Thanks Annie,.. very informative reply.

I've 'self-examined' alot, in fact, likely *too* much as I am analytical by nature. So I have researched for years what "It could be".. and have a general interest in science, and as a sub factor medicine. So have a great deal of knowledge on the human body, chemistry, biology, and disease. That said, the more I learn the more I understand the more I don't know.. and to take that a little further the more I personally understand even a specialized doctor is just a tool. Unlike many people I realize doctors don't *know all*, simply because the amount of knowledge to 'know' and then on top of that know intimately is literally limitless. Even broken down into a specialty it is still too vast to have a golden grip on anything. Don't misunderstand me, I believe doctors are valuable tools, but I also think we must self-advocate and a large part of that is using our own brains to understand what may be going on with us.

I not only have a belief, but I know there are many people with better understandings of specific diseases than the specialists they are seeing. On the other side, there are many people who don't believe they can *understand* complicated medical jargon and thus don't attempt to learn and pin their short and longterm prognosis on very few doctors. The attitude of , "Well the doctor said X , why should I believe anything else.. he/she is the one who went to school for this." Or similar, is logical,.. but ultimately flawed. My opinion is not of cynicism, or jade. It is merely the result of experience and taking logic a few steps further.

Ultimately it means little in the overall process -- but it is good to understand for ones own 'hope',.. and equally important our desire to press on and get 2nd, 3rd, or more opinions and clarification in somewhat complex symptomatology we possess with disease process such as myasthenia gravis.



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I do believe I have ptosis , more notable on my left eye than the right. Though with MG it seems to be a condition of very obvious worsening of all symptoms after 'doing'. It is a disease of fatigue. With this I am not personally convinced I have it. I feel terrible from the second I wake up all throughout the day. I do feel worse at times, going from bad to worse.. but really for no discernible reason(s). Though also I can't get over just sitting in a chair, lately, and feeling my abdominal muscles 'give out'.. or feel like I just did thousands of crunches and they just can't hold me up. So I have to hunch over to take the load off them and my back muscles. Trouble is, this puts all the load on my spine.. which may or may not be responsible for my neck and back pain. Xrays so far , 2 sets, 2 doctors, revealed nothing to them. I know not only is this a very low resolution image, but being only quickly scanned over by "General practitioners" is not exactly the optimal method of diagnoses. That said, it is better than an obvious deformity from disease pathology .. ie: Arthritis, or other autoimmune processes.

I'm sure I do have a worsening of my 'brain fog' after specific activity,.. though it is hard to gauge. As I said things have evolved into a constant state.. not really a "Hey, I feel pretty normal today, or now.. then later.. oh man I feel bad.". I seem to have more periods of weeks or months of severity and then a *not as bad* period.. but still far from acceptable.

I've been to two optometrists , and 1 ophthalmologist -- so a little too late on the seeing an inappropriate doctor. As for the eyes, I do think, at least, I have some issue from the cornea outward -- at the worst, a dystrophy of the cornea that does not involve thinning, but disrupts the membrane obscuring vision -- to at "best" a dry eye condition. As for the movement of vision I just can't explain it away, or make sense of it -- other than either physical movement of the eyes of a microscopic genre, or a vestibular/ocular issue.

I may see a neuro-ophthalmologist in the future, but finding the right doctor is tough after seeing quite a few in the same 'field'.

As for photos.. I have plenty of them, but haven't specifically taken them right upon waking, then later in the day and labeled them.

I do recall when I was in the hospital for a few weeks with a very unrelated acute kidney problem (a one off).. and after my body had recovered fully and I came home.. everyone said I looked "peeked".

I had no idea what that word meant.. and when I asked they pointed to my eyes and apparently it is when the eyelids droop a great deal over both eyes. I noticed it very much in the mirror and it was the same morning or night. The point to this observation was my eyelids were really drooping after the hospital stay and now have gone back to my 'normal'. I thought of the temporary dialysis sessions I had there, and how weak I felt.. and thought of the blood disorder MG is and thought they , perhaps, could be related. Not sure. (Again, this was an acute kidney problem that does not effect my current or future health,.. and is not related to any of my symptoms.)

Yes, as far as *I* know the RA and B27 genetic test were negative. I do believe I would have been treated if they were not. I understand about the AS,.. a large percentage of the population tests positive for the gene, but very few get it. Since I tested negative, I assume the doctor took that as enough to 'rule it out'. When in fact it is a little dangerous to rule out completely with unresolved clinical presentation. Though, with a myriad of symptoms without positive results one cannot hold onto everything.

With all of this, something is causing my pain, something my weakness, my cognitive problems, vision, and so on. I believe that much of it is likely systemic.. I think it is much more likely that one disease process is creating multiple symptoms than a host of 4-6 different diseases causing all separate symptoms. Just unknown right now.

