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Post by georger on Sept 17, 2007 1:55:33 GMT
If you've been through the medical system in getting a diagnosis of TAM, let alone getting treatment, then you've probably had the run around big time and had your sanity questioned. This thread is to share funny, silly, stupid and odd things that have been said to you by doctors and others. A few from me to start it off. Those of you with a gift for humour will be able to do much better than this.
A neurologist told me that everyone with unusual rare muscle symptoms is nuts, "You've only got to look at them". (Most psychiatrists would envy that diagnostic skill.) The only exception was one of his patients who woke up one morning and his crippling symptoms were gone. (He was the sane one apparently, all the rest of us are nuts.)
Me: "I am very happy with my life".
An acquaintance: "You must have very low standards".
My first diagnosis was fibromyalgia. When this obviously did not fit, what did they call it? Atypical fibromyalgia! What's so hard about diagnosis?
My former general practitioner, "What is it you've got again?" "What do you take for it?"
Me: (a bit dejected at TAM's slow response to treatment) "What we are doing is just bandaids."
My excellent physiotherapist: "Yes, but they are BIG BANDAIDS."
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Post by georger on Sept 21, 2007 23:48:18 GMT
Here's another:
An acquaintance (on hearing my symptoms and before I had a diagnosis), "That sounds like amyloidosis, a friend of ours died of that last year."
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Post by Craig Lane on Oct 24, 2007 15:04:34 GMT
After an exercise ECG test. (9mins on a treadmill). I was almost collapsed with the lack of breath and shaking as my muscles spasmed and ached. The consultant told me " You're just out of condition".........
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Post by Craig Lane on Oct 24, 2007 15:07:54 GMT
I wear dark glasses 90% of the time as normal daylight hurts my eyes and gives me a headache. My GP told me she was very surprised that they found something wrong as people with tinted glasses are normally lead swingers!
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Post by erector55 on Apr 1, 2008 2:59:04 GMT
In the last 6 months I have been diagnosed with TAM by a muscle biopsy. I have found that it started around 2002. It seems to slowly but progressively get worse. Does anyone have any information on what I can expect for the future? How bad can or will it progress. It constantly hurts. Muscles get much worse with use. I'd like to be able to plan my life around what I can expect for the future. I just started taking Verapamil. I see no change as of yet.
I would just like to know where I stand.
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Post by georger on Apr 2, 2008 3:32:41 GMT
Hi erector55 Sorry, there are no easy answers to your questions, just generalities. TAM is so variable that our experience may differ widely from yours. You have 6 years experience of your own TAM and that is the best indication. As you say TAM is often slowly progressive, but treatment can reverse that. The good news is that TAM is not going to kill you, just make you miserable if you let it. Verapamil took a long time to work for me (months) and most improvement came at the max dose that my doc would allow 360mg/day, so keep at it. Overexercise seems to do some kind of muscle damage, so take it easy; easier said than done, I know. See www.tubularaggregatemyopathy.info particularly about treatment. Also have a look at the rest of the forum; this thread is really for sick humour. Keep in touch, your experiences particularly with verapamil will help the rest of us. Cheers, George |
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Post by georger on Aug 17, 2008 2:15:38 GMT
An old school friend, recently met up with again, "Myopathy? Is that the one where you imagine it?"
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Post by Pete on Jul 3, 2009 1:24:16 GMT
Nicky the physiotherapist: "You are extremely deviated".
Actually she was referring to my posture not my character but that's not how it came out.
I used to need a very wide car parking space because of my wheelchair. If I could not get a space for disabled drivers I used to take up 2 ordinary spaces, parking right across the dividing line. Once I was parked like this and a bloke walked past looking at me with a grin on his face. I said "I suppose you are wondering why I am parked like this?" He replied in a very strong French accent "Oh no, that's just what everyone does here." So that's what others think of Australian drivers!
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Post by georger on Apr 9, 2012 23:32:27 GMT
We wheelchair users cannot go to heaven. Apparently there's only a stairway.
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