[Neofate]

Hi guys,

I currently have no diagnosis for what is 'wrong with me'. I have had some sort of slowly progressing neurological disorder since I last moved homes.

I moved in Nov. of 2006, and was 27 at the time. I am now 32, and things have only gotten worse.

I was hoping some of you might be able to give me some tips on where to go, how to proceed, what to say to specialists/doctors to get some answers and so on.

Here is an over view of symptoms. (Keep in mind I find it hard to describe how I feel).

Overall Weakness -- This is my entire body. It feels weak ALL day long, every day.

For instance, holding my neck up (head up) sitting at the computer is something I have to concentrate on and there is muscle pain involved because it is like I am stressing the muscles too much by something that used to always be automatic.

This same muscle weakness applies to the rest of the body but some good examples:

My hands -- Just using the touch pad on a laptop is hard because having to hold my hand just barely up in the air to use the touchpad (go use one if you need an idea ) -- fatigues it very quickly.

If I go use a pump sprayer --something like spraying weeds, or some such.. my hands cannot hold the level together for very long without burning immensely (muscle burn) and tiring out. I'm talking 10-30 seconds .. sometimes worse. It is that muscle, in this case, between your index finger and thumb.

Walking up and down stairs and just moving around in general is much less stable than it ever used to be. I'm not falling down all the time, but it is very apparent (to me) that I am having to concentrate way too hard to just walk about the house normally.

Eyes -- I have double vision .. it is more that my eyes/vision require INTENSE concentration to stay focused on objects, especially close. I'm always wanting to relax them.. which causes everything to go out of focus.. and my left eye does slightly move slower than the right eye.

If you know what convergence and divergence are (when the eyes work together to focus in and out on things..) -- then you will know what I am talking about when I say I have convergence and divergence insufficiency. From what I have video taped a while back.. the left eye lags ever so slightly behind the right. On movement.. but even with this, once locked into focus there shouldn't be an issue *unless* I am just always on the edge of holding that focus due to muscle fatigue and it creates this feeling.

My vision subtly and finely (but rapidly) shakes. Like you would think a strained muscle would do as it quickly spasmed.. but I have been to two optometrists and 1 ophthalmologist to get exams (general) on my eyes..

And since my visual acuity turns out to be that of a fighter pilot (20/6)(20/10) they seem to dismiss any 'functional' visual problems. Just because I can make out all the letters on the chart doesn't mean they aren't shivering back and forth while I'm looking at them.. or that I have double vision, strain, starbursts, halo's and so on.

I suppose the 'best' muscles I have are from the waist down. I do notice weakness in the legs.. but it isn't quite the same as the waist upwards.

For instance I often find myself standing when everyone else is sitting because standing is more comfortable on my body. Sitting is painful and it is just literally not possible to get into a comfortable position for me. I haven't done so in 4-5 years that I can remember. Which makes sleep incredibly hard and so on.

IE: I always wake up in pain across the upper body back/neck/shoulders from sleeping. Just because my weight is on these regions, nothing more so far. I don't know what to make of that.

As for swallowing -- I haven't choked and died yet -- or I wouldn't be here.. -- but for a while now I've had to dip my chin down closer to my chest/throat to swallow. IE: If I leave my head pointed straight forward like you would normally -- swallowing is very hard or impossible. Tilting the head/chin down does something to make it easier.

I can go on of course -- but I will lose everyone' s interest if I do.

As far as doctors so far -- I'm seen two GP's,.. the eye doctors I mentioned, and that is about it.

I have had ANA run a few years ago -- (was negative).

Had TSH for thyroid run -- It was slightly out of range, at .02 (range from .5-5.0) or so. Though I assume that is just close enough to in range to be ok.

I've been tested for the Genetic test for Ankylosing Spondy -- the genetic test came back negative.

Vitamin D levels came back at 14, .. with a range of about 39-100 or so. Quite low on the vitamin D. But with the issues, I don't get much sun. I know low vitamin D over time is bad, but I don't know how much this could affect me.

Had Arthritis (RA) checked, was negative.

Found Thyroid tests:

TSH - 0.2 (.45 - 5.0) ref

Thyroid Stim Immunoglublin 70 % (0-139) ref
Thyroid Peroxidase (TPO) Ab 7 IU/mL (0-34)ref
Antithyroglobulin Ab <20

Triiodothyronine,Free,Serum (T3) -- 4.5 pg/mL (2.0-4.4)

I thought the antibodies were not supposed to be in your body at all from what I read. That the presence of antibodies meant the immune system and thyroid weren't getting along to put it simply. Shrug

EKG - Normal

Cholesterol - High

Avg Temperature - 97.4 degree's

And lastly over the past 6 years (which these tests were done) -- I have had 1 standard MRI. The report says 'normal'.

My chief complaints with the doctor have been mainly Pain in back/neck with headache often. No energy, especially no mental energy (can't focus/concentrate). Vision problems, chronic in nature. I didn't really mention the muscle weakness, or make it a point so far. But I don't know how to quantify it. Because I 'look fine' and I can go lift something sort of heavy once or twice.. so all seems ok.

A last example of the weakness - As I lifted my arm from the keyboard in my lap to get a half inch binder .. It was all I could do to lift it over to me. The main weakness (give out points) were in my wrist/forearm and shoulder. Doesn't make sense.

I'm basically asking for thoughts, and how would you approach and whom would you go to to get some help if you were in my shoes?

I feel like (and am) missing the prime of my life and this isn't some few month ordeal that will just go away.. its been years now. It is incapacitating me.. but there is no obvious evidence by looking at me.. so I'm a tough case. If that makes sense.

You might ask why I'm here -- well I keep circling back around to Myasthenia Gravis with my huge array of symptoms over time. I haven't had this checked out, and it vaguely matches. Perhaps there is something that matches even more, or maybe I'm in the right area.

Your help is greatly appreciated!