Left Side of face hot-any advice please

[bathouse]

Hi

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

[MaryF Administrator]

For some reason St Thomas' Hospital, despite the advice on our charity pages still are not recognizing seronegative Hughes Syndrome, please attend your next appointment, with your medical history written out in bullet points, and also with this page printed off: hughes-syndrome.org/about-h...

Also consider taking your NHS results for everything and paying for an appointment at The London Lupus Centre, at London Bridge

You are not alone with this, I and my children are sero negative and many many other patients on here, there clearly needs to be more advice for people, and I and a number of people are limbering up to co write a book on this very subject due to the failure in so many areas, MaryF

[Manofmendip in reply to MaryF]

I completely agree with my colleague, Mary's, advice.

Dave

[MaryF Administrator in reply to Manofmendip]

And patients MUST take the trouble to fill in feedback via NHS Choices, luckily in my case for surgeries or hospitals I give glowing reports where appropriate, so important to praise where praise is due, but if a service is NOT up to scratch it needs airing. MaryF

[Lure2]

I do hope you continue with your baby-Aspirin. Perhaps you even need more than that.

I started with positive antibodies of all the sorts for APS after my first TIAs. Baby-Aspirin helped the first years and then when I had my hyperparaoperation I was worse and the symptoms came back so I tried warfarin (as my doctors suggested) and the symptoms disapperared for good . (I hope - it is 4 years now.)

Please do not get mad or crazy - in that case we are all mad and crazy. There are seronegative patients as Mary says!

Kerstin

[bathouse]

Thank you all for taking the time to read my post and reply, much appreciated.

You do feel a hypochondriac as I always look "well"

I will do as you say Mary, Good advice! The staff at St Thomas have been lovely, they have listened but still no answers, they are so overworked and stretched, I do not blame them at all.

I will let you know how I get on at the end of April and will book a private appointment at London Bridge if I am still left without answers.

Very best wishes to you all and thanks for all the hard work you do on here x

Sue

[MaryF Administrator in reply to bathouse]

Thank you we all do our best, just be very firm about your symptoms and history, I also like all the staff at St Thomas' Hospital, but the stance on Seronegativity is awful for some patients and in some cases downright dangerous! MaryF

[jusroxy1]

So Hughes testing came back negative?

Can you repeat the testing for the Anti phospholipid antibodies test? I had a negative Anti phospholipid antibodies test for 2 years. Last couple of months 2 positive test 12 weeks apart. If at first you don't succeed. Try again. I stopped counting how many doctors I've seen after the 35th. Be your own patient advocate. Don't give up. Doctors & test & symptoms make you feel like you're losing your mind. 2 years ago after being hospitalized for 10 days with double saddle pulmonary embolism & a DVT. Blood clot near my heart causing my heart to dysfunction & enlarge. I told my husband I think I have Anti phospholipid syndrome. I've had doctors repeated all my test & they came back negative. Finally....after 2 years of begging to be sent to a rheumatologist. I was sent to Stanford Rheumatologist. After one visit of going over symptoms. She retested for everything including antibodies for anti phospholipid syndrome. After 2 years I've gotten a diagnosis. I've been told by multiple doctors what difference would a diagnosis make? It doesn't change treatment. It changes everything. You know longer feel like you're going mad. You have an explanation for the madness.

[GinaD]

No, you're not mad. And it might provide some validadtion to visit one of my favorite health books: "In the Kingdom of the Sick" which speaks to the implied criticism we citizens of thre "chronic disease" kingdom must put up with. And I too am currently battling the seronegative battle as well.

Again: No, you're not mad!

[bathouse]

Thanks all.

Yes my blood tests were negative.