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Date Joined Jul 2006
Total Posts : 95
Posted 6/1/2007 11:34 PM (GMT -6)
Finally got the letter I had been waiting for. I have posted this in StacieC's post so I cheated and copied pasted and edited it. Won't need to type it twice!
I decided not to go to my GP until she had the paperwork which she should now have. I just couldn't be bothered with all the fuss if the paperwork wasn't there already. I will now be very interested to see what he sent to her! I really had my fingers crossed...THIS TIME he would be able to give me an answer as to WHAT the problem is or tell me what to do next?
(I let out a deep.....long......sigh,
open the letter and...)
I quote his words here:
" I am glad to report that the MRI shows no changes since your previous scan 1 year ago. In particular there was no evidence of gadolinium enhancing lesions and no T2 lesions which would suggest that your disease is not currently active. I hope this is of some reassurance."
My reaction.........WHAT? WHAT IS NOT ACTIVE???
YOU'VE GOT TO BE KIDDING, RIGHT? I AM READY TO RUN DOWN THE STREET SCREAMING AT THE TOP OF MY VOICE, STAMP MY FEET AND GO CRAZY........aaahhhhh#####!!! WHAT DISEASE DO I HAVE? What do you mean by "INACTIVE?" Is it MS? Is it my high BP? Come on you wizz bang professor, who is SUPPOSED to be the guru of Neurology, have a stab at it for goodness sake. So, now he has bestowed his wisdom upon my condition, what am I supposed to do about
all these life altering symptoms? It looks like back to square one! Oh, well here we go again...back to the GP for more referrals and plead for some help and then gather up my MRI scans and take them next week to my appointment at the hospital for a second opinion.
MORE FRUSTRATION, MORE TESTS, MORE SPECIALISTS. Is it any wonder we feel this way. Is it any wonder us Limbo Land travelers are suffering from anxiety, depression, mood swings? Please give me something, anything to get some relief from the pain and treat these awful symptoms in the meantime. No such luck there, I could very well end up in a mental institution if they can't sort this out. I am keen to go to a psychologist to help me manage all of this as I am not sure how much longer I can cope without some sort of emotional and practical support.
When I had my first MRI, this was done because I had (and still do) severe chronic neuralgia in the left side of my face. I had noticed some other symptoms which I told him about
. Dropping things, pins and needles in my feet and legs arms and hands, chronic fatigue, short term memory loss amongst other things. I didn't for a minute think the test would come back with lots of scattered T2 lesions all over my brain and a 12mm lesion in my right frontal cortex. When he wrote to me after that was done with the results, he went into detail about
what they had found and then stated : "It would appear that these lesions would be most UNLIKELY to be the cause of the pain in the "RIGHT SIDE OF YOUR FACE"
This is an Associate Professor of Neurology for goodness sake, wouldn't you think he would take a bit more notice of what I told him? He couldn't even get that right! "LEFT" side of my face you dope, not the RIGHT!
When I saw him in February he seemed quite flippant and when I tried to tell him my symptoms I really don't think he was listening. Don't you just hate that? They sit there writing stuff down but you don't know what and here you are trying to tell them what you have noticed change (if you can remember at the time!) I give up, what are you supposed to do? Now"whatever it is" has been diagnosed as INACTIVE? I wasn't aware that you could switch your blood pressure on and off....active....inactive, so I really don't think it has anything what so ever to do with my symptoms, the BP I mean. I am on lots of medication for that but it is probably worse now than what it ever was. I guess they will put that down to anxiety, stress, depression. I had a bit of an episode earlier this week, very similar to the one I had while I was in hospital with chronic dermatitis at the start of limbo land central caused by a blood pressure medication. Took forever to get that under control, I've never been so itchy!
While in hospital they thought I was having a heart attack. Palpitations, irregular heartbeat, my left leg going ice cold, short of breath, pain in my chest.
As I had gone through this before I didn't panic but was thinking maybe I should call an Ambulance a couple of times. Then I thought no, probably a waste of time, it would end up in the too hard basket they would kick me out and I would have to find my own way home. (I live a long way from the hospital)
It hasn't come back thank goodness but if it happens again I think I will call the Ambo's for a free ride just in case there is something not right there. I will report it to the Hypertension clinic next week.
How is everyone else going with their diagnosis? This is just so frustrating!
I have definitely booked a seat on the Limbo Land Express with all my other Limbo Land fellow travellers, lets get out of here and have some fun! One way ticket and no going back! Oh, and make that first class thanks!
Catch you all later, toot toot!
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Date Joined Mar 2007
Total Posts : 900
Posted 7/3/2007 1:13 AM (GMT -6)
I can so relate to you Cocoa,
I have been waiting 4 years for another major "episode". Meantime I've gone from being to walk normally, to having an unsteady gait from vertigo and leg spasms, to not being able to walk one block because my legs give out, to having to use one crutch, then two crutches to prevent falls ( in the middle of intersections no less), to having to use a scooter to get around.,and probably being house bound without it. The scooter is my life line in more ways than one. It gets me around because my legs won't carry me...but I also suffer from Crohn's Disease so "sitting" on a scooter is so often a real blessing when I know darn well, if I had to "run" to the nearest bathroom , I'd be doomed. !
Hang in there Cocoa.....there is light at the end of the tunnel. The tunnel may be excessively long but the good people here at Healing Well are great at holding up a flashlight until we can see our way through!
Love and prayers,
Mary aka tired old Mary aka Marie-Claire
50 yr.old retired RN,
Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
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