I have been under a neurologist for over 1 year, was ? MS but they say not.
Lots of symptoms such as brain fog/cognitive issues/word finding an issue. Balance off, Fatigue, sensory issues down back and 2 episodes of visual disturbances in Left eye (told occular migraines)
After being told not MS (I have had 3 MRI scans in the last year-multiple white matter intense areas, first report put ? demyelination) I found out about Hughes, I had 4 consecutive miscarriages (gave up trying then so could have had more?) I had 1 prem baby before that who is now 12 and well!
I had a subtotal thyroidectomy 15 years ago after a awful bout of Rubella and scarletina (? immune response?) left me with a multi nodular goitre. (I was left untreated/not on thyroxine for 5 years as my TSH was normal but a low/borderline T4!!!!!!!) I sought private help and got medicated on thyroxine and GP then prescribed it as they saw the difference in me with a T4 in the upper end of normal.
I got my GP to refer me to St Thomas/Guys (Proff Hunts team) and they have done all the tests for hughes, all my bloods are fine.
I put myself on Asprin 75 myself and saw a great improvement but still issues with fatigue and word finding. The team at St Thomas said to stay on it and they will get my MRI scans reviewed by a neuro radiologist as the reports were so poor!
I took myself off the asprin last week as I thought I would see what happened (as sometimes I feel everyone thinks all this is in my head and its a placebo effect?)
Result of coming off asprin.......symptoms back and a funny thing yesterday where half my face was red hot, other side cool (you could literally draw a line down my face and feel the difference) Left side of face feels ever so slightly tingly but not hot today.........any ideas anyone?
I am going back to St Thomas in April, I mentioned sero negative hughes syndrome but no answers.
Feel frustrated and like I am going slowly mad!
Any help or advice would be greatly appreciated
Thank you all x