Firstly, thank you to everyone who showed me so much support over the last 24 hours. I won’t say more than that except to say I have slept on it, am now in a better frame on mind and less upset and so will hold my head high and resume normal service. Thank you all very much. Those of you know who you are and we need say no more than that
As some of you know I was in hospital recently with Pulmonary Embolisims and because I have always had an “atypical” MRI this led to my being investigated for Antiphospholipid Syndrome (also known as Hughe’s Syndrome). I had a new MRI done as part of this investigation and, blow me down, for the first time in 9 years my MRI has come back showing absolutely classic MS lesions and so the neuros have confirmed, yet again, that, yes, I DO have MS. Damn, there goes my get out of jail, if not free, card at least on parole
I am still waiting for the final results of the blood tests for the Antiphospholipid Syndrome as it is possible that I have both MS and Hughes but the general feeling now from the doctors is that because I had such severe pneumonia a few months ago with bleeding in my lungs and severe inflammation, the blood clots actually originated in my lungs as a result.
And just to top off what has been an absolutley revolting year I missed the door way the other day and crashed into the door frame and somehow managed to dislocate my shoulder in the process. You wouldn’t think doing the MS ricochet walk would result in so much damage but I have torn the tendon in four places, ripped the tendon from the bone taking particles of bone with it and torn the cartilage that surrounds the shoulder capsule preventing the top of the humerous bone from being able to be properly put back into place. So I am now waiting for shoulder reconstruction surgery to fix that lot
I can’t WAIT for 2013… it has to be better than this year.
So pleased that normal service has been resumed. It has been a terrible year for you Belinda and I really hope that 2013 will be so much better. Insult to injury with the shoulder! That must be so incredibly painful - hope that is sorted really soon. It must be really tough atm but try to keep smiling! Thinking of you! Teresa xx
hi I just wanted to wish u a speedy recovery for ur shoulder n big hug keep up the positive frame of mind here’s to a better, brighter 2013 for u Lou x
Hi, I am glad you are feeling better today even with all your problems, you must be in a lot of pain with your shoulder. Take care and stay positive, as much as you can. Karen x
I ‘like’ that you’re back with us Belinda but oh, what a dreadful year it’s been for your health. We who know you and think you are brave and brilliant, hope that this next year brings you better health and a better neurologist!
Thank you so much everyone for all your kind hugs and good wishes.
I got the results of the blood tests today… negative for Antiphospholipid Syndrome BUT… (there had to be a but didn’t there?) apparently some people are what is called sero-negative for Antiphospholipid Syndrome. There is another blood test that can be done in this case but it doesn’t give reliable results if you are on Warfarin which of course I am and I can’t stop the Warfarin because of the risk of dying from another PE.
So for now I DON’T have Antiphospholipid Syndrome but because of the history and symptoms there is still a possibility I DO have it so I have to see a specialist next year to figure out where to from here…
So, jeeze, those blood results cleared things up a lot didn’t they???
Too hard for me to understand… and I thought diagnosing MS was complicated!!!
Good Lord Belinda it doesn’t get any easier does it?
Fingers crossed that you have an easier time in 2013 hon, and so glad you’re not leaving us.
I was accused of ‘ruling the roost’ by an Anon user to ppms site recently. Was upsetting and made me feel very bad as thought maybe it’s true. But yes, have to get over it and hold head high. You and I have been on here a long time and I know I would feel a little lost without this forum… and always lovely to see you on here.
I don’t know if you’ve ever watched ‘House’ Belinda but Hugh Laurie’s character would love you because your ‘case’ is so complicated! Hope all these things can be stabilized, so that all your symptoms settle down. Teresa xx
Did you see that episode of House where a person came in with pins and needles and wonky vision and House diagnosed MS and called to a nurse in ER, “STAT! Beta Interferon!!! This person has MS!” Nearly fell off the couch laughing!!! Never had DMDs offered to ME quite like that
Most of the cases he gets seems to lead to an initial diagnosis of MS but obviously it is not a ‘sexy’ enough illness because it always leads to something else. Teresa xx
Just saw this Pat and am absolutely horrified that someone could be so horrible to you. You are a wonderful asset to this forum and always happy to help. I hope that you will completely ignore the pathetic act of jealousy that led to that anon post. Kx
And if that anon is reading this: shame on you! Did it ever occur to you that Pat posts a lot because she is HELPING people?! I suggest you would better spend your time trying to be just like her.
That’s great news that you haven’t got APS but wonder what the other blood tests will show. You poor thing you really have been through the mill. Then you add to it by hurting your shoulder, I really do hope the pain is not to bad and it heals up quick as a flash. Take more Gin with it next time and you’ll get through the door easier. Only kidding. Hope you fel heaps better soon.
Thank you Karen for your very kind words. This is one of those occasions when I wish we still had ‘reply to reply’ option as I don’t wish to hijack Belinda’s post, but think I should explain because in truth I think I had answered a post hastily and now regret it.
A new ‘anon’ user had asked another user her age and whereabouts she lived. Without thinking it through properly I answered very angrily in a ‘How dare you?’ way. The question was of course inappropriate, esp using ‘anon’ to ask it.
But by jumping in so quickly and in such a hostile way I caused the anon user, who apparently was new, to leave the forum. So in fact I alienated a new user with ppms who had no doubt come here for support and had asked the question without a hidden agenda.
I’m not writing this hoping that people will tell me I did the right thing. It was one of those times when I wish I had said to myself ‘Step away from the laptop’ until I was able to answer in a less hostile way… or in fact left it for the user who it was meant for to answer.
Anyway, a lesson learnt. I acted too quickly and without thinking it through… and the ‘ruling the roost’ comment did shake my confidence a bit.
Thanks again Karen (after writing all that serious stuff I look out my window and see a Santa and an elf walking down the street… sometimes you’ve just got to lighten up!)
x