@David49 My thoughts and prayers are with you and yours! Here’s hoping your able to resume normal activities in the not-too-distant future!
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Gosh, good luck at Mayo’s, Dave. Jerking Stiff Person Syndrome… I thought you were kidding at first. What a name! I read the description and it sounds awful, also fits the scary symptoms you spoke of before. Glad if they have meds to mostly control it.
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Yeah, if I do turn out to have this, I will use my PhD and what time I have to lobby for coming up with a nice, classical-sounding name. If I return to work, how am I supposed to explain to colleagues at conferences that my constant, involuntary movements are due to Jerking Stiff Person Syndrome. I’ll be laughed out of the room 
Thank you for the kind thoughts. If it is SPS, I will hopefully be one of those who can be treated with meds successfully. It is so exceedingly, ridiculously rare, however, that all bets are off! Let’s hope the geniuses in Minnesota can sort me out 
My greek is terrible, so best I can come up with is latin(ate):
Myoclonic Hominis Rigoris Syndrome
Not sure that’s constructed properly, but it certainly sounds more respectable than freakin Jerking Stiff Person Syndrome.
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Dave:
This almost sounds like Standing Still disease. An inflammatory form of Arthritis. There are some differences as I have read but the same general thing. The good news is that Stills disease is treatable, if it turns out to be this. I hope not of course. Arthritis is not curable but is livable. Let me know if I can help out.
rick - T1, RA, and AS
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Well, it could be worse. Imagine if the powers that be decided to shorten the name, and your colleagues started telling each other that you don’t come to conferences any more because you’re a Rigid Jerk.
Seriously, my prayers are also with you.
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Hi Rick, there are some older names for SPS, including “Tin Man Syndrome” and “Moersch-Woltman” syndrome. It does have some similarities with Stills disease but completely different actions. The GABA regulatory system is compromised by (presumably) autoimmunity, so people with SPS have progressively more serious muscle spasms and myoclonus (jerking) in the torso and arms to the point they lock up completely (and can even break bones). So both can end up in total immobility, but one is rheumatological and the other neurological.
And thanks for the offer of help! I think just the emotional support from knowing other people suffer from and survive multiple disorders really helps. Talking a little bit about it here has helped a lot, and I’ll let you all know how it progresses (har har). Mayo Clinic is calling me later today to schedule an extended visit to MN for confirmation and treatment options.
I’m almost certain they’ve thought that anyways, even before I had to send an email letting people know HR has told me I’m not allowed to respond to emails to my university account 
. We academics are rather famous for being, uh, how shall I phrase this… “difficult.”
This is off the wall, but has gluten ataxia been ruled out? As you probably know, celiac disease is strongly linked to TD1. It traditionally (or is known) for presenting in the gut or in the skin (Dermatitis Herpetiformis). It can also affect the brain/neurological systems. People are often mis-diagnosed with MS. Consider researching. If I recall, antibodies might be slightly different:
I hang on this site because I do have celiac disease, autoimmune hives, autoimmune gastritis and Hashimoto’s. I am insulin resistant and when I joined the forum, my doctor and I thought that I might have LADA. I do not.
I sincerely hope you and your medical team can figure this out. Do not give up!
Hi! Yes, unfortunately (or fortunately, depending on how you look at it), I have had Celiacs and gluten ataxia ruled out. There are specific antibodies that are associated with reactions to gluten, and I don’t present with many of the other symptoms.
The neurologists have come to the SPS conclusion after months of testing everything I’ve ever heard of and then some haha. The reason they know it’s a brain issue and not a gut issue is that I have results from my spinal fluid tests showing compromise of the blood brain barrier (high protein, albumin ratio, etc.). That gave them a place to look, and after ruling out MS, neuromyotonia (Isaac’s syndrome), TM, MOG-spectrum disorders, ALS, PLS, and a zillion other things, they’re left with SPS. Or David’s Syndrome if that doesn’t pan out lol.
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So sorry😿for everyone here and especially Dave. I have type1, hashimotos, asthma, eczema, raynauds, severe dry eye which I use restasis for and prolly more not diagnosed, something going on with my parathyroid as well, maybe primary hyperparathyroidism. It is a lot to manage. I have other conditions which are not autoimmune as far as I know anyway, which are difficult as well. But type 1 is by far the worst. Treating the hashimotos with t3 helped quite a bit with the bg management. I would be grateful to just have hashis to deal with.
I have weird phases of rashes, hives etc. , terrible itching, and a feeling of overall inflammation everywhere which come and go and no one has figured it out. I also prolly have celiac or something like it, last time tested I had stopped eating gluten after type 1 diagnosis, so my endo just assumes I do have it or a gluten sensitivity. When I stopped eating all grains and sterilizing dishes etc the symptoms improved, but it is not perfect.
Hi Jen, The site below says it is a phenomenon linked to lupus and other non. Ai and ai diseases like ra and thyroid diseases. My father has it more severely and we have a lot of the same autoimmune and other conditions as well. My allergist also said he thinks my rashes/ hives itching are autoimmune, eczema is autoimmune as well. My grandfather had graves and ra but so far my ra tests are neg even though I have many symptoms.
