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.

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!

Hi, and welcome. Most of us had a hard time getting diagnosed, so we know what you're going through. The not knowing is brutal.

First of all, that thyroid reading needs to be followed up right away by an endocrinologist! Your TSH is low and your free T3 is high. Both of those readings indicate hyperthyroidism. I have Graves' disease myself, and when my TSH goes as low as .02, the doctor puts me on thyroid suppressants. That may look just slightly out of the normal range to you, but it's low enough to diagnose you, I think. (Don't be confused by one number being too low and the other being too high. TSH works backwards: the lower it is, the more thyroid hormone your body is producing. So a combination of a low TSH and high hormone levels means hyperactive thyroid).

Graves' disease (hyperthyroidism) is an autoimmune disease. It can cause eye symptoms like double vision, and it can cause muscle weakness. Other common symptoms are fast heart rate, hair loss, heat intolerance, anxiety and trembling. But a mild case may not produce all these symptoms.

My other advice to you is to see a neurologist who specializes in neuromuscular diseases. I think you should definitely be tested for myasthenia gravis. There is a blood test you can have--it tests specifically for the MG anitbodies. If it comes back positive, you're definitively diagnosed. If it comes back negative, you may or may not have MG. In that case, there is a specialized kind of EMG called a single fiber EMG that is good for diagnosing MG. Only a neurologist who specializes in neuromuscular diseases will be able to do it for you.

I hope you can see a neurologist right away. If you can't find one who specializes in neuromuscular diseases, start with any neurologist.

I hope you get answers soon. Welcome to this forum, and please don't hesitate to ask any questions you might have.

Abby

Wow, I can relate to much of your post. In the interest of saving time, I'll address a couple of things that really spoke to me.

Neck & shoulder pain, trouble sitting, trouble sleeping. For me, these issues were fibromyalgia. I have muscle spasms in my neck, shoulders & back. Sometimes just turning my head to look at something will trigger it. Constant pain, 24/7/over 10 years. Sleeping was terrible as I often had spasms in my sleep and would hardly be able to love to get out of bed. I fortunately came down with a terrible sinus infection that made me have to sleep sitting up or risk coughing my head off. I discovered that my neck & shoulders were better then, so I bought a wedge pillow and now sleep sitting up. Best thing ever! As for sitting, if there is no back or the back is too ridged (think church pew), I absolutely can't sit. Back pain, leg pain, it all happens when sitting like that.

The eyes. For several months my optometrist and opthalmologist assured me my eyes were perfectly healthy but no one could explain the lack of acuity that was not correctable in my right eye, or the peripheral double vision, or the painful eye movements. The eyes WERE healthy and the problem was with the muscles. Go see a neuro-opthalmologist. That was the doctor that got to the bottom of my eye issues and dxd me with MG.

Keep up with the thyroid issue & take Stellatum's advice, go to an endocronologist! My boyfriend had tons of health issues, turned out to be his thyroid. He was rare that he has both Graves disease and Hashimotos. He had it ablated and now takes synthroid and finally feels better than he has in years.

I agree with Kage12 go see a neuro-opthalmologist. He gave me my first DX when my blood panels were negative.
Mike

Thank you guys for responding.

It helps, as long as I've been in this "fog/pain/ etc" I've become lost in my own misery. If that makes any sense.

One of the big things that makes it hard, is the tests I've had done so far have provided zero positive results, so my family -- to be blunt- simply doesn't believe me. They tell me I have nothing wrong with me, it is all in my head, and I need to get on with "life".

Trying to explain that there is something seriously wrong with me that makes everyday very hard just to 'exist' through and my symptoms is next to impossible.

I understand why to some extent, as they just can't relate and are entrained to think well, if a doctor can't find anything then there must NOT be anything.

I answer it with simple logic that just because X tests came back 'normal' doesn't equal a result,.. or in other words -- no number of tests will give an certainty or proof that there is nothing wrong.

Further, the weakness, pain, neurological issues (ie: Vision , memory, general thinking, etc) are to such an extreme and so abnormal to me that while I'm sure I have some depression and anxiety issues as a result of this for so long... it does NOT equate with any mental illness.

My symptoms don't add up to any mental illness. They are too severe to be just clinical depression and the variants of so..