I have not had any consideration for MG by any doctor. I have just personally learned of it.. and muscle weakness has not been a chief complaint - so I don't think I have signaled any doctor to key in on this specific possibility. This doesn't mean I haven't had muscle weakness for a while.. just that I tend to be a bit stoic by nature, and other symptoms become more bothersome to 'me'.. such as the vision, mental changes, and the pain. I have a hard enough time with those several symptoms trying to condense their symptomatology into a few minutes rather than include every daily symptom to the doctor. I wish a good doctor would take a written list of symptoms from me and research it himself, combined with his experience and med school (perhaps consultation with colleagues) may find a few strong candidates to follow up on.

I just don't think the common 10 minutes of time every 6 weeks (or more) is enough to form a solid diagnosis. Though I have yet to find a good solid doctor who gives patients a big chunk of time if needed. It just isn't the nature of the beast, unfortunately. I think most people with specific single complaints or just routine checkups get by fine with this amount of time.. but the more 'rare' patient with life altering symptomatology needs a good bit of time set aside. The cost surely justify's it. -- An issue that does not have an answer on this forum.. but still is difficult for many to contend with.


You have. Thanks again.

And.. yes, no doctor, imo, likes patients who think they know what the problem is. They don't like people who have spent time researching illness, and so on. I can understand why in many cases (even my own I'm sure), where the research leads to at least unnecessary worry, and at most causes the 'visits' to be less productive. I understand sort of 'fishing' for questioning to not insult the doctor and allow them to think they came up with the diagnosis to 'test' or check on. Reporting specific symptoms that likely would clue any competent physician in on MG, or other problems is not terribly difficult. (If in fact, they are real.. ) -- I actually am very 'good' at doctors and do not over step my bounds, and likely am a bit reserved and have room to push a bit harder without overstepping bounds.

I just try to give symptoms and not 'lead' them .. to see where they go with things.. because as I mentioned earlier.. no one can think of them all or can possibly have a good grasp on ALL things possible. If I feel my worries are not being considered at another visit I will likely change the approach.

Example: With my GP, over half a dozen visits I presented more and more symptoms as to not overwhelm him on the first visit with a dozen symptoms. I didn't want to come across as a hypochondriac , obsessive, or any other thought. Illness can easily be dismissed on grounds of some psychosomatic, or psychiatric (same thing) grounds if someone mentions a horde of symptoms.. even if they are ALL true. The rare, or uncommon just is hard to believe right off the bat with someone who isn't bleeding from the eyes, or have yellow eyes and skin, etc. (IE: Overtly obvious signs without questioning).

I am weak, and feel as if I have times of breathing difficulty -- but overall the breathing, I don't believe, is a problem. If I thought I was at danger of needing emergency care, I would seek it. I actually don't completely think a bit more obvious and serious signs are entirely a bad thing. The 'optimistic' view on something a bit more severe is that it would be undeniable and very likely a strong queue to lead to a diagnosis. Not that I wish anything on myself.. just if something did occur maybe some answers could be had is all.

I take klonopin (clonazepam) for insomnia that I have been taking since I was 19 yrs old. I am 31 now. I was given a dose of 3mg at about age 20.. and at my last visit with my current GP, we decided to wean me off of it to see if it had effect on my cognitive problems. I have weaned from 3 to 1 mg daily now. Other than increased anxiety ( which is very expected with such a medicines long term withdrawal).. I don't think anything else is happening. As for it causing anything.. it certainly didn't for at least 5-6 years.. so it isn't a likely candidate. Though I am still not ruling it out, which is why I am discontinuing it. Other than this, nothing else.

A neurologist is definitely in my mind now, more than before. There are a great deal of specialists out there, and it is hard to see them all for many reasons. So trying to narrow down who to see and who first with such a myriad of overlapping symptoms is part of what I'm after.

Other than the symptoms, I am having a hard time dealing with my family thinking this is psychosomatic, or mostly such.. some more than others -- I have no history of chronic illness that is caused by psychosomatic symptoms.. but their belief is merely a result of somewhat long term seeking of a diagnosis without much in the way of results. So if after so long no one knows what is wrong, there is nothing wrong. (Obviously difficult for anyone who has to live with the problem(s) to live with..) When it is your family it is hard to just 'not care'.. or 'ignore' what they think. You don't want to write them off.. So things have largely come to just not discussing anything regarding it with them.. but symptoms have their limitations, etc.

Anyhow, I thank you.. and just wish there was an easy way to really be confident in having or not having MG before seeing a doctor to diagnose and treat. The only test I've read about it using cold for ptosis to see if it makes any changes. Anything else ? Neurologists are bound to do some physical tests that we could do ourselves to get a general idea?

Take care,