is probably just the autoimmune thing causing all these problems?

Thank you

[Momofson]

It’s very serious and can make you miserable and very sick when it is an autoimmune thing!

Have you had the autoimmune testing done by Mayo in Rochester, Minnesota? Any doctor can order this test from your local lab and have them send it to Mayo labs for testing.

Has anyone every mentioned Dysautonomia to you? Sounds like you have all the symptoms for it! Since it’s in the family, has anyone mentioned MENS to you? Possibly one of the autoimmune encephalitis? Sounds much more like Dysautonomia though. Look those up and see if your symptoms match. In the Mayo testing, they test for the Ganglionic Achr antibodies. That is an important test to have! This points in the direction of Dysautonomia, but only about 50% of people with Dysautonomia will test positive for it. So even if you don’t have those antibodies, it doesn’t mean that you don’t have it. It’s all fairly new medicine and many doctors aren’t even aware that Mayo offers these test. Read about the things I mention and print pappers out for your doctor.

[Georgie-girl in reply to Momofson]

Thank you so much Momofson, I do think I have Dysautonomia as I do as you say have a lot of the symptoms. I am not in the US so haven't had any tests done by Mayo but I have had lots of testing locally but nothing has shown up. I am in London UK. I have not heard of MENS but am off to look it up now. I once had someone mention MNGIE but it didnt fit as there was no brain involvement. Perhaps it is the same thing. Thank you very much for your input.

[Momofson in reply to Georgie-girl]

I believe that I have read that you dont have to be in the U.S. to get the test. They may even have the test available in your country by now. Please be checked for the autoimmune antibodies. There are other tests too for Dysauntomia. Let me know what your doctor says. You and your daughter have the symptoms and your mother died from autonomic problems too. That's what Dysauntomia is! Seems I remember reading that MENS is the more likely to run in families. I'll pray you find answers!

[Georgie-girl in reply to Momofson]

Thank you. I'm checking it as we speak.

[franklin1970]

Welcome 🙏 I feel for you, as I’m having heart palpitations and nausea headache and extreme dizziness and my doc never even bothered to send me for an ecg. I too am on a immunology drug still trying to understand that. I hope you get answers and a speedy referral. Autoimmune diseases are hard and I have a few. Like you you just got to stay positive and know you have support here and prayers and hugs 🤗 your way. My abdomen is wide open inside and I have to wear abdominal binder to hold my insides in as there’s only a thin layer of tissue protecting my internal organs and I have Neuropathy all over my body atrophy pills to prevent heart and kidney failure and have Lupus and just so much. So if you have any advice I could sure use it. God bless you amen 🙏

[Georgie-girl in reply to franklin1970]

Oh my goodness Franklin, what an awful lot you have to cope with. I feel for you I truly do. I just dont know how you manage with all of that, it must be so difficult and painful. Sadly, I dont think I have much to offer in the way of advice as Im sure you know lots more than me but I really hope you are not suffering too much and you find peace and comfort. God bless you too.

[franklin1970 in reply to Georgie-girl]

Amen 🙏 Georgi-girl! Thank you 😊 I am suffering my hands are burning and cramping and numb and can’t use my hands properly or hold a piece of silverware as I’m a right handed and it’s the worse hand being affected by my Neuropathy so bad and I don’t know what to do? My blood sugars have been normal for months now yet I still suffering with severe nerve pain and I stay positive and hope for the best.

[Jmt1995]

I've had issues similar to Sjodrens and with neuropathy as well. I've been told that neuropathy is really more of an effect to other underlying symptoms. I'm currently seeing a hollistic dr who has recommended to me that I go gluten free, dairy free, and eat mostly plant based, along with supplements. It could take a while to get better but alot of the time with autoimmune disease their is multiple problems occuring in the body and it may be hard to pinpoint. Healing yourself from the outside in, while using a therapy for stimulation of the nerves may help. Alot of autoimmune conditions begin with poor gut health and thyroid issues. I've been to numerous drs who weren't able to help me with my symptoms so I''m going to try this long term cause its the only think that makes sense. Goodluck to you.

[Georgie-girl]

Thanks jmt. I am a vegetarian so do eat a lot of plant based foods and since my recent 7 day gastroparesis I have now cut out most dairy. Let's see how it goes. Fingers crossed and thank you.