After 4 years I still don't really know what I have.Initially diagnosed with Undifferentiated Inflammatory Arthritis, then discovered by accident that it had changed to Connective Tissue Disease and Lupus.
I also discovered only yesterday that at some point I tested positive for ANA which I've never been told.
So I have confirmed anti b2 glycoprotein 1 Igg, positive ANA and have for at least 3 years had low platelets.
No one can seem to tell me what this all amounts to.
I really don't feel that I have symptoms of lupus like rashes or fatigue although i do get easily tired especially when doing something new or out of theordinary. Ive also been a migraine and cluster headaches suffere for decades for which I inject fremanezumab (Ajovy) once a month. To complicate things further I get clear watery stuff leaking from my nose every time I bend forward and they're finally looking into it. I also have a small hole in the roof of my mouth called Patent Nasopalatine Duct and I can't help but wonder if there is a link to the migraines. The vomiting during an attack is so violent I feel as though I may have blown a gasket!
At a dermatology appointment recently (got a actinic keratosis on nose) the specialist nurse also looked at the red and purple spots and petechiae then at my notes and said " oh yes that's because of your ITP." I'm not a doctor but does having slightly low platelets really mean I have yet another condition?? And why has no one told me?
I get mouth ulcers and in the nose but they're not constant and even though they are sometimes painful they are mostly short lived.
I've been on hydroxychloroquine for 4 years, my main symptoms are joint pain, really bad feet and Raynaud's with finger swelling, red purple spots and ulcer on fingertip. All on right hand.
I also get petechiae and purpura in random places, regularly on the backs of my hands.
Most recent blood test also shows high haemoglobin MCH and asking GP about it is like trying to get blood from a stone.
Next rheumatology appointment has been cancelled several times but they rang yesterday and offered me one on Tuesday. I want to ask all the right questions but am beginning to feel that I sound a bit deranged.
Bloods being repeated with thyroid check on Monday. B12 very good last time checked.
Thanks for reading xx
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Brychni
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oh hun I really feel for you . It’s so blooming muddled isn’t it ? Left hand 🫲 doesn’t know what right hand 🫱 is doing , no one communicates properly with each other and we’re left trying to function 😏. Am I right I’m thinking you don’t see same rheumatologist each time ?
Your migraines sound horrendous I’m so sorry 😞.
. I suppose the million dollar question for Tuesday is “ would my symptoms improve on a different medication ? . Like you I’ve done 4 years on hydroxy and several courses of pred when things kick off .
I’m sorry I can’t be of much use but I wanted to just say I understand and it’s pants . Big hugs xxx
Thank you Tiggywoos for your reply. Yes, you're right; there isn't much joined up thinking although I do see the same rheumatologist lately and she is very thorough but doesn't explain much and when I ask questions she often says somethign alarming that I don't really understand and then I just scurry off without another word. I also have to get printouts of my blood tests I have had a the GP surgery because she can't always see them. (?)
I think they hydroxychlororquine has 'modified' whatever disease there is and I too take prednisolone when things are unbearable and it works like magic. Generally I am a lot better off than most.
However, my life is ruled and has been ruined by migraines. For 2 years I have been on the fremanazumab injections and they have changed my life for the better; I am working full time but I still get the occasional migraine and wake up most days needing to take some sort of painkiller or a sumatriptan injection if it's full blown, and I hate it. I am so tired of feeling like crap most of the time and so I am always looking for the 'underlying cause' like the antibodies - I don't have full blown antiphospholipid syndrome, but the anibtody I have is the worst one, that causes blood clotting and I take an aspirin every day (when I remember) however I have also been told not to take ibuprofen or aspririn because of the ITP - I'm sorry but I just don't believe I have ITP! I know my platelets are low but they're not that low. Apparently all these things can cause migraines and so I naturally want to get to the bottom of them.
Regarding the hole in the roof of my mouth; I finally met a GP who knew exactly what it was and I was so happy to be able to discuss my concerns about it without being looked at as if was insane! My main concern is that the fluid that comes through it is the same as the fluid that comes from my nose and also that if stuff can come down it can probably also go up into the cavity, or whatever it leads to. I once had a bit of oat cracker husk stuck in it and was so panicked I made an appointment witht the dentist to get it out becasue every time I used my tongue to shift it, it was going further in! Perhaps TMI. Anyway, eventually it came out and I didn't have to go to the dentist. I am so tempted to pay for a private MRI of my head because there is so much going on with the nose, obital bone pain wise that I can't imagine there is't something wong in there that's causing the migraines.
The diagnosis of these autoimmune diseases is complicated, right? I do think the rheumatologist can explain how you evolved from undifferentiated connection tissue disease to lupus.
Most of us start out with a few symptoms and positive blood tests but then we progress. It sounds like you progressed in ways that put you in the lupus category such as low platelets and anti-phospholipid antibodies.
Have you ever been on steroids for your low platelets? There may be a range of severity. I know a young woman with low platelets who is watched but has never needed medication but I have seen a patient hospitalized with severe ITP.
I totally understand what you’re going through, it took about 10 years to finally get diagnosed for me. I had a lot of weird and not so wonderful illnesses throughout this time, very high ESRs and been in hospital with inflammation markers through the roof. I’ve had rashes but never had them. long enough to get biopsies till last year I was in so much pain with my hand I had an urgent appointment to see my Rheumy, it was then she saw my rash and thought it looked like a lupus rash, I was seen by a dermotologist within a week and had a biopsy which confirmed it was that, she is now joining the dots up, it was always MCTD she said I had but it was only when she had students in that I asked her in frustration what is wrong with me,, she is a stickler for blood results but mine never showed much apart from high RF. I’ve had lymphoma which could be a complication of lupus but my Rheumy did start taking me seriously after I had that. I’ve been on hydroxy for many years with quite a lot of steroid jabs and oral tablets. Hang in there and keep a diary of everything that affects you. Hope your appointment is a good one.
I'm guessing you see a neurologist re. Migraines. When I was on a neurological ward after my brain haemorrhage there was a lady with a leaky nose which was brain fluid. Not saying this is your situation but a test of your nose fluid would be good I would have thought. If you are leaking brain fluid you would get horrendous migraines. Anyway a neurologist can easily swab you I would have thought. I was getting awful migraines a lot and headaches but since being on a higher dose blood pressure tablet they are greatly reduced. Apparently blood pressure meds work well for headaches. Hopefully you can see a neurologist and discuss a plan as I know headaches and migraines really affect your life so much. Take care xx
Hi Brychni, have you seen a neurologist for your headaches, I’m assuming you don't have a root cause for whats causing these? also possibly ENT to see if its sinus involvement and what is happening with hole in the roof of your mouth?
when you see the rheumatologist you could ask; when i saw you last you said i had ??? but i forgot to ask what is that exactly? and hopefully you'll get the answer you're looking for or like my rheumy will say, thats not my remit you need to see (whichever consultant he thinks it should be)
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