Difficult case, several diagnosis, no solution yet

I have Mixed Connective Disease, a rare, overlap disease with some symptoms of Lupus. It is genetic, triggered the same, we think. There is a lab test for diagnosis, but some people just have the symptoms, not the full blown disease. Worth asking for that labwork. For the fibro piece, I find that a non-processed diet, low sugar, avoiding potatoes, tomatoes, dairy, wheat makes a difference. I have other food sensitivities that result in feeling worse the next day. For the RLS, I like leg edema massage, basic yoga cat/cow/child/cobra and other stretches from PT before bed. Daily walks help in the general sense, light massage, hydration, Magnesium citrate and D3 seem to help me, besides the basic meds I take. A good site is mctdfoundation.org.

You said you've had blood work, but do you know if your thyroid was checked? I would assume it has been given the symptoms you are experiencing, however before my thyroid disorder was diagnosed many of these same issues you are having were mine. By the time I saw a doctor who suspected this might be the cause I had progressed to the point that I would actually go from being dizzy to blacking out and momentarily losing eyesight. A thyroid that does not work can cause many, many issues throughout the body. This may not be what is causing your symptoms, but just thought it might be something you may want to have checked out further if your doctors haven't tested you previously.

@joey808 have you been seen by a neurologist? Funny how doctors write off anything they can’t figure out, as “anxiety” - especially if you have a history of anxiety or panic attacks! They look no further! 😬

@joey808 seems you live in Ontario - it takes several weeks, if not months, to get an appointment with a specialist and even longer during this pandemic since most doctors have cut back their patient load! But you’ve taken steps in the right direction!

I wish I can help you. I have three autoimmune diseases and have been working with this for many years. Getting on too the positive side: There should be more research in this field of medicine. Perhaps a new group of people who are dedicated and can get the funding needed. This is a hard trail to walk on but life can still be enjoyable at times and these times should be cherished. Love yourself and treat yourself with kindness. With all the best Peach

@joey808 you guessed right! I do live in Toronto, Ontario! 😀 Appointments with specialists take several weeks, if not months, even under normal circumstances but now during the pandemic it can be anyone’s guess! My regular physician cannot give me an appointment sooner than a week or more away under normal circumstances either, and now has cut her patient load during the pandemic too.

....been doing a quick read of all comments and feel like printing out and highlighting many of the conditions i have had, or have.....or might have: thing is no fam. dr. here and cant travel... I am getting more issues by the week or month and this started many years ago with fibro diagnosis, but then concentrated on Norflox antibiotic giving me permanent peripheral neuropathy; then on to Glaucoma diagnosis and too many antibiotics and C.Diff; dr. switching around meds and then physical and mental breakdown of sorts.
Spent most of my days, well all of my days in or on my bed for over two years... now tinnitus is 24/7 and painful ears; had 3 short attacks of "more than dizziness," cant explain, crawled into spouse's bedroom for help, with no control over eyes .. notes from emerge make it look like a "little spell" but it was horrendous... (Meniers? Vertigo? no one knows) have had half thyroid out, cancer 1985, migraines since age 12, ibs-d, fecal incontinence, fatigue, strep throat, and the list, like many others on here, goes on and on. CT scan again next week but last time 2020 just said increase in "white matter" not explained to me. Pressure in ears/noise is high right now, its hard to explain to family members who are tired of listening to me. Temp in C. was 35.9 just now, never seen it that low.... anything scares me now. At 77 and reading what others have had to go through, not sure I can. However, best wishes to all for a diagnosis and good prognosis... you are to be commended for keeping going through all that you have. J.
p.s. I too am in Northern Ontario and takes months to see specialist and then they are often not that interested! Hugs

Interesting note you give us. Almost everything you mention, except the specific diagnoses, I can relate to because "been there done that". But with the help of some good and some not-so-good labs and doctors and researchers, I have a multi-dimensional diagnosis that seems to be straight. To make it more interesting, I was started down this diagnosis path by a brief article in the Portland Oregonian about 6 years ago. It mentioned a strange disease which that writer (from Johns Hopkins, no less) had heard of, called Amyloidosis, and there were even further steps down the ladder from Cancer to Multiple Myeloma to Amyloidosis, and then to Gelsolin (GSN or AGel). So I started digging. Made a trip to Mayo which only ate up my life savings. But it did give me some clues. I started contacting genetic researchers around the country, and after another 5 years I believe I can prove I have not only Gelsolin, but also Fukatin Limb Girdle Muscular Dystrophy , and a bunch of other stuff, all related to these two. Sequencing.Com says I have over 1500 genes, syndromes, variants, alleles, etc., related to each other under the name Gelsolin, AKA Finnish Amyloidosis, or Meretoja's. I also have about 1600 of these related to each other under Fukatin Limb Girdle Muscular Dystrophy. And this FKTN seems to be directly related to GSN. I have since found about 10 persons who have been tested positive for FKTN, and then tested positive for GSN. I believe a positive DNA test for FKTN from a place like Ambrygen.com or Sequencing.com is also a positive DNA test for GSN. The two are tied together somehow, I am convinced. I got the first hint of this from NIH literature. Anyhow, I suggest you get a full 100% whole genome analysis from one of the better firms such as Nebula or Sequencing or Ambrygen or such, and use Genome Explorer to search for genes, syndromes, etc., for GSN, then for FKTN. I would put my whole lists of genes on here, but there are too many of them. The GSN tears into and disrupts the ACTIN web around the cells, and allow other powers to sneak in. FKTN seems to use this opening to rip into nerve and muscle cells to disrupt their function. There are many other DNA powers that sneak in this way. Ankylosing spondylitis, cardiomyopathy, TSE, RYR1, RYR2, RYR3, PA4, LQT1,RTC1, and such. I have several thousand of these buggers. Every tissue, fluid and electrical pulse in my whole body has been affected. So you are not alone.

