My first major symptoms began in February of this year. The first thing that happened to me was that I had stroke like symptoms. It started with a pain behind my left eye, it felt like I was stabbed. It only lasted a few seconds and then I went completely numb on my left side from my cheek to my toes. My face drooped and my speech was slurred. My coworker called for an ambulance and when they arrived my bp was 180 over 90. They rushed me to the ER and they did a CT scan and said everything was fine. They diagnosed me with an optic migraine. That whole weekend I didn't feel right, my left arm felt heavy, it was still numb, my balance was way off to the point I had to hold on to the walls when I walked.
On Monday I was awaked by the worst headache I have ever had. I am used to getting a migraine every couple months around my cycle, but this was completely different. I couldn't lift my head off the pillow without crying in pain and vomiting. My sister took me back to the ER and they said it was a complex migraine, they gave me IV medication and sent me home with vicodin. It finally went away later that evening. I went to work the next day, and about 3 hours into my shift the headache and the left sided numbness all came back. My coworker had me sit down and when she looked and felt my left hand, it was ice cold and my fingers were blue and I was shaking all over.
She called the ambulance and when they got there and checked my BP it was really high again. They took me back to the ER and this time they did an MRI and gave me IV meds and put me on Decadron to shrink the blood vessels. The ER Dr. told me to follow up with a neurologist in the next couple of days, to see if he could find the source of the migraines.
I got an appointment for Friday,and in the meantime, I took the Decadron as directed and my body was jerking out of control. The neuro told me that everthing looked good on the MRI and that I was just having a bad reaction to the steroid and that it would go away in a few days. He gave me a sleeping pill and told me to sleep the weekend away and I should be fine by Monday. When Monday came I was not any better, so I called his office and they told me to give it a few more days and call them back if it wasn't any better. I waited 2 weeks and when I got in to see him he told me he didn't know what it was, but he put me on klonopin and told me that it should take the movements away. Needless to say, that didn't work. This was on February 25.
On March 5, when I got up, I couldn't see out of my right eye. Everything was gray and blurry. I laid back down, and when I got up a couple of hours later, the gray was gone but everything was still blurry. At this point, I had had enough, I told my husband to take me to a different hospital. I told him that if they didn't do something to help me, I was going to commit myself, I felt like I was going crazy. I was admitted as soon as the ER Dr. saw what was going on. He told me that he didn't have any idea of what it was but that it was something neurological. I saw their neurologist the next day and she told me I have some type of movement disorder, but she didn't know what it was, and she referred me to the movement disorder clinic. I spent 5 days in the hospital being pumped full of Ativan to try to get the jerking under control.
I followed up with my regular Dr. at the end of March, and by that time the Ativan had quit working, so he put me on Haldol. The jerking seems to respond better to the Haldol but nothing takes it completely away. He also tested my thyroid due to all of the other symptoms that I have, and he told me that I have alot of the symptoms of MS but due to the fact that I do not have any lesions on my brain he doesn't want to diagnose me with that yet.
I went to my appointment at the movement disorder clinic last week, and she diagnosed my with myclonus and she ordered a bunch of blood tests for me to have done tomorrow. She told me that she is not ruling out MS, but she wants to check me for Lupus before she orders anymore testing due to the fact that I have symptoms of both.
This is basically my list of symptoms:
numbness and pins and needles feeling all over
mottled skin on legs and arms
electric shock like sensations down neck and back
fingers and toes turn blue and white in the cold
dizziness and vertigo esp. in the heat
right sided weakeness
tight banding feeling around my ribs
I think that's about it, the only thing that I can't figure out is how I can be perfectly normal one day, and in less than four months feel like I am completely useless. I went from working 50+ hours a week in January, to having to take medical leave because I can't go more than 4-5 hours without needing a nap. I just hope that the Dr's can find something soon. Limboland is getting to be really frustrating right about now.
Thanks for reading and letting me vent, it does help to know that I'm not the only one that has been through this before.
Ok, I am in NO WAY an expert, but I too have been going to several doctors trying to figure things out. One of the "things" is Lupus. What I do know of Lupus is that if its affecting your CNS, then I "think" you would have more tests come back suggestive of vasculitis. Certainly, something would have shown up on an MRI and blood work to detect clotting and a sed rate would be a good indicator. However, it sounds like you need ANA and Anti DS DNA tests done (along with the general arthritic panel). That would help them make a diagnosis.
I know this is controversial, but have you looked into Lyme Disease or other tick borne stuff? Some of what you describes sounds a lot like that - but not knowing where you live/possible exposure to ticks, it is hard for me to assume anything.
I have the opposite problem. I have blood work that suggests Lupus but NOT ONE symptom. They found it by accident and its driving me crazy. I have weird neuro stuff (twitching and face tingling) they tell me its allergies!!!!
hi toy23 ... if you haven't been welcomed to the board yet then ... welcome.
so sorry to hear that you are having such a hard time - trips to ER
please don't think of yourself as useless - your body needs timeout and the best thing to do is listen and learn to give your body what it needs. hardly a day goes by that i don't nap! i take inspiration from my 4 dogs ... so take it easy. you will see most everybody here has been/is going thru 'dx limboland'
hi jennynj ... it is possible to have positive ANA and no sympotoms there is a % of ppl that never 'develop' lupus symptoms ... like siblings of positive lupus ppl have positive bloodwork but NO other criteria and you need 4 out of the 11 (see sticky posts) so if you have no other symptoms just keep an eye on it but please try not 'worry yourself sick'.
Hi, toy23, and welcome. I'm so sorry to read your post & to see that you have such a full plate to contend with. Since others have covered many points, I'll add only a few small things to what they've written.
Have you seen that rheumatologist yet? When you do, I hope he/she looks at everything in the lupus ballpark, including APS (antiphospholipid syndrome = a blood clotting disorder often seen in lupus patients) and Raynaud's (because you mentioned your hands turning white & blue). At the top of the thread list here, you'll find "sticky posts" ( = permanent informational posts) about both lupus and APS.
Would I be guessing right if I guessed your neurologist has tested to rule out an aneurysm?
I so hope your doctors have already begun to narrow down their thinking! I send you my best wishes---and hugs, too. We'll all be checking for updates. Bye for now, Vee
Thanks everyone for welcoming me and taking the time to respond to my post. I apologize for the length of it, but I just wanted people to understand how this all began.
To answer a couple of questions: my neuro ruled out an aneurysim on my first visit. I have not been to a rhuematologist yet. I live in Pennsylvania, but I have never been tested for Lyme. At this point I have only had my thyroid checked, and they did a CBC the first time I went to the ER.
This is the blood work that the new neuro has ordered:
24 hour urine for copper
I hope that they find something soon, don't get me wrong; I don't want to be sick. I just want an answer as to why all of this is happening to me.
Ok, well it seems like the common blood work to explore autoimmune was done. The ANA and Anti ds dna are "lupus" tests....at least, that's what dr.'s have told me.. I see they did a sed rate, which is good. It will help them see if its CNS vasculitis....although there are more tests to be done, I'm sure. When was this done? It usually takes a week for some of those results to come in.
I think that if a lot of this blood work comes back negative, you should see a Lyme specialist. I would definitely rule out autoimmune FIRST, though.