It really bothers a person when the only people that SHOULD be on your side,.. (aka: Immediate family) ,.. isn't, and further insinuates that you are just bold face lieing about being so ill.

You may wonder,.. why is he making such an issue of what anyone thinks? Well, I am a 32 yr old Man. When I was 19yrs old I was 100 times better able to handle the responsibilities of "life" and in general, everything than I am at a time when people have really started to get some real consistency in their lives.

Further, my immediate family has known me, and the type of person I am my entire life. I am one to hold in emotions, to hold in any pain,.. laid back, and never really went to doctors even for checkups. I didn't complain about colds, flu's, or be dramatic in any way about health. Somewhat stoic, and never saw a point in trying to be dramatic like I see some people do to get attention.

Then at age 25 or so I start to express some issues that slowly progress to where I am now. In my head it doesn't make sense that someone who spent 4/5th's of their life not complaining or making any issue about their health suddenly and consistently have such problems.

All in all, there is no 'advantage' of being sick. I'm not going out and having fun , or having any decent quality of life and haven't for years now. In my head it should be obvious that there is a significant problem that keeps a person from even feeling like going out to do 'enjoyable' things. Who doesn't want to have a little 'fun' ?

So at this time I need the aforementioned 'help' from my family with encouragement and helping on finding doctors and so on to figure out just what is going on so it can be treated to some degree. Even if it is MG, or Thyroid problems (or both) -- they can't be cured, but I'm SURE If these exist I can feel some percentage better than I have been.

So I really appreciate the input.

So I basically, at this time, need to see two specialists?

1) An Endocrinologist to further examine Thyroid.

2) A Neurologist for the muscle weakness.

Money is a factor, I do not make much income at the moment because of all of this -- so I have to really pick my docs and visits and spread them apart to afford them. But, with the way every single day is.. I have no greater passion than to actually have someone actually find out what is WRONG with me.

Because once you know, I suspect, you can begin *some* sort of treatment. Further, a diagnosis would likely help my mental and emotional state as I could get out of this loop of self-doubt and questioning what is going on and why.

Thanks.

I wanted to ask you, and everyone who reads this thread.

When I go see a neurologist with my symptom list -- What should I "focus" on as my issue, and reason for seeing him or her?

Overwhelming doctors with dozens of symptoms convolutes the issue and can be a negative sometimes.

So really what should I say to the neurologist? To get things started and headed in the right way, and to be taken seriously?

Because I 'look' fine -- I walk in on my own two legs, etc. So nothing is just blatantly obvious.

The same goes with the Endocrinologist?

My PCP , who is a very good doctor, never followed up with these very marginal thyroid results -- which makes me logically think that being so marginal must indicate that the symptoms I report and severity don't add up. So if a 'good' doctor thinks this already, how do I put it to an endocrinologist to not have the same result happen,.. and ultimately waste money, and time?

If I *could*, or it existed -- I would go to a hospital for the "Mystery Illnesses" and stay there and have them run tests and do whatever they felt like until some answers were found no matter what they were. But there isn't, to my knowledge, any type of doctor who specializes in figuring out what the heck is wrong with someone like myself. .... There should be!

Anyhow, sorry so long.

Thanks again,

For neuro - just take the list of symptoms you described in your first post. Copy it and give it to him. You describe what is happening very well and I think it is has all the info necessary to begin the assessment.

Pls let us know how it goes...and do remember one thing. Neuros, in general, are mostly not known for their conversational talents....many can be quite blunt. Know this going in and try not to be put off by it.

Neofate,

I relate to most of the symptoms you posted, except I have been diagnosed with MG. I also look normal most of the time, but become weak quickly if I do any physical or mental activity beyond the bare minimum (so frustrating!).

I think your list is very descriptive and will be helpful to a neurologist. Be sure to mention the muscle weakness, muscle fatigability and the eye troubles

I'd like to suggest one thing that might help with your symptoms, and that is to try taking Methyl-B12 vitamins (not the regular B12 vitamin). I find that this vitamin does wonders to decrease many of my symptoms especially the mental fog, although it is no cure. There is a lot of posts in this forum about the benefits of methyl B-12 for various health problems, in fact this is where I learned about it, and I am so happy for that.

