This is quite amazing.
This is quite amazing.
Truly inspirational. Necessity is the mother of invention.
I can totally relate to this guy’s journey!:
You won’t believe this, I was diagnosed with autonomic dysfunction last Wednesday due to small fibre neuropathy caused by the neurological manifestation of sjogren’s disease! I haven’t been on this site for a while and that was the first post I read. Spooky or what!
Good on him! I’m all for people taking charge of their own health and pursuing whatever it takes to get answers and a better life for themselves. There must have been a genetic link. And strange that it only kicked in from adulthood.
I am convinced the more i research this that VM is related to autoimmune conditions which cause systemic inflammation. The challenge with all autoimmune conditions is treatment can be tricky and waiting for the body to correct itself can take a long time.
What’s diagnosis like? Tests, symptoms analysis (like MAV?). Autoimmune I don’t know anything about apart from Thyroid is one. Are there many do you know recognised. VM/MAV has to have root cause somewhere surely. Helen
These same biomarkers are present in most auto-immune diseases.
What’s interesting is I asked to get my inflammatory markers checked soon after falling ill and because my head felt and sounded like it was on fire I was sure they were going to give me the bad news… but they said I was ‘fine, normal’. Wondering how comprehensive the tests actually are.
The inflammatory protein panel is wide and i did get tested but nothing actionable came out of it. (PS: Off topic) you can private message me also.
Diagnosis is a nightmare and takes literally years! The damage is caused by chronic inflammation, in my case it is systemic and includes every single part of me inside and out. The damage to the autonomic nerves which control functions like heart beat, BP, temperature control, pupil reactions, digestion, bowel and bladder function are the worst case scenario which is what has happened to me, along with all the other stuff. Other autoimmune diseases include MS, which sjogren’s is very similar to, RA, scleroderma, systemic lupus erythematosus and amiloidoses to name but a few. Sjogren’s has migraine as a component of the disease, as does balance issues due to small fibre neuropathy (nerve damage). It also affects the mucine producing glands rendering the eyes, mouth, digestive system and skin bone dry and unable to function normally. It is a shitty, progressive disease and I am now going to have a feeding tube fitted directly into my small intestine as my stomach has all but given up digesting food and I am skeletal. Add the spinning of VM to that little lot!!
Thanks for the detailed reply. Think I’ll bypass even trying that one in the UK. At that rate a snowflake stands a better chance in hell. I used to think medics would get all excited about something unusual, new, complex, complicated and want to involve sufferers in research if only for their own long-term chances of fame n fortune but have since proved the exact opposite. Every consultant I ever saw who told me I was a complicated case was reaching for his running shoes with the other hand bent on a record defyingly fast escape. (Btw Do you happen to know if cynicism is a MAV symptom or comes under the Autoimmune Spectrum? I guess I’ll have to do more research on that) Helen
That has been my experience also as every disease I have is rare, even the kidney tumour I had removed was so rare they haven’t a clue if, where or how it may spread!
Do they get excited and try to learn, hell no.
Very honest of them to say so at least. No it’s odd how, on many occasions, they don’t even seem to benefit from their own experiences of dealing with individual cases in front of them. Something that would seem practical, cheap and simple to us non scientific bods. Helen