Ok, I'm 45 woman who for the last few years has been battling an unknown illness. It started out with problems with speech and memory problems, stuttering and loss of sensation in left foot. Of course, the first thought was a stroke - that was ruled out.
This progressed to chronic dizzy spells, reduced hand strength, loss of left foot mobility (no reflex), electrical impulses throughout body, extreme fatigue etc. Had MRI's (clear except non specific white matter on brain), Cat scan (malformed vein on right side), Lumbar puncture (clear), ENG, EEG and of course blood work. They felt it might be MS - not ruled out, but indicated not likely either as I'm not following the "typical" pattern.
Along the way, on different visits, I've been complaining about my wrists/hands getting bad cramps (waking me up at night), and difficulty grasping/holding things and dropping things. It was originally thought as being Carpal tunnel, then changed to Tendonitis. Given 2 splints to wear - but they really didn't work - when my hands cramped up, it was made even worse with the splints on - so I stopped using them and just said "oh well, guess this the way it'll be from now on. Then I started getting the same pain in the right elbow - of course the result was "get an elbow splint" - didn't even try, as no real success with the hand splints.
My left leg is progressivly getting worse - difficulty walking down stairs. Everything is really stiff, hurts all the time. So I was thinking, do I need to get knee splints now? Gonna look like a mummy soon!
So, getting fed up with Neuro, ENT and primary care giver, I've been doing my own research. About 3 years ago, people started commenting on my red face - I always thought it was Rosacea. So, I looked into it - well, its not Rosacea - but it sure looks alot like the butterfly rash of Lupus. So, its now starting to make sense to me that this mysterious illness is really Lupus.
I have the rash (including a small round rash on my left foot thats been here about 1.5 years the doctor said was a bruise - never seen a bruise last this long - this rash does not look like any of the rashes I've studied online - so not sure if connected or not). The face rash goes beet red if I'm in the sun and my dizzy spells become extreme too.
Joint pains and aches - stiff
had a psychotic meltdown - now on anti-depressants - thats working fine now
Chronic dizzy spells - am on Betahistine - it has reduced the severity of the spells, but not gone yet
When they take blood - it typically clots before they can test it - so they have to retake the blood and ship directly to lab for immediate testing. They also have great difficulty getting blood - usually needs to get senior nurse in - they seem better trained at getting blood from those of us that don't give it up easily - This was never a problem in my earlier years.
So, I am looking for any insight from others who know about this. I see my primary care giver next month - I'm really looking for ways I can approach this with her.
I'm really surprised that with all the specialists I've seen, not one of them have every commented on my very red face. I've always seen this as a cosmetic issue - not a symptom of an illness. You would think that one of them would have said something - here I am, no medical degree stumbling on a possible answer.
Newbrunswick, I'm sorry you've had so much going on & are still searching for answers. Obviously, I'm just a patient. That said, I think your instinct to have your facial rash looked at in a new light makes 100%, total sense. In your shoes, I'd want to see a rheumatologist, one who is known to specialize in lupus. (I phrased it like that because I saw rheumies who were into arthritis, etc. but didn't seem to know much about lupus, or to have very many lupus patients.)
To broach the subject with your primary, you could tell a social white lie, if you don't want her to think you've been reading & pondering on your own. Something along the lines of, "A woman approached me in [fill in name of local supermarket] and asked how long I'd had the lupus rash."
Have you read the "sticky posts" (permanent info posts) at the top of the Board? You'll find basic info on lupus & on antiphospholipid syndrome (APS), which is a clotting disorder seen in lupus & also seen standalone.
For much greater detail, there are some excellent hardcover lupus books in most libraries & bookstores. Dr. Daniel Wallace is very good, as is Dr. Robert Lahita. In Canada, perhaps Dr. Graham Hughes (he's British) is easiest to find.
I'm really sorry your problems are continuing & hope that your doctor can expedite things for you. Sincerely, Vee
P.S. I have bruise/rashlike areas on my ankles that aren't really either. It's really cutaneous vasculitis, not a problem for me because my skin surface is intact. But when cutaneous vasulitis destroys the skin, it IS a problem. In contrast, the big kind, SYSTEMIC vasculitis, can cause profound internal damage.
