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Posted: **Sun Apr 27, 2008 9:07 am**

I hope she doesn't have to wait too long, and that the results are good.

Posted: **Sun Apr 27, 2008 11:34 am**

The theory is that the longer it takes to get the results, the better the result, working on the premise that the more urgent cases are seen first ..... that would be reassuring IF the NHS wasn't in such disarray :dunno:

So I think the answer is, wait a couple of weeks, if nothing's heard, then back to daily phone calls :tantrum2:

Thanks for the good wishes everyone, I really appreciate them :grouphug:

Posted: **Mon Apr 28, 2008 7:31 am**

Oh, that is a long time to wait !! Often it means that there is no urgency - but still a long time. I would have a problem with claustrophobia, too. All my very best wishes !! :grouphug:

Posted: **Sun Aug 10, 2008 8:18 pm**

UPDATE ..... Laura's problems continue, we're no further forward at all, she's had various visits to casualty when the attacks have got bad, without any progress, she's now had a MRI scan, a Lumbar Puncture, various electrical tests, eye examinations, skin tests, the list goes on and on.

She finally got to see the specialist last Wednesday, her and her mum were in with him for an hour, but at the end of it all, he admitted that he'd no idea what the problem is, but thankfully he didn't think it was MS as the Lumbar Puncture and the MRI scan were completely clear, he had been leaning towards some sort of a Virus, however all the blood tests show no sign of virus fighting, so basically whatever it is, her body doesn't seem to think there's anything wrong, so it's not fighting it off.

So he's going to consult other specialists to see if they can come up with anything, in the meantime he's advised her to get on with life as best she can, not easy when she's in quite a lot of pain most of the time, plus she's so tired that she falls asleep everytime she sits down. Not much fun when you're 18

So it's back to waiting :tantrum2:

Posted: **Sun Aug 10, 2008 11:18 pm**

That's so horrible for her Deja. I hope they can get to the root of it soon and get her on whatever medication she needs so that she can get back to a normal life. It's hard enough being ill when you're older but the the young it is a devastating thing.

Posted: **Sun Sep 07, 2008 5:21 pm**

I have only just seen this thread, Deja. What an awful thing to have happened - is there any more news?

Posted: **Sun Dec 13, 2009 1:53 am**

[font=Trebuchet]I'm new to your forum. I don't remember why or how I pulled it up a few days ago, but I did, and I found the health section and in large letters "demyelination". That certainly caught my attention.

If nothing has been resolved in the time between the last post and this, please suggest to your physician ( hopefully a good smart neurologist ) to look into CIDP ( chronic inflammatory demyelinating polyneuropathy ). I'm glad the doctor didn't feel it's MS. That would be a relief. CIDP is the flip side of the coin to Guillain-Barre. GBS/CIDP are sister diseases to MS and ALS. They are a few of the many auto-immune diseases, as is, for instance, rheumatoid arthritis.

There are a couple international forums for adults, young people, parents to more or less do the research and discussion that take the kind of time doctors rarely are able to give ... particularly since demyelinating diseases have only recently become known and are still not well studied.

Rocky

P.S. And yes, I do have CIDP, have had for a couple years.[/font]

Posted: **Sun Dec 13, 2009 10:06 am**

We've not heard anything lately so how about it Deja - what is the latest news.

Posted: **Sun Dec 13, 2009 2:03 pm**

Rocky, thanks for your imput, I have taken note of your advice should I need it :mrgreen:

She seems to be much better these days, the attacks coming with less frequency and severity, although she still tires very easily and is still painfully thin.

The doctors decided she was having a very rare form of Migraine, which came in the form of paralysis, rather than the usual headaches and that this was caused by an equally rare reaction to the contraceptive pill, I was very sceptical of the verdict, however there has been an improvement since she stopped taking it.

So we're just hoping they were right :dunno:

Posted: **Sun Dec 13, 2009 6:04 pm**

I've not heard of demyelination and periodic limb paralysis being the result of migraine. I have heard of demyelination being the cause of migraine, but not in and of itself without further diagnostics ... the fatigue and fleeting paralysis would be two of those.

I worry that the doc is somewhat uninformed.

It'd probably be a good idea to start doing some research yourself. If nothing else, to hopefully ease your mind.

And even if it does turn out to be one of the demyelinating neuropathies, this is not any kind of death sentence. Inconvenient, certainly, and annoying and fatiguing and maddening at times ... but not fatal except in very rare cases.

And please don't let that last paragraph frighten you. As a rule, we're a quite hardy and long-lived bunch of folks.

I wish your granddaughter much good luck and the kind of good health that'd make all this just some sort of fluke.

Rocky

Posted: **Sun Dec 13, 2009 8:58 pm**

Thanks hun, much appreciated and I'll keep your advice in mind, should the problem re-occur.

You post very well for a 9 year old :rolleye11:

Posted: **Sun Dec 13, 2009 10:05 pm**

dejavou wrote:You post very well for a 9 year old

Don't I, though! :lilangel:

Posted: **Sun Dec 13, 2009 10:21 pm**

Posted: **Mon Dec 14, 2009 3:15 am**

Posted: **Wed Dec 16, 2009 7:58 am**

I did not realize that migraines could appear in the most peculiar forms, until recently, when a friend suddenly could not see very well. He had no pain, only flashing lights. I drove him to Casualty, where they sent him back to his GP, with the advice to see a couple of specialists.

Turns out it is peculiar migraines, with no pain. Other forms of migraine can be in the stomach, in the joints, in all sorts of places, so he was told.

DEMYELINATION