Hi everyone - I just wanted to share the observation I have made since joining this group and reading everyone's posts here and on other forums. I have said before how sad it makes me to read the struggles some of you have had with just being taken seriously- let alone actually getting a diagnosis! As you all know - I too, have struggled here.

However, from the limited insights into your lives and the lives of others on the forums I have looked at - I have found you all in your own ways to be active, motivated, hard working and doing everything in your power to retain your independence and dignity.

Why can't the Dr's see this? I understand that their consultations can be brief but surely it is logical and perfectly understandable for someone to be anxious and worried about their health with their distressing and worrying symptoms, especially when there are no answers and explanations?! Why are they so quick to label with psychological disorders when they a) have not exhausted all other possibilities and b) frequently acknowledge that there is still so much they don't know!

I understand that there are cases where psychological illness can be the cause of physical symptoms, the brain is a complex and powerful organ! There is absolutely no shame in psychological illness whatsoever so why do Dr's write someone off at that point? Not even interested in treating their symptoms beyond anti-depressants?? And furthermore, as I have read on some posts -not interested in carrying out any further investigations as it seems based on the fact that once psychological illness is on your records it must be the cause of every problem you subsequently have?!

I have never found anyone here to be looking for anything other than their life back - to work, to care for and support your families, to be independent, to exercise and take care of yourselves, to just have the opportunity to enjoy even just a few of the activities you once did! I see no one looking for an excuse to stay in bed all day long and not work? I see no one wanting to surrender their family roles and responsibilities? I see no one wanting to give up and shut the world away? And I certainly see no one enjoying any part of the "attention" this illness or the frequent Dr's visits bring them, no one is looking to be fussed over - we just want to quietly get on with our lives, to be "normal" (and if you're anything like me - never see a bloody Dr again!)

I know we all have our bad days but I have to say, despite everything, we all come back fighting - and I am proud to be one of you.

The strange thing is that most people I know are perfectly capable of judging whether their problems are causes by stress/anxiety/depression/etc. And even the one person I suspected of not being able to turned out to have something 'physical' as well (although I have never seen somebody with a hip problem walk stranger then she did, and every time something 'stressful' happened she walked even stranger. But I don't think they give you a hip replacement as a placebo treatment ).

Almost all women with auto-immune disease I know have been told at some point it was 'psychological'. I don't understand why doctors think women are such labile creatures, on average women are better at understanding their own emotions than man, they talk about it al the time!(maybe that's why doctors think so?)


By the way: I am allowed to keep my 3,4 dap and mestinon, for now. The doctor who first said that I was right to think I may have LEMS and then turned a 180 degrees and said it doesn't even look like that renewed my prescription. He now turned another 90 degrees and said that it looks like LEMS but he doesn't have any proof. He told me that in his experience many people display all the symptoms of a disease after they did much research on the internet, but if you treat them for the disease with medication the effect wears of after a while. Sigh, I didn't develop symptoms after research on the internet, I had these symptoms all the time. And I can prove it too, because every single problem is listed in my medical files. Only: every doctor only listed the symptoms of what they thought was the cause of my trouble
-Sjorgren’s disease: dry eyes, dry mouth, constipation, fatigue, ‘aches’
-Thyroid disease: heavy painful muscles, constipation, fatigue, depression. I have thyroid disease, but I take medication for that, so there is no reason why I should continue to have such problems.
-Depression: constipation, dizziness, heavy painful muscles, fatigue. I did suffer from severe depression, but that went away when I went on thyroid medication
-Addison's disease: fatigue, orthostatic hypotension, depression.
-Mitochondrial disease: constipation, eye disease, hearing trouble, orthostatic hypotension, heavy painful muscles

The only thing that is not listed is muscle weakness, but that is because I didn't realize I have that, since I was a child when it all started, so how am I to know the difference between heavynes/fatigue and weakness? I did describe it correcly and exactly the same way other people with LEMS do, only I didn't use the words 'muscle weakness'.

But when you take all information into account (including the enormous changes of my symptoms over time) there is only one thing left: LEMS and a dominantly inherited disorder which causes my eye and hearing problems. So I'm not really worried about the wearing of of the effect of the medication. And the doctor also told me that there is only one thing that reacts to DAP: LEMS (+ placebo effect if I am 'crazy' of course, but he is kind enough to let me discover by myself I am 'crazy' ).

I don't mean anything mean by 'crazy' by the way, in my opinion psychiatric diseases are diseases like any other. But I think it is really cruel to label someone like that if he/she doesn't have a psychiatric disorder. Because someone with a psychiatric problem can work on that with medication and therapies, but someone who is wrongly diagnosed, can do nothing to solve the problem (and is left with accusations of not 'willing' to address the problem as a bonus)

W-O-W

I've been going through this quagmire for eleven years and during that time I applied for Social Security for the first time. I went through all the tests and at the end spoke with a psychiatrist. I told him with sobbing tears about my childhood of abuse, and I left the building. He followed me to my car and told me that he thought I needed some counseling and that he didn't think my symptoms were psychological. He seemed to believe my symptoms were caused by something environmental. My Neurologist says that my issues are psychological. The point is that the body doctors think that my illness is in my mind and the mind doctor think it's in my body. Just because a doctor can't figure it out, doesn't mean the problem doesn't exist.

Well, Quandry, look at this. Good for you! When one is having difficulty getting a diagnosis, agreeing to see a psychiatrist is an intelligent move, and carrying on with one, even better.

A psychiatrist is a doctor of medicine; a psychologist is not. Psychiatrists are supposed to keep up with the diagnostic part of their practise for the very reason you stated--he believes you, Quandry. What discipline in medicine would see more unusual, or inexplicable symptoms, than a psychiatrist, given the mind and body connection? Whether we have a cold, the flu, or a major diagnosis, every one on this planet can have non-organic symptoms.

Further, some physicians will ask a patient to go to a psychiatrist for this very reason. It would be my wish that doctors would tell the patient what they are up to! There have been three (to my knowledge) myasthenics in my region, diagnosed by a psychiatrist.

Quandry, your post just helped a whole bunch of people! Thank you!