Happy to meet you. Keep us posted.

I'm glad you can relate (well you know what I mean ) --

What perplexes me a bit is how I can wake up and I am immediately exhausted, and my concentration never 'arrives'. It can get worse, but I hear that MG is characterized by feeling very 'ok' after sleep then degrading as the day goes on. I don't even get close that 'ok' or 'normal' feeling these days. Makes me wonder.

I am so frustrated as I mentioned above MAINLY because I have the most serious debilitating thing going on with me and I nor any doctor, thus far, has been able to figure anything out beyond a low Vit. D level. I don't wish it on myself, I just can't wake up and 'ignore' the way things are -- and how much in a daze, fog, and effected in nearly every conceivable way and there is no end in site with no where to turn. Ultimate frustration. I can accept having a bad roll of the dice getting some sort of disease in my 20's.. but it is hard to be undiagnosed and have no reason to explain your behavior to the rest of the world (including friends and family) and yourself.

Diagnosis is very underrated in conditions that impact function.

Will do -- I just don't want to overwhelm a neurologist with a two page document. Which is why I was trying to ask if you guys had opinions on just what symptoms I should reveal. Because, as I said, I can literally reveal dozens and dozens of specific symptoms.. How can I know which are more important in diagnosis than the other without giving too many and compromising my credibility with the neuro. I've seen first hand how people can be put into a hypochondriac/mental (depression/anxiety) category if they have that many symptoms as it does seem utterly insane and nuts for anyone to have THAT much constantly going on with them.

Methyl-B12 , I will have a look. I've tried ALOT of supplements, generally giving up after 3-4 months on them over the years.. nothing has really done any good. I will try this though.

Is this something that takes effect in hours, or weeks+ ?

Good to meet you as well, and I will do.

Thanks,

Check out the wonderful B12 thread here: http://neurotalk.psychcentral.com/thread85103.html

When I first starting taking B12 it took about a week to notice the effects, but now that I am taking them regularly I notice an effect within an hour usually. I take one every morning before eating but also carry them around in my pocket if I am away from home. If I start feeling weak, I take a second or even third B12 vitamin during the day.

I am no expert in vitamins of course, but have heard that so many others on this forum have great results from this particular vitamin. It is not a cure for MG though, but definitely helpful even if you don't have MG.

About how you feel when you get up, I suspect this is variable with MG. In the past, my best times were in the morning after sleeping, but in recent months I feel best in the evening and weak in the morning. I have a difficult time getting out of bed and it takes me a while to get onto my feet. It might be that I have another issue, maybe with my thyroid but I haven't been to the doctor yet so I don't know.

My double vision is my least favorite thing. Recently I've been lucky only to have only slight double vision. In the past I had such bad double vision that I couldn't even see in front of me, my vision was just a swirl of colors. My vision sometimes shakes the way you described.

The brain fog is miserable. In general my brain fog has improved since taking vitamin B12 (nothing else seems to help the brain fog including the Mestinon I take for the MG). I still get brain fog when I am faced with a stressful situation or even decision to be made, as if my mind is shutting down telling me not to think too hard, I've wondered if it is some kind of protective measure to keep me from getting too stressed.

A diagnosis will certainly help so the doctor can find an appropriate treatment.

I noticed you said you have low vitamin D. Low vitamin D can cause a lot of problems, let me find the forum thread for you. I am no doctor of course, but I suggest taking vitamin D or, even better, be sure to get some sunshine which is the best way to get vitamin D and it is free. I do my best to get sunshine as often as possible and I do think it helps, nothing is a miracle cure for MG though. Vitamin D might help even if you don't have MG.

Here is the vitamin D thread, MrsD has collected some great information.
http://neurotalk.psychcentral.com/thread92116.html

I was thinking about your symptom list. It might be helpful to summarize your symptoms in a simple list. Try to think of a one or two word description for each symptom. It really helps when the doctor's office hands you the form that has only three lines or so to put all your symptoms down on. I don't think you should try to hide any symptoms from the neuro or other doctor, but do be as specific as possible. I do know what you mean about the list...I remember running out of room on the form at the neuro's office when I first went in before my diagnosis. I'd never had so many odd symptoms in my life.

I wish you well.