Thursday, February 04, 2010

The mysteries of MS - 3

The leg spasms have not gone away, so on Monday I decided it was time to report them to the GP. My appointment was yesterday. As I thought, there is nothing much she could offer to help, other than advice to keep moving and stretching the leg, and to carry on as I have been with heat pads and hot drinks, which do help.

Any treatment plan is in the hands of my neurologist, who I'm not due to see again until June. The GP didn't feel the new symptom warranted bringing forward that appointment, which is, of course, good news. At present the consultant's plan is just to deal with individual symptoms if necessary as they arise.

The thing is that although there are some treatments to alleviate MS symptoms they are apparently not very pleasant. Even the first option, in the case of a big relapse, would be high dose steroids. I'm keen to remain unmedicated for as long as I
can and to just be careful with diet and exercise and look after myself to the best of my ability that way.

Then there is another mystery. It appears that there is a possibility that my MS may not be MS at all, but another disorder masquerading as MS.

I had a slightly abnormal blood test last summer, which the neuro wasn't too excited about. It was repeated in December but I've not yet heard the result. This may mean that it was normal or more likely the hospital have lost the results or screwed up the test yet again.

If the result of the first test is replicated then apparently the abnormality could be at least partially causing my MS symptoms. Or something like that. As the GP says nobody really knows what MS is or what causes it. It could be a number of underlying issues which all produce similar outcomes.

My MRI scan and other symptoms were certainly indicative of a diagnosis of MS, the brain lesions were clear on the scan. I suspect that if the blood irregularity does prove to be part of the cause, then the overall diagnosis won't change but maybe the treatment plan will. Haematologists will probably become involved as well as the neurologist and the MS nurse who I am due to see for the first time in April.

It's just a game of wait and see.

11 comments:

JJ Beattie said...

Aw, Cathy, that's a hard game for you. I hope the leg spasms go soon and you hear good news.

HelenMHunt said...

It must be difficult not knowing. I hope you are on the route to a positive knowledge of what is going on and workable ways of keeping it under control.

Cathy said...

Thanks JJ and Helen.
It is the not knowing that's hard, because the doctors can't diagnose what form of MS a patient has until they've seen how the disease progresses over a period of time. I had a late diagnosis, which is often not a good sign, but who knows?
Cx

Anne Brooke said...

I agree with all these comments. Thinking of you loads and sending hugs ...

Axxxxxx

Cathy said...

Thanks Anne.
Cx

Amanda said...

Sending hugs and hope you get some answers very soon x

Cathy said...

Thanks Mandy xx

Crystal Jigsaw said...

Gosh, you need to be patient for this don't you. The MRI scan can pick up alsorts of conditions so they should be able to diagnose whatever it is surely.

Just take it easy in the meantime, and keep us posted.

CJ xx

Cathy said...

CJ an MRI does show the damage, but not the cause. MS is an autoimmune disorder, but no one knows what makes the body attack the myelin.

If anyone ever finds out, I'll be sure to let you all know.
Cx

Debs said...

How frustrating having to wait for the doctors to let you know the results of your tests.

Hope they get back to you with some confirmation soon. x

Cathy said...

It is frustrating Debs, last time it took the consultant months to write the results. But I always work on the basis that if there actually was anything serious they would act quickly, so no news is good news :)
Cx