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Biomarker for Diffuse Scleroderma skin has been discovered!


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Seasons of loss

But there is a gain

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#21 judyt

judyt

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Posted 09 November 2011 - 05:18 PM

Hello Shelley

I have just read your latest post on this thread and had a little giggle. I have a cousin who is in a wheelchair, she has post polio syndrome which comes on in later life very much like Motor Neurone Disease. Anyway I have always been quite happy to go out with her - until lately, I don't think I could even push her chair now - and we have had lots of fun over the years. I have always been very good at taking her into shops where there are things we want to look at, usually clothes as you can imagine. Some shops have no idea how hard it is to get around their displays until yours truly bowls down the aisle with the chair and boomp, boomp, boomp go the goods. Well, they should think about what they are doing when they set them up shouldn't they!!!!

I also understand how Gene feels when you go plop down in the aisle. My husband Ian is very good at fainting (syncope) at the drop of a hat. I react the same way as Gene - Oh don't worry he often does that!!!! Trouble is people often call an ambulance then we are hooked into the whole hospital visit thing. It was great one time when he fainted on an aircraft half way between Auckland and Brisbane. We were en route from NZ to Sweden at the time and all the time we were with Qantas we got right royal treatment, then once we left Singapore with Alitalia they couldn't care less!!! But it was fun while it lasted.

I have an appointment tomorrow with my general practitioner, I am still on this step by step programme back to getting on the right meds and the headaches are driving me crazy. She (GP) doesn't really want to see me yet, it is too soon after the last step in my meds, but I had such a terrible weekend that I just want her to know about it!! I took 5 doses of Migraine med. which knocks me around. Then on Sunday evening when we were waiting in a cafe for a meal I was caught by the most violent vertigo and just had to sit tight with my eyes closed and try to decide whether I was going to throw up or fall over. Needless to say the staff in the cafe packed our meals in takeaway boxes and ushered us out double quick.

I don't really think I have Orthostatic whatsit, even though I often have to sit down. I have never fainted or passed out in any way and when I have tested my BP while I am feeling weak it is often actually high not low so go figure. I have been thinking about it quite a bit since we last talked about it and I think it is just ME. The tilt table test sounds a bit like the test they use for BPV (benign positional vertigo) I know I get it but nobody has been able to bring it on in a test.

AH well!

Nice to hear from you.
I will see how I go.

Judy