Vee, thanks! I like approaching the topic like you suggested.
I have read the stickies, just need to keep reading them, as my memory is so poor I can't retain anything right now.
I'm going to keep following up on this. Obviously, getting a good rheumy is going to be important. Here where I am, you don't have much of a choice who you are referred to - so, I'm going to try doing some research before hand so that I can say - can I be referred to..... Can you suggest a good way to research how to find a good rheumy in Canada? Saw the link for US.
I'm really sorry about all that you've been through. I also would go to the doctor with a butterfly rash, and no one would make a peep. VeeJ is right, you should see a rheum that deals with Lupus. I had a friend take pictures of the rash on my face at it's worse, as well as the rashes I would get on my body with minimal sun exposure. That might help, especially if you don't have the rash the day you go in.
A lot of the doctors I saw were very dismissive, I have severe hip pain and they would often tell me to just rest it, or that nothing could seriously be wrong. I have learned (only with the strength of a friend and my SO beside me) to take the reins in a doctors office, and if they aren't suiting your needs you can leave and find a better one. Even if a friend or someone online has had a wonderful experience with a doctor, they still might not be right for you. I saw a doctor about the hip pain who had excellent reviews online, and he proceeded to ignore me and speak to my SO only, to berate me for a fear of needles and being uncertain about a steroid shot, and then to tell me that I was overreacting with my pain. My SO was about ready to kill him when the appointment was over.
Just know that you deserve to be treated well, and you deserve a doctor who will listen to your complaints and take them seriously. If you know something is wrong, then they should take that seriously. You know you better than anyone else.
The previous responses say it all, and I just want to reinforce what they are saying about finding a doctor who will work with you and not just accepting a diagnosis.
At 25, I was diagnosed with MS. In my mid thirties, I became so ill I used a wheelchair and had to go on SS disability. I didn't believe I had MS but I was sick and didn't care. I ended up finally seeing a neurologist who didn't think I had MS but I needed to see a pain clinic. I cannot thank that woman enough although I was upset.
I decided it was all in my head. My primary doctor didn't know what to do but I took my life back; I was 43 at the time. At 47, symptoms returned but they were a bit different. I saw a new primary, and he and I set out to get rid of the MS diagnosis. We never did. The neurologist who had diagnosed me had all patient files hidden; the neurologist who replaced him was sympathetic but couldn't help me, and I had no money for MRIs.
I had an opportunity to move from Wyoming to Florida, never mentioned MS, got a job, got off disability and started to go to an integrative health center (who really helped me), found an orthopedic surgen (also a great help) and then, I found my current rheumatologist. Thus, I was 52 before I had a diagnosis of Sjogren's, lupus, osteoarthritis throughout my body and complete degenerative disk disease top to bottom of my spine.
In the process, I learned a great deal about myself and found a wonderful life in Florida. What is past is past but keep searching. As you can see, you will always find support here. I lurked here since last November and have just begun to post.
I learn something every time I come to this site. Please let us know how you are doing.
I can't stress the importance of what Veej said about APS. Sticky blood can cause mini-strokes and cognitive problems. Has your Dr. ever ordered a Russels Viper Venom Test or RVVT for short?
I think you are heading in the right direction with your research, and I hope you get a referral to a really great Dr. who is willing to run the tests necessary to get this sorted out for you.
Thank you everyone - you are all so kind, I feel like I'm among friends on this site.
Ok, so when I go see my primary - I want to be specific about what blood tests I need to have. So, I've been looking at the stickies, and get confused easily.
Can someone post on this - the exact tests I need to ensure have been done, and if not already done, to get them done. I will write them down and bring with me.
As far as the sticky blood - I'm already at low risk of anuerism (sp?) due to the malformed vein in the brain - so adding clots to the picture really adds a whole other dimension. So, I will ensure that gets looked at too.
When I first started, MS was what they thought - you generally don't die from that, but this Lupus illness can really go bad if not treated. I know its not a death sentence, but the complications are what worry me. Generally not a worrierer, but it certainly changes perspective on life.