Meee, I had hyperparathyroidism some years ago and had an operation to put it right.
Left untreated you can get joint pain or your brain does not work well. Please think about having this treated.
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Sorry you have that too. Allergist said idiopathic too I think, but who knows for sure as you say. I often start sneezing after eating. That is good you don’t have ra symptoms. I have some joint swelling and bursitis in joints but nothing major. I don’t know how you know which form you have. I recently had a second dvt as well, so we are trying to find a trigger for that, and I am on blood thinners for life now. I have been on eliquis this time and it is causing a lot of symptoms including terrible reflux and sinus problems and I still feel like I am getting clots, very weird.
Where did you get the surgery and how high was your pth and calcium/ vit d etc? For a long time my endo thought it was low vit d, but now vit d was normal and pth is high, but not super high. I have had two high urine calcium tests and he is doing another one soon. And maybe the scan, did you get the scan and did it show a tumor? I heard it doesn’t always show up on the scan.
I am worried about surgery though for a few reasons and because some people have had damage to their nerves from it.
Just an overnight stay in hospital, I don’t remember the details. There was never any mention of a tumour and I don’t remember a scan, the dr. could feel the hyperthroid thingie with his fingers. You have four of them and they are about as big as a grain of rice, so losing one is no major problem. There was never any mention of damage to nerves.
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@David49 sorry that you are dealing with all of this! Glad to hear you’re getting what sounds like good medical care. If you ever want to chat about the challenges and frustrations of managing multiple chronic illnesses while being an academic, hit me up.
@meee, have your doctors consider Mast Cell Activation Syndrome? Everything you describe sounds very consistent with that, and it can include gluten sensitivity. Mine was doing much better over the winter, but seasonal allergies started early this year (probably the new normal thanks to climate change), which makes my reactivity to everything else much worse, so I’ve had to go back to a highly restricted, low histamine diet. It sucks because that diet ends up being much higher in processed carbs than I’d eat if just managing my diabetes.
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I am glad it went well for you, if you didnt have a tumor why did they do surgery? was pth really high and calcium etc?
The cause of primary hyper pt is nearly always a tumor, It is very odd they would not have said that. But apparently some people don’t have a tumor, according some links I found, but the gland is described as enlarged. but then I don’t understand what causes the high pth.
I know there are four and even one is ok to function but someone told me her friend had nerve damage after the surgery and lost her voice.
I can’t remember now, but I can’t do that diet, no high carbs for me. And no diet has ever made much if any difference to my weird symptoms. . Except eliminating gluten and grains but it was only an improvement from that, it was not a cure. I will ask the doc next time, thanks!
This diet is a low histamine one (no aged, fermented foods, everything super fresh, and then a bunch of things that inherently histamine-releasers ruled out too). For someone with MCAS, other diets may not make much of a difference unless they do a targeted low histamine one, because histamines are found across all kinds of things, and no other diet I know gets rid of them (most have them in one way or another). You can technically do low histamine while eating lower carb, it just takes a lot of work/effort/time to do that, because most processed/easy low carb foods are out (no processed meats or meat cooked over a day in advance, no nuts, no olives, no aged cheese, avocado, etc).
That said, the night and day difference it made with my symptoms was completely worth it, despite the fact that it ruled out so many delicious things and so many convenient things.
This sounds very much like a colleague who ran the gambit of tests for all sort of neurological symptoms from MS…Parkinsonism etc. The seizures were identified as pseudo seizures,(look up PNSE) and psychogenic movements…all severe reactions to anxiety.
Right, that is possible in some cases (it’s called psychogenic or functional neurological symptom disorder). In fact, it’s actually far more common than some of the really rare neurological disorders.
But, as it turns out, your brain can’t fool EMGs and spinal fluid labs. Psychogenic or FNSD is used to describe real symptoms with no physically/chemically detectable mechanistic causes; I have all kinds of physical and biochemical markers for whatever is going on, they just haven’t slapped a label on it.
Why is this an important distinction? Well, for a few reasons:
a) When (some, maybe most) people hear “severe reactions to anxiety,” they don’t take suffering very seriously (“it’s all in your head!”). This is pretty unfair to a huge number of people that suffer from very real, totally uncontrollable symptoms.
b) As my neurologist said, something like 40% of cases with actual positive physical or laboratory results are never labeled anything other than idiopathic, because we just don’t know that much about the nervous system.
c) Difficult to diagnose disorders, and those for which we haven’t (yet) developed diagnostic tests aren’t magically “all in the head.” Did Type 1 diabetes suddenly appear in populations in the 1970s with the advent of anti-GAD and ICA antibody tests? No, it did not.
Sorry to hear about your colleague, but if antidepressants, anti-anxiety meds, and meditation were the likeliest treatments for my particular issue, I’d be headed to a psychiatrist rather than a neurology specialty clinic. Trust me, American insurance would have it no other way.
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