Hi im new here and wondered if anyone suffered facial droop one side. mine was right side face and mouth along with muscle weakness, worst on right side but both sides. Following this was lots of inflammation and skin issues fatigue awful brain fog. facial swelling and face lesion which grew would scale and go and return with flares along with raised white areas . very blue sclera flares with brown marks.chest pain swelling red v white marks, breathlessness mainly on exertion and muscle problems on exertion. Sinus problems helped by wash, heart rate problems, gastro problems joints and muscles and signs of anetoderma on skin especially stinging nettle look and indents that look like pitting oedema but appear on their own. Cannot splay fingers or move toes after using.
been a long journey, was initially given hydroxychloroquine following knee and hand problems then after few months they were stopped and wham I came down with a multitude of wide ranging systemic symptoms . covid and neglect left progression until a trial of high dose steroids last year which helped inflammation and skin and markedly disturbing head fog problems.Still eye ptosis but mouth only slightly drooped, smooth forehead side of ptosis wrinkled forehead the other side.
steroids helped as did hydroxy but by no means cured. Elbows still dry lumpy blistery and bruise easy and long lasting.
Latest diagnosis fibro and ununifying symptoms but history of skin muscle weakness and all not included in history.
It has come to light that I was initially given hydroxy to see if helped with symptoms of then which it did (as did steroids at height of bad health) as suspected mctd lupus aps. As they helped and told to discontinue with progression I wonder if anyone can shed any light.
sorry thats a lot but its been almost 7 years with no help
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stiff19
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I have an ununifying diagnosis but must stress over past few years have no history within health as ongoing problems in nhs. Where appointments not available and very symptomatic history is vital, is vital in fact anyway,and suspect reason for ununifying diagnosis is because ,discharged from rheumatology with fibro diagnosis despite sever progression2018/19, covid and crisis left me for years unseen and recently seen to get ununifying diagnosis but no history taken since discharge , just reverting back to then. Unless I can find a specialist rheumatologist with interest in journey to involve history and where I am at today I am at a loss and simply quite scared, this has proved to be unavailable in local health trust.
So sorry you are left in the metaphorical health darkness. As I am in the States I have no practical advice, save crossing my fingers in hope that you do get a rheumy who will do a comprehensive review.
I have a wild theory regarding hydroxy. ( And as an English major with no medical training) --From reading reports here I think hydroxy may help APS patients with Covid, but not other patients. . IMO, this explains the initial confusion regarding hydroxy and covid - particularly from our ex narcissistic president. I also read that covid infections can produce a number of after-effects.
Thankyou🙏 yes it's a difficult place to be and only getting harder and you're right I need a real review from rheumatologist who gives a hoot. Im not sure I ever had covid at all, but who knows🤷♀️ All I know is hydroxy was helping and all hell broke lose when stopped and rampaged until high dose steroids and they relieved not cured. I have previously suffered high heart rate and only one time of low when finished steroids then back to high yet today feeling unwell after good week or so and two low heart rate warnings and I felt light headed and giddy 🤷♀️ oh well on with a search for rheumatologist
no was over 6 years ago and have been left unwell since. Was told initially bells then cleared then shortly after happened again told bells again and treated and never been the same since. when I took antibiotics and steroid as treatment back then my problems started and initially my gums went back temporarily then skin conditions slowly began creeping in. Bells Palsy then ruled out twice by facial specialst and facial palsy team and since all that no diagnosis to date . no blood thinners no. seeing ophthalmology next. If was a TIA I wonder if that could leave a damage 🤷♀️
nice to meet you too and thankyou. yes I need to get help with all this, interesting information which I appreciate .no help presently but will buy some aspirin . who helped you was it rheumatology or different? best wishes to you and glad you are now stable. with no diagnosis I was told to meditate 🤷♀️to avoid stress
Don’t panic! It may be Bells Palsy not a TIA. Try to relax and not to get too stressed. If you think you have APS take baby aspirin. that’s what my rheumatologist advised when my APS was diagnosed from blood tests.
Thankyou yes im passed the panic just angry and frustrated as no answers but I guess I need to find a rheumatologist hopefully a good one . Bells was ruled out twice by facial specialists but I also know was not as was not only face affected but limbs also. No tests were ever done when happened, first time doc just said bells, second time told bells , checked reflexes in arms and legs which were slow but said bells and sent me on my way from a very busy a an e department. I guess from beginning I should have insisted further testing but hindsight is a funny thing.
No I was diagnosed at time with bells palsy, twice since ruled out by specialists and still no answers but bells wouldn't have affected anything than my face not limbs ive since learned and still no answers to any of it
Hi, it is really important if you get a diagnosis of Fibro to understand that the tests for Thyroid and also B12 are not very reliable on the NHS, I refused to believe in a diagnosis of Fibro and ordered my own private tests from MediChecks, their most comprehensive Thyroid panel which showed I had a serious problem with my Thyroid, (an untreated thyroid causes terrible problems) as does low B12, or folate, D or Iron. One of the best things I ever did was to order this test and join the various forums supporting B12 and also Thyroid. MaryF
oh so true and if only I had of done this much sooner it may have been one of the best things I did, I did but not as soon as should and I wonder with proper reliable nhs testing and clinical evaluations how much better many lives could be. I have undiagnosed ptosis, one neurologist his opinion of seronegative myasthenia dismissed by others, yet can come along with thyroid issues yet still no answers . Getting the tests if affordable is easy part getting them used in nhs is hard part but you are spot on ,I think thyroid panels so important.🙏
I remember speaking to a few years ago about the possibility of APS-on the lupus UK forum. ( I had been diagnosed with ScLE and was looking to learn a fit more about it.)
Happy you have found your way here.
I suggest you see ( if you can) an APS specialist at London Lupus Centre . It would be nice to thoroughly investigate any other co occurring tag along auto immune diseases ( if any) just to make sure all things are working correctly together.
Is your ptosis transient or worsening? Or just still present. What panels have been run? Do you have Horner syndrome with the ptosis( pupil is also effected) How is your glucose level and have you been tested for diabetes? Why if HCQ was helping were you taken off of it? Bilateral mouth dropping is mostly age related and unilateral can be too. Do not self treat with aspirin please, that is not sound advice without a physician’s approval.
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