HELLO FROM THE NEWBIE!!

Everyday living
1

Hi,

I am wondering if anyone can tell me whether a ‘recovery’ can last just two days??

My ‘journey’ started 4 mths ago when I was admitted to hospital. two mri scans show brain lesions (no spine yet) and the lumbar puncture tested positive. I have another scan in two and a half months but am in that 'limboland ’ at the moment with no meds diagnosed with clinically isolated syndrome of cns demyelination. I am not at work and the symptoms are becoming worse…all apart from two days, ten days ago, when for the first time since leaving hospital I felt normal with virtually no symptoms…then…bang , back with avengence and much worse.

My legs are affected , back , swallowing and bad vertigo and is it normal for the eye pupils to enlarge??(my neuro eye test was fine) I just wait to be better…who am I kidding but myself? I won’t see the consultant for another five and a half months but was advised should I get worse to make contact and they would try to bring an appt forward. Is this usual and should I see my GP if the deterioration continues?

I know there are some very knowledgeable folk out there , after all nothing beats experience and I would be grateful for any advice.

thank you

2

hi mrs s

absolutely see your gp. it’s good to get it all on your medical records.

make notes of when new symptoms appear. when old ones get worse etc and preferably with dates.

you say that your consultant advised you to make contact if you got worse so do that and hopefully they will bring your appointment forward.

good luck

carole x

3

thank you carole,

I will make an appt next week with the GP (thats a challenge in itself!!!). I have had a diary running since it all started so will keep it going and I will probably have a word with the consultants secretary too.

On the positive side its a nice sunny day!!

thanks again

4

Yes it is possible; see http://www.mult-sclerosis.org/relapsingremittingmultiplesclerosis.html

Where your pupils enlarge is a strange symptom called Afferent Papillary Defect; see http://www.mult-sclerosis.org/afferentpupillarydefect.html

It may sound horrible but your next scan will probably show more lesions and the Neurologist will probably feel confident in giving a firm diagnosis. This in turn will mean treatment; not nice while it’s happening but a lot better than being in limboland for years.

Yes I would ask to bring you appointmnt forward.

All the luck in the world darling

George

5

Thank you George,

I really do think that this is a relapse after two 'recovery 'days, am feeling absolutely dreadful today and about to call the docs for appt.

I am realistic though and I think too I will have more lesions (i had two small extra on second scan 4 weeks after the first but that could be down to the fact I had the second on a more up to date and accurate scanner hence didn’t show the first time…or not ) At least then I will hopefully receive some meds as you say.

another, on the positive side … have bought two xmas cards…yes thats all!!!

cheers