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Despair over possible MS diagnosis

Juliet_84
Valued Contributor
Valued Contributor

Hi guys,
I have been having a tough time recently and was hoping for some words of comfort. Some of you may already know, but a few years ago I suffered a major stroke that almost killed me. My entire right side was paralyzed and I was in hospital for a week and had to learn to walk again, my balance was affected, to simple dexterity things like use cutlery etc. Before the stroke, I had been suffering dizziness for months and told my doctor but they dismissed it. At the time I was concerned that I may have the early stages of multiple sclerosis, it was just a gut feeling that I couldn’t shake, but after the stroke they told me I had a blood disorder instead. I honestly felt so relieved at the thought of not having MS and my future suddenly felt brighter and I dared to hope. I started exercising again, looking after myself, and felt generally happy to be alive. Anyway, fast forward 4 years and it seems as though the doctors may have misdiagnosed me and I may be staring down the barrel of a multiple sclerosis diagnosis again. This feels like absolute torture, I feel as though I’ve had the rug completely pulled out from under me, I just break down in tears from absolute despair when I think about it. I’ve gone back to hating to think about what the future may hold for me. I just wonder how much one person is supposed to be able to take?

Juliet

9 Replies 9

Juliet_84
Valued Contributor
Valued Contributor
Moderators: I’ve posted this in the wrong forum, can this please be moved?

Croix
Community Champion
Community Champion

Dear Juliet~

You have had a very hard time, a series of major problems plus uncertainty, the one that really gets a person. Coming back from a stroke is no small thing. Having one is a horrible frightening thing with no quick fix. You have my admiration for overcoming it. Determination, work, plus I guess some luck. I really hope you managed to get that dexterity back.

MS is of course a different thing altogether and even more frightening in its way. Life really is not fair.

Before answering you I looked back over the last couple of years and re-read some of your posts, very often encouraging others or simply offering common sense. Whatever your predicament you have always appeared an intelligent and caring person able to see others.

If I remember even though you had a critical family you do have a sister that cares - I hope I got that right, and your corrosive ex has gone. When thinking my life was being increasingly curtailed by a degenerative spinal problem I have found a couple of things, my priories honed down to people and a few other things, plus I seemed to get more determination from somewhere. Dunno if that makes any sense.

I'm not sure your diagnosis has been confirmed at this stage. I guess all one can do is hope and press the doctors.

Well, no, not all. I've found embarking on engrossing and taxing activities is a source of distraction and satisfaction. Do you think you might have something like that you might have been meaning to do?

Croix

Juliet_84
Valued Contributor
Valued Contributor
Hi Croix,
Thank you for your thoughtful and kind words, they mean more than you know.
Life has been harder than I’d imagined it would be as a kid, and sometimes harder than it needed to be, and I don’t feel as though I’ve caught many breaks. This has left me feeling as though I have very little in common with people my age. Which leaves me feeling isolated and alone, as though I’m drifting out at sea. Desperately trying to stay afloat in my leaking boat. While everyone else is safely back on shore. But you’re right, I do have a sister who I am close with and who cares. I tend to isolate myself when I get like this but will make an effort to go out and see her this weekend. I also have a holiday booked, to Greece no less, in a months time. I had booked it before my neurological symptoms had returned and so now I feel a vague sense of dread when I think about it. But some time in a beautiful place with a good book may be just what I need. I’ve also recently volunteered my services as a grant writer for a domestic violence shelter, so hopefully I can help out there.


The MS diagnosis has not been confirmed at this stage. I had a recurrence of neurological symptoms a few weeks ago which has raised suspicion but I have asked to have the MRI when I get back from holidays. I was initially told that I was suffering a migraine when I had my stroke, despite entire right sided paralysis. So I don’t hold out much hope for a quick diagnosis, I suspect the uncertainty may continue for a while yet. Some days I’m ok, but it’s always just right beneath the surface at the moment.


Juliet x

Croix
Community Champion
Community Champion

Dear Juliet~

You sound a most capable person and I'm sure you are right, having had to face the things you have will naturally have placed distance between you and other young people that have had more sheltered lives. It's not altogether a bad thing, life experience does count for a lot.

By the look of things you already have started to organize your life. In the short term a Greek holiday may be just the thing to take you mind away from current problems, and your grant writing may lead down quite unexpected paths as you research and make contact with the people you need to put an application together.

I'm sure you are aware that many government departments actually hold seminars on how to submit grants most acceptable to them, I found this out at such varied places as the National Library and the Dept Primary Health Care. In fact advocacy, which I guess writing grants is akin to, can be both worth-while and absorbing.

Please be conscious of that unhelpful instinct to isolate yourself. I found it quite hard to overcome when serious hassles struck.

Croix

Juliet_84
Valued Contributor
Valued Contributor

Hi Croix,

You have cheered me up no end this evening, things seem a little less bleak.

I will check out the government department seminars you mentioned. I have minimal grant writing experience though am a medical writer by occupation so am fairly comfortable with academic writing. Hopefully it will be a good use of my skills and it will be nice to help out in an area that has some significance for me.

I will try to be careful not to isolate myself, although I have found it a particularly hard urge to overcome as it does seem to be my natural instinct.

Juliet x

Croix
Community Champion
Community Champion

Dear Juliet

Thank you for saying I cheered you up - the feeling is now mutual:)

I'm probably telling you what you already know however from the little I've seen on grant applications the assessors are always looking for a set of pre-defined criteria to be met and are amazingly specific. Experience (or instruction) does help.

The NLA seminars deal with heritage matters and would not be applicable to your field. PHC maybe, dunno.

Croix

Terry73
Valued Contributor
Valued Contributor

Hi Juliet,

I cant say much as I am not going through what you have, but I can offer some comfort and hopefully open up possibilities in moving forwards.

As horrible as things are, you still have the ability to enjoy life, so just enjoy it. In this regard, I often think of life like a hand of poker (I am not a gambler, but using this as a pure example only), sometimes we do get really horrid hands, but it is how we deal with these hands that allows us to see rewards. So I simply suggest doing everything you can to enjoy life, for what ever time we might have.

That is about all I can offer you, and I hope that you can live a good happy life, and hope that it is for a long time to come

Terry

Juliet_84
Valued Contributor
Valued Contributor

Hi Terry,

You’re right of course. I guess the thing that has gotten to me is that, for the past two years I’ve made some pretty drastic changes in my life and I was starting to feel stronger and allowed myself to hope that the future would be brighter. This has been a knock, no doubt, but I will dust myself off and pick myself back up again and get on with it. I’ve gotten through things before and I need to have faith that I will do again.

Juliet

Terry73
Valued Contributor
Valued Contributor

Juliet,

You have done it before, you can do it again, just dont let the small stuff stop you from believing that

Terry