July 2021 I read most of very first post not all as not well agaon and must admit glimpsed at many of the many responses.
Re the first I had and have the same except not constipation. I have many of those issues and some different and now at 77 plus and the last 3 years the worst, just not sure I can take any more.
Cancer, fybro, migraines with aura and now memory fog after them (which was my first search today)...migraine with aura since a child with vomiting and head pain now mostly ocular with many ending in brain fog; hypothyroid, right side out, narrow angle glaucoma, tmj, peripheral neuropathy, internal tremors, ibs=d or whatever it really is for many years ... radiated bladder; had c.diff after too many antibiotics for utis in 2018, after over 100 vancomycin permanent fecal incontinnce and lots of bowel pain before that and since; diet bland: tinnitus 24/7 last 18 months or so, just occasional before, internal ear PAIN pressure, fullness, started after 2 bad sore throats never had before now I think I have eustachian tube disfunction but where I live my dog gets better treatment from vet than the ENT who has no interest as cant fix... the pain in ears and around area is for hours every day; extreme fatigue spend most of time on bed rarely leave the house last 3 yrs, and it goes on...
I believe every word of former posters.... add to mine some depression and definite anxiety and life could be worse but it is not the life i used to live or want to live, and it is now affecting my small family. I dont cook, clean, rarely visit, my ipad is my life to the outside world. Goiter on right half thyroid both out 2008, had laser to eyes for vitreous and Iridotomy and use horrible drops like everyone else and these glaucoma and dry eye drops do make it into the body.

Thing is since diagnozed 2018 with narrow angles, it prevented me from taking MANY medications including over the counter for pain etc., such as steroids, as raise eye pressure and I am still worried about that and could be on stronger meds but choose sight.
It started my downhill roll and I haven't really recovered.
I did get bitten in veg. garden around 2012 and very red swollen arm from elbow down and no bullseye rash but could see where some type of bite had been made I thought a spider... could it have been Lyme? We had deer all around lived near the lake, i have photo but colour off and looks overly red, or was it that red, didnt go to dr.

Only reason again listing all this is not in sympathy with others and for comparison, the fatigue is just as the young lady in the first comment.... plus whole body feels out of wack. I feel for everyone with illness especially continuing illnesses which are life changing... add old age and being too sick to even travel overseas to family's funerals etc. over the years and they wonder why I am not coping and really still grieving.

I have had no family dr since fall 2019, GoodDrs clinic in ON. Canada has done their best via video, nurse at clinic and phone calls but just too much, thats not what they are for. Theymade referral to ent as as I cant fravel had to wait a YEAR for a phone call and even then he was moaning about his problems during covid and didnt ask about my ear pain et. Unbelievable but truee.

Take care everyone and lets hope in the future more can be done for people with multiple issues that make dealing with constant pain, discomfort and not living life as we might, especially when tests show nothing and we almost remain labelled as complainers or ???? fill in the gap. Yet talk of my wanting M.A.I.D. in Canada bring comments like; oh you will get better, take this med, take that, ..... meds that will make things worse..... enough is enough but brave are those who continue with no complaint! I even get tired of listening to myself!
It's hard to feel the love and compassion from family gradually fading with each new day, with each new complaints of pain, with each drive to emerge or medical appointment.....so very SAD for everyone. And to think years ago I would complain about the flu... bring it on, I will exchange for all the rest! 💙 J.

I have come to the conclusion that anyone who has even one or two MD or ER visits without legitimate results should get a Full Genome Analysis from one of the better Genetic Testing Labs. There are several. Sequencing.com, Dante. Mayo is related to one or more. Let me give you an example. 18 months ago I developed red and gray-black patches over my forehead, which spread to my entire face. It hurt like a hornet making a nest in one's ear. Anyway, the lab at the hospital said I had shingles. The doc said I had shingles. However, they could not prove it because they could not find any Zoster in me, as I have never had Chicken pox. So I searched for the answer. In my genetic work, I found I have at least a score of CALR (Calreticulum) versions, which cause just such a thing. I also have JAK2, one version, which can be part of it. The disease is also called "Clarkson's Disease", or "Systemic Capillary Leakage Syndrome", or "Exploding Capillary Syndrome". I found from experience that the best treatment is an OTC salve called "Gold Bond Psoriatic Creme with Aspirin". It not only killed the pain almost instantly, but eventually faded out the red and gray-black areas on my face. Now it is in my hair, back, legs, and I may have to shave my head to put it on, unless I can find it in a thinner liquid form. So you see, without the genetic work, I would probably be dead by now, not just from my exploding capillaries, but from my GSN, FKTN, cardiomyopathy, encephalopathy, various fibroses, and other stuff. A $500-$600 workup is much less expensive than death.