I am diagnosed officially as uctd, with positive ana (1:1280) and anti ro. They call it lupus mainly, the last few years I've been getting progressive Cns type symptoms. I was diagnosed with dystonic tremor in my left hand, but the tremor is progressing.
I also have muscle weakness, early muscle failure, (immediately on lifting my left leg from lying down) muscle cramps and constant pain, palpitations that last for hours, (diagnosed as atrial flutter), dizziness, sweating on standing, slowing speech, trouble urinating, trouble walking, weight loss, constant feeling of fullness, unable to eat, unable to digest food, after years of constant diarrhea and increasing pain in my right side, in my upper stomach, I tried digestive enzymes. And the result was amazing. No diarrhea ,a lot less pain. So clearly I'm not making managing to digest foods. Every month, my cycle makes it all a million times worse. My tremors make life really difficult, the pain is intense. The pain during ovulation leaves me completely unable to walk, pain like nothing else. I cant even stand for 48 hours.
I've been tested for gallstones, had a brain mri, abdominal ultrasound, nothing but a kidney cyst, my rheumy denies it's to do with my autoimmune disease, she is only interested in "classic" lupus symptoms. Something is wrong and it's getting worse. And I'm so fed up. Of course I have the classic lupus symptoms with it, I have the joint pain and the rashes, and the fatigue, I also have dry eyes, but I'm on no meds and treating all of this with cannabis and fish oils, because I cant seem to get any help anywhere else. I also had a toxic nodule causing hyperthyroidism for 4 years, and had to have half my thyroid removed in 2018.
Basically. Help.
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happyp
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I have seen someone at the movement disorder clinic, but not a neurologist. I live in north Wales, so quite far to london. I'm waiting on referral to a gastroenterologist. No one seems to be looking at the bigger picture. And the symptoms are systemic. I'm just seeing different specialists for different symptoms. How would I get a referral to a neurologist? Would it have to be private, it's not something affordable right now.
Who are you seeing at the movement disorder clinic? Neurologists generally are the specialists for movement disorders. I identify with what you are going through. I also have UCTD with mild CNS involvement. This is a tough area. If your rheumatologist ordered an MRI, he is taking you seriously. These things are very hard to diagnose and then hard to treat. Would be happy to tell you more about my experience. Feel free to message me. They often have to treat the symptoms, not the underlying disease.
Hope you get better.
Have you had EMG yet I wonder? Sounds very like my version of Sjögren’s. In my case I do have some white matter lesions in brain, plaque on carotid arteries, hypertension and paired bands on lumbar puncture and small fibre neuropathy plus severe degenerative disc disease.
But still the neurologist said that my worsening tremor, vibrations, palpitations and balance issues were “Functional Neurolgical Disorder”. I have finally have managed to escape Freud’s back yard - but I no longer report many of my neuro symptoms to doctors - which is sad because Sjögren’s often causss neuro manifestations similarly to Lupus.
Your rheumatologist doesn’t sound very with it about connective tissue diseases at all. But I’m unsurprised as mine have been the same until very recently, once I’d seen an eminent Sjögren’s rheum who thinks I have overlapping CTD on top of Sjögren’s.
When I returned to Scotland with her letter things appeared to change - but I’m not sure how long being taken seriously will last if investigations show nothing vascular is occurring.
I too am only on CBD oil for pain but I actually prefer not to take further immunesuppression for now so maybe this is for the best. The CBD oil has really helped pain from the chemo cream on my lip but I’ve only used it topically because mine is quite strong and it gave me nightmares when I took it orally!
Other thing I can suggest is that if you’re on Levothyroxine after your PTR you may want to get copies of your blood work and see if your dosage needs raising of lowering. An endo agreed to raise my dose a month ago and the internal shakes and tremor and oesophageal spasms have certainly eased off a little.
Happy P, I too have UCTD/ Latent Lupus. I’m not a doctor, but you may want to get the Eat Right 4 Your Blood Type app and follow it for food digestive problems.
I wonder if seeing a gastro specialist would be of benefit as you seem to be having problems metabolising food, imho? I have some similar symptoms and my gastro has suggested I may have a type of glycogen storage/metabolism disorder, which is very rare and therefore often overlooked. Just a thought......
I have the same diegnosis as you with the same high ana and live in the same area.
It sounds as if a referral to a Neurologist would be good. As far as I know In our area we have access to two who come from Liverpool twice per month to the local hospitals. Both are good, although one specialises more in epilepsy, and you can have further tests if they authorise them at the Walton Centre in Liverpool which is excellent.
Some of your symptoms - particularly the gastro and bladder symptoms could possibly be caused by your mast cells becoming over active. Have you considered or googled mast cell activation syndrome, Mcas?
You also said some digestive enzymes helped. If these were daosin then these can help significantly if taken before meals by someone with histamine intolerance or also Mcas. Both these medical problems cause systemic issues although perhaps they would not explain your Cns issues.
The bad news is at the moment the NHS very rarely deals with histamine and Mcas and certainly not in North Wales nor our NHS referral area into North West England. I have had to see a consultants privately in London where i saw an immunologist who diagnosed my Mcas/histamine issues. When he explained what was happening I did not understand what he was talking about as I had not heard of mast cells.
Fortunately, the drugs used to treat Mcas or histamine intolerance (which are not the same but require similar treatment) are very cheap and my Welsh GP has agreed to precribe the drugs based on the consultant's recommendations. Being successfully treated for this as well as uctd has greatly helped my health. Btw is there a reason why you are not on hydroxychloroquine for your uctd or have I misunderstood what you wrote?
I know you said it is not possible for you to go privately and travel so far but perhaps you could pursue an NHS neurology referral in Wales and look up the mast cell/histamine stuff. If any of it resonates you could discuss it with your GP and see whether your GP thinks it might be worth you trying antihistamines - H1 and H2 blockers - to see if your symptoms improve. This would have to with the agreement of your Lupus/uctd consultant. Hopefully she/he will have heard of Mcas as it is a fairly newly recognised disease - 2012 by the World Health Organisation.
Very much hope this helps - none of it is medical advice just some left of field suggestions which might be worth looking into. Please do pm me if you would like any more info.
Have you had your thyroid levels checked recently? Lots of those symptoms could be related to that.. tremors, brain fog, dry eye, bad cycles. The thyroid is a master controlling gland and when that is out of whack nothing works right.
Birth control pills will prevent ovulation so you might want to ask for that, at least for a while to see if it helps.
Often when people have lupus they think everything is related to that, but there are many other things that can cause similar problems. So make sure your thyroid is OK and get treatment for the ovulation pain from a GYN.
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