Posted 4/30/2013 2:17 PM (GMT -7)
I'm sure you get sick of posts like this, but I'm really scared and would like to know your thoughts about what has been going on with me. I've been through heck and back over the last 3 months and I don't fit into any nice little box that makes me for sure of what I have going on.
With the advantage of hind-sight I'm going to back up to the first thing I now know is related to what is going on. Probably 2 years ago I started to notice I would have limb jerks when I was laying in bed at night or in the morning. Not violent...just the whole limb would jump a little. Maybe once a week or every 2 weeks...maybe even less frequently than that. I didn't pay much attention to it.
Then, last October I noticed my eyes and mouth were very dry. I went to the doctor and he tested me for things like Sjogrens, ANA for autoimmune, full blood work up, etc...everything came back normal.
Probably around December I started to notice that my muscles were more fatigued just doing regular stuff...but it wasnt that bad at that point. Just occasionally I would notice it. I also started to notice I had bad dandruff and my hair seems to be breaking off around my face. I got nicer, more expensive shampoo and thought I just wasn't taking care of my scalp enough.
In January, I had 2 episodes of dizziness, not related to standing up (I've read a lot about orthostatic hypertension and I dont think thats what this is).
Fast forward to Feb 16th - my right leg ached that Saturday and Sunday..not tight...just an ache. Then all hell broke loose that Monday. I was having numbess and tingling and cold patches that were migrating all over my body. I called my doc and he ordered an MRI looking for possible MS. It was normal. He referred me to a Neurologist and a Rheumatologist. Been to both twice now. Before my appointments, I started twitching in my muscles...individual muslces would pull to one side, all over my body. Started pretty much all at once. face, eyes, arms, legs, stomach, everywhere. I started to have crazy muscles fatigue at that point....fumbling in my purse, walking up a flight of stairs, hunching down to get something out of a lower cabinet. Felt like I'd run a marathon. Of course I thought it was "weakness" and when I looked that up with twitches I came across ALS. Set in more anxiety and fear...(in addition to the anxiety and fear over MS, Autoimmune diseases, pulmonary hypertension, etc.) I know I sound like a basket case, but I didn't have this prior to all of this happening. That is why I'm having a hard time believing this is all anxiety.
I also started to have a fatigued face when I would smile or chew alot it just felt like I'd been smiling for 10 minutes.
The neurologist said a virus that had inflamed my immune response and it would quiet down. The Rhuematologist disagreed and said all my markers for inflammation came back negative (like c-reactive protein, ANA, rheumatoid factor, etc) and they would have been positive if this was all caused by inflammation. He thought it was Fibromyalgia and said it could account for all my symptoms of dry eyes, mouth, dizziness, just feeling "off" in my brain, twitches, limb movements, and occasional achiness in arms and legs. Problem is...I don't have a ton of pain. Just sometimes in a few muscles...some headaches in the temple region.
Now, because of my facial muscles, I have TMJ going on and eating is painful and my teeth don't fit together all the time. I feel like I have to stretch my face a lot. It gets better overnight...I guess cause my face relaxes and lets the joints realign.
Anyway...thanks for listening to all this and I guess I have a couple of questions. Can all of these symtpoms hit all over your body full-force in a couple of weeks? Does Parkinson's "flare-up" like that? From what I'm reading everywhere...its no. But my symptoms sure sound like it ....but they sound like a lot of things. I've been tested for Lyme, vitamin deficiencies, heavy metals, had an EMG done...and NCT, cardiac stress test, echocardiogram, Thyroid, ...you name it...I"ve had it. They also did Vestibular testing where they move a floor around and try and make you off-balance and I passed that too. And they have all been normal. I've spent thousands of dollars and am in debt with no more answers than when I started (I know what I DONT have...not what I do have).
Honestly, some of the things have improved...the thinking is better a little, less dizziness, no walking or gait issues, no tremors, no stiffness anywhere else I can think of...no arm swinging issues. I have had a little bit of achiness in my calves when I'm out taking a walk...and I try and do that every night...but besides that nothing. My doc started me on 10 mg of Celexa which I just upped to 20 mg. But from what Im reading...they try and blame everything on anxiety when they don't really know what it is. My twitches and limb movements have gotten worse over the last few weeks...would'nt taking Celexa make that better if it was what was causing this?
Any thoughts on the presentation of this illness...I obviously don't want to have PD (my Mother in law has it and has had a horrible time of it)...but I also don't want to keep thinking I have Fibro or anxiety and miss a serious illness that needs treatment. I also am SO much in debt that my husband is getting impatient that I want to go to another doctor and not just accept what the first have said. I'm a 37 year old mom of 4...the youngest is 1 year old so I need all the energy I can get. Help! I know you aren't doctors and you can't see me...but I've tried Googling any way I can think of for "sudden onset PD" and I'm not finding the answers I need. Prior to Feb 18th, I felt great except for those limb movements that were very few and far between. I've also read that usually one side of the body is affected first...mine is in every muscle equally at once...including the face. Also...does stiffness with PD get better at night so you wake up with your muscles relaxed in the morning? How does your brain know its night or not...wouldn't they stay tight whether it was night or day? Anyway...enough now.
Anything that is so kind to read all this...thank you very much and again, I'm sorry for the super long post. Its been a super long 3 exhausting, emotional months.