Not quite sure what forum to put this in...

But I figured this one was better than none.

I am having some issues that the drs either brush off, are puzzled or throw meds at me.

My latest "issue" is a twitching of my hand and fingers (right side). I have tried to place it in different positions, and there is still jerking and twitching. It is annoying when I am using my touch pad because it makes me click on things inadvertently. The other night, I was twitching in more places than my hand (I think - I was half asleep) and I did wake myself up with a huge full body jerk. This is after what looked like a visual seizure (I have had them as a side effect of some medication before, but I have not taken that med in months). I have an appointment set up with my neuro on Thursday, but I have already called her office and let her know what is going on.

Other issues I am having are sore joints (especially in my hands, neck and toes), swollen ankles and fingers (not too bad, but I can dent them with my finger), severe brain fog (this is beyond normal forgetfulness), chronic sinusitis (probably caused by the deviated septum and the bone spur), migraines (ENT thinks these may be related to the bone spur too), Eye issues (had weakness in my retina and near detachment that I had surgery to fix a few months ago), my ears started ringing several months ago and never stopped and has several different types of ringing (the other ENT told me to just get used to it), I am losing hair not only on my head (in a regular pattern), but also on other parts of my body (falling out in circular patches), hair is like straw (I never had a problem with split ends before), bad neck pain at times (had to go to physical therapy for it), joints always are cracking and moving, hyperpigmentation (self diagnosis) on my face - specifically my upper cheeks (I can understand that people get this as they age, but there are a lot of them, and they all appeared over a month or two. I am still getting them popping up, and they only are on my cheeks and nose), weight gain (I do not know why), dry eyes, a circular rash on my shoulder (went away with hydrocortozone 2%), fatigue (was worse a couple months ago, but still is pretty bad), and intestinal issues.

I don't even know if that is everything. Oh, my hip just reminded me that there is at least one more thing. It hurts like mad sometimes. The one thing the Rhumy that I went to told me, I am not sure that I have. He said I have Ehlers-Danlos Syndrome (type 3, or hypermobility). Sometimes I think I have this and sometimes I don't. I just don't know. I am getting a second opinion in July.

I have had bloodwork done. A lot of bloodwork, but I am not sure exactly which ones. I do know they did two lupus panels, all were negative, and other tests (I actually have the individual test results on a paper somewhere. There was one test that came back positive, and that was my ANA. It was 1:320 with a homogeneous pattern. As far as I know, I was fighting a sinus infection that day. I have had two MRIs on my brain (all fine) and one of my neck (okay, but out of place vertebrae and something else), and recently a CT scan of my sinuses. I don't know the result on that one.

I am currently on Augmenten, Neurontin, propanalol, Vitimen D (50k units weekly), and B-12 (monthly injections). I can't even remember if that is everything. My thinking is that off. It bothers me.


Has anyone here had anything similar with them? This hand twitching is as annoying as anything.

edit: Sorry I forgot to add that I had my thyroid checked and it looked good.

Post Edited (SoSt9) : 6/19/2012 12:04:00 PM (GMT-6)

Kaely, but moral support is important. Thank you. :)

No one in my family is diagnosed with ED, and I can't think of anyone who may have never been diagnosed. I can't think of anyone. I am going to ask my new rhumy for a test if he is able to do it. I just don't feel right with this particular diagnosis.

Post Edited (SoSt9) : 6/19/2012 12:35:08 PM (GMT-6)

My neurologist is great, but I think she is checking for the more obvious things first (not that Parkensin's is not obvious) I will mention it when I see her next, but I am also afraid that she and my other docs are going to think I am a hypochondriac. The neuro is great though. She lets me sit in the room and chat. She is very curious why these things are going on.

Thanks for suggesting the fibro 101 topic. I fit a little over half of those symptoms. That's scary. My problem is that my drs are all trying to rule out different things like Lupus and MS. It is pretty much a waiting game, I think.

Thanks Deepwell. Lupus was the first thing that they were considering, but since all the "tests" have come back negative, the Rheumatologist I was seeing flat out said that I don't have it. From what I read (and I called him on it), tests don't always say everything. I am going to go to someone who hopefully will look at the big picture, and not just (not even) one of the 11 criteria for diagnosis (I have four already).

The marks (I hesitate to call them a rash) on my face are in the butterfly pattern, but since the marks are not red or pink (they are a tan, or freckled colored color), I hesitate to say that's what it is. The pattern (if they were pink) does fall in that area though. I do have a light (almost a very light blush) pink area that also falls within the butterfly rash area, but no dr will look at it. They all dismiss it. It is irritating. For me, I do not want someone to say that I have x, y or z. I want someone to tell me what is going on with me, and I want the answer to make sense.

Post Edited (SoSt9) : 6/19/2012 5:35:07 PM (GMT-6)

It's good not to ignore any new/different symptoms cause they can surely be unrelated to Fibro, but with that being said, I know there are a heck of a lot of weird things that can go on with us.

I had my pinkie twitching and my lower eyelid twitching for months. I get full body jerks that sometimes hurt, I jerk so badly. Usually for me though that happens right before I'm going to fall asleep. I can't tell you how many drinks I've spilled on myself.

I wish I could help with all of the things you mentioned. I just know that Fibro can have some weird symptoms.
BTW - my thyroid tests came back normal too, but because of symptoms my Dr. put me on meds. (hair was falling out and very dry)

Hope you get some answers and peace of mind...soon!

I can only imagine how frustrating the not knowing is. We have all been in various stages of that with having fibro and our other issues.
I noticed that you are taking Neurontin, I, too, am taking that. When I began having twitches and full body jerks, my rheumy lowered my dosage, and the twitches and jerks are gone. They would be so bad that I would wake up my husband...and the dog ...lol
Just a thought..