MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Over the past couple of years I've experienced increasing difficulties with speech including word-finding problems, my brain substituting words or switching parts of words, and the occasional stutter. For example, this morning I told my dogs to "eat your feet." The words "Christmas theme" turned into "thistmas creme." It's like my brain auto-corrects what I want to say and strange things come out. These problems contributed to my leaving work last year, because there'd be long pauses in meetings when I struggled to find a word or completely lost the point of what I was trying to say. My short-term memory is terrible.
My neurologist is referring me for neuropsychological testing but thinks it's a case of brain fog and the side effects of the boat load of medications I'm on. All brain tests and blood flow to brain tests are normal. To me the language difficulties and weird, unexplained physical symptoms (muscle weakness, twitching limbs, shakiness, etc.) are scary. My neurologist probably thinks I'm a hypochondriac--he even asked if my rheumatologist concurs that I have a rheumatological disease. I have a strong family history of Parkinson's and am super aware of anything resembling a neurological disease.
Does anybody else have this? Have you gotten testing to try to determine the cause or just accepted it as MCTD weirdness? Every test has been normal, including blood work, MRI, nerve and muscle conduction, etc. I'm in my mid-50s so age shouldn't really be a factor (I think).
My neurologist is referring me for neuropsychological testing but thinks it's a case of brain fog and the side effects of the boat load of medications I'm on. All brain tests and blood flow to brain tests are normal. To me the language difficulties and weird, unexplained physical symptoms (muscle weakness, twitching limbs, shakiness, etc.) are scary. My neurologist probably thinks I'm a hypochondriac--he even asked if my rheumatologist concurs that I have a rheumatological disease. I have a strong family history of Parkinson's and am super aware of anything resembling a neurological disease.
Does anybody else have this? Have you gotten testing to try to determine the cause or just accepted it as MCTD weirdness? Every test has been normal, including blood work, MRI, nerve and muscle conduction, etc. I'm in my mid-50s so age shouldn't really be a factor (I think).
I found some help with taking two aspirin a day. Also, taking cinnamon.
I think I've mentioned this before, but there is an autoimmune disease called APS that can cause these kind of symptoms. There was a doctor, Dr. Hughes, who was treating these symptoms with anticoagulants, but doctors are so afraid of anticoagulants that they are trying to limit the people they will give them to. So in addition to the antibodies, you have to have had a stroke, PE or multiple miscarriages.
Also, I think plaquenil does help with this, too, although it takes a
long time to work.
Neurologist will automatically think you are crazy, rheumatologist just seem to be content for you to have the symptoms as long as nothing shows up on your MRI, and memory-cognative doctors will give you an antidepressant.
You can ask for these blood tests:
http://www.hughes-syndrome.org/about-hughes-syndrome/blood-tests.php
I think in 15 years, Dr. Hughes will be found to be right, but right now it is really difficult to find any kind of adequate treatment for this.
Oh, also, I find a higher dose of prednisone helps me a good deal with this, but of course the side effects.... But no one can stop you from taking aspirin. Cassia cinnamon has coumarin in it, which is in warfarin. I was wondering if my INR (how they measure the effect of blood thinners) would go up with only Cinnamon. It did, but only slightly, from .8 to 1, and 1 is normal. Although I knew I had succeeded in thinning my blood when I lost my cookies and ended up with a nosebleed that was like having blood coming out of my nose like a garden hose. But if it helps me speak, write, and think, I'll self treat.
(I even had a seizure with a low grade seizure, and the "experts" still thought it was depression. My rheumatologist has given me zoloft because I couldn't take Cymbalta, so I had to be depressed, But before this flare, I had been in such a great mood, so far from depressed.)
Cinnamon also lowers your blood pressure (I saw this effect), and lowers your blood sugar. I have to take it with food, because I get a low blood sugar headache.
Good luck. There are a very few doctors in the US who knows about APS and will treat it without "events." In three years, I haven't found ones, even the experts, since I haven't had an event, because weird neuro symptoms are considered an event, even though these are known symptoms of APS.
I used to be an editor and writer, so this is just so frustrating for me.
I think these are micro blood-flow or clotting problems-- sub-TIA hyperperfusion events-- that just kind of come and go, and get worse whenever we are stressed.
It is just insanely hard now starting my new practice-- come down the stairs and I know I need four things before I leave the house, but can't remember what they are.
The only thing that helps for me is getting enough sleep and exercise and being ruthless in limiting mindless rote tasks, like updating phones or learning complicated new software for some interview or credential-- some ludicrous online task you only have to do once. That stuff is very bad for my brain. Insurance billing is bad for my brain.
When I eat right, sleep right, spend enough time outdoors and with my wife and the dogs and my younger friends from grad school and AA, I feel like I could do this job for another 15 years at least.
If I let myself get bogged down on the bad days, it's just a downward spiral of low self esteem, and I see no reason to go there.
For word finding, ANY drugs make it worse. Would love to go off the painkillers and the tiny dose of Ativan I take. Parkinson's drugs make word finding worse. Meds are always a trade off.
Do I need to worry about any type of clotting and sub-TIA types of things if my blood pressure is ok? That's scary stuff.
There seems to be a version of this where people have a lot of MS symptoms like I have for a long time, but don't have MS. I feel Dr. Hughes is on the right track by just trying anticoagulation on them to see if they get better. After I had a seizure I was in the hospital for 10 days. (For weeks before that my memory was shot, I was having trouble speaking, and my limbs were jerking, etc.) In the hospital they gave me heperin to prevent blood clots from not moving, but I got better. They treated me like a lunatic at the hospital. After I left the hospital, I kept wondering how I got better without any treatment. I even wondered if I self-shocked my nervous system into working better. So I think there is a treatment out there that might help, but I can't get it, because I haven't had blood clots, TIAs or PE. And I also think my version of this, if I do have it, doesn't cause blood clots, just blood that is sticky enough to cause these symptoms. And I'm 63. So I would suggest having the tests. If they are positive, they may suggest aspirin, which is what I'm taking. A neuro suggested it for me, but it was after I brought up APS. I think he was blowing me off, but it worked, and no doctor says, don't take it. (Also, a rhuemy back in the 80s suggested it for migraines.)
I'm also thinking of asking for a higher dose of prednisone, if I can't get any anticoagulation.
Anyway, I think it's a Ann's theory (or Hughes's) is very plausible. My APS antibodies tested outside what I thought was the normal range, but Kaiser was like, "Nah, our range is different." I was really surprised they weren't more concerned, as there is plenty of evidence linking antiphospholipid antibodies with all kinds of cognitive symptoms; I had a clear change from my baseline a few years earlier, and I thought it was significant.
I do not think that Heparin or blood thinners improved my mental acuity or memory, but of course I can't REMEMBER clearly so it's very hard to say. :)
I advise mixing Heparin with any of the... er, recently legalized substances for pain and inflammation-- in fact, I advocate against those substances whether you are using blood thinners or not.
I had a bad experience involving hallucinations of golf socks with those substances and Heparin, and I think that might be what got my last comment deleted/moderated.
Or maybe I just forgot to hit the "add" button.
I hope you find some answers!
Gabrielle