Hello - anyone that has time to respond!
I have been having symptoms for approx 4 years - started like the 'flu except with a rash on my face, neck (mostly around glands), back of scalp, back, arms, back of legs. I had muscular weakness (mostly left side, felt as though I had been swimming for hours the day before), pins and needles in back of head, pain in left eye, shaking hands etc. This lasted four months, I saw dermatologist, neurologist x 2, cardiologist (have had arrythmia my whole life) and all told me I was a stressed out mother and to take anti-depressants. I have had shorter 'episodes' since then - I can see a pattern to them now - first the rash (lesions), then I get 'busy' can't stop, can't get to sleep, wake up early etc - then a bad headache, then my left eye is ultra sensitive to light/aches/blurry - I then have an awful aching bladder, then lower back pain radiating into my right hip, slight weakness in left leg.
Luckily my eldest son see's a psychiatrist for adhd/ocd - he has gotten to know me very well and is the only Doctor who doesn't believe any of this is stress related (this has been proven after major stress events in my life has not triggered a flare eg: my three year old neice diagnosed with a brain tumour a few months ago). I also get extreme brain 'fog?' hard to describe like my brain is in a bucket of water - very hard to think or make a decision - I also make a lot of spelling mistakes when typing/banking errors as I get my figures around the wrong way. My nose/slightly across cheeks/between eyes looks sunburnt often. I have raynauds in my hands and feet. My son's doctor thinks I have lupus but my blood tests are normal. Any help or suggestions would be greatly appreciated - I know I'm not crazy and am sick of feeling like this - I have had the 'lead up' symptoms for the last week, brain fog today and I'm running scared - Thanks so much in advance ~*~
First of all, many of us are told we may be crazy, have anxiety problems, or have psychiatric problems that are causing our symptoms. When a person's blood work is negative- Doctors tend to try and put the ownership back on US as patients. That way they can step back and not care what happens.
With that being said, I DO NOT THINK YOU ARE CRAZY! Just because your blood work is negative it does NOT mean that you DONT have Lupus. Many of us "Lupies" go through periods of time where the blood work is negative. Medical science is not perfect, Lupus can occur with negative blood work!
Has your doctor tested you for Antiphospholipid Syndrome? APS can be responsible for the weakness and "brain fog" that you describe. I posted a topic about APS under the Stroke board if you want to go review the symptoms and related blood work.
It sounds to me like you need some new doctors! Have you seen a Dermatologist? Perhaps they could take a skin scraping to see what is going on with the rashes. They can tell what disorder is causing it and sometimes its easier to get diagnosed with biopsies rather than blood work. Some doctors will even subject there patients to a kidney biopsy to get diagnosed!
I think that you need to see a good doctor that not only specializes in "Sero negative Lupus" and "Sero Negative APS" (this means that the blood work is negative) because it sounds like you do have the symptoms. A Rheumatologist would be the best doctor to see, as long as they are a Lupus specialist! Sometimes it takes a really bad round of inflammation before the bloods will come back positive, and trust me, you dont want that to happen hon. You take care and reach out to others so that you can be informed! I am glad to see you here and I hope you feel better soon!
Oh shoot, I just re-read your post and saw that you did already go to a Dermatologist. Did she/he biopsy your rash?
Also- you need to see an Opthamologist about your blurry vision ASAP. I have double and blurred vision from the Antiphospholipid Syndrome, my optic nerves are inflamed. They tried to say it was MS, but it wasn't.. It was APS! It's such a sneaky one. Anyway- sorry I didn't see that you had seen a dermatologist. Take care and best wishes!
Hi ~ Thank you so much for your kind words - I was having a bad night last night - it's so frustrating as anyone with anything like this would understand. I haven't had a biopsy for three years, the first one came back '?'. I had an MRI also of my brain/spine - the brain mRI showed one 'spot' however the doctors shrugged it off. I even went to the extreme of flying to a different state to see another neurologist - he was the worst suggested tri-cyclic anti-depressants and nothing more - said it was migraine - my son's doctor said it would have to be a bad migraine to last for four months! also he had never heard of migraine with lesions.
I'm not sure if this is related to APS but I get what looks like a purple slap mark on the back of each thigh. My facial lesions seem to stem from the gland in my cheek near my ear (the gland gets like a lump on it either side of my face) - my ears 'pop' and once one of my eardrums burst in a big way - I couldn't hear for nearly a week, fluid draining from the ear for almost two weeks.
My vision is o.k. in my right eye - I have a black spot 'flaoter' in front of my left eye most of the time.
I guess with my back being the worst ever, my glands are up in my groin/neck (once I had lumps come up in my stomach - dr said it was cellulite - amazingly they were gone after two weeks) - I have weakness in my forearms - bad eye etc I should do something now.
We have a lack of services here - my 12 year old son has to see an adult psychiatrist as the closest child psychiatrist is 200km away (the one he see's is brilliant and has been wonderful to me).
The two dermatologists i have seen were no help at all - didn't even look at my face without make-up - no lights/lamps/tests - told me I have prurigo nodularis - I am told that is latin for itchy rash - I'm not scratching!
My blood pressure is low and drops when I stand up (or the other way whichever one it is not supposed to do).
The only result I have had back from blood tests is high Oestrogen level and one of the markers for Coeliac disease (I'm not sure which one).