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Help / Advice urgently needed - sorry if I've posted in wrong place

Apologies if I’ve posted on the wrong forum!

My mum who’s 55 has had ms for the past 13 years. She’s now secondary progressive. She’s been in a nursing home for the past 4 months (which was meant to be short respite), but unfortunately due to her husband not wanting her home and is washing his hands of her were in the process of applying to court for an occupation order. She is totally wheelchair bound.

She has been getting UTI’s every 2 weeks (or what we thought), symptoms - severe drowsiness, unable to focus, slurred or no speech, severe spasticity resulting in whole body going entirely stiff in whatever position she happens to be in at the time, and totally unable to swallow. These symptoms can last minimum 12 hours to several days and come on without no warning! Having finally seen the urologist he’s confirmed that only 2 out of 5 samples were infected.

Doctor two weeks ago doubled the Baclofen dosage.

Finally spoke to MS nurse who said that the above is not MS related, but she will speak to her consultant when he returns from leave in a week. Does anybody have any insight please. We are not getting anywhere with doctors etc and it is heartbreaking to see this happening, as of late its been getting very frequent - once or twice a week :frowning:

We don’t know where or who to turn to!

I think that I can understand your problem. Personally, I can’t really give you any advice - my own Doctor has 2 relatives who have MS (he considers himself to be a likely candidate himself in the future but he ‘cannot’ be certain). Nobody really knows (for certain) about MS (including ‘MS’ nurses). That is my understanding - I’ve had MS for 13 years (I think?) Nobody seems to really know (incl. me). It is frustrating to have nowhere to turn. I ended up ‘trying to relax myself’ - IT DOESN’T ALWAYS WORK!

I am on anti-depressive tablets just now (but I am not a Doctor) so please don’t follow me just because I’ve said something - I didn’t put myself on anti-depressives - my own Doctor did. But even he (I think) would not be sure?

There doesn’t seem to (sorry - isn’t) a cure for MS. I ‘may’ have ‘improved over the 13+ years (I’m 55 years old) or I may have ‘got used’ to it?’ - I don’t know.

I’d like an answer myself as well - Research is (I believe) giving positive ‘vibes’ but not for 10-15 years - by which time I’ll be going on 70 yrs old (if I’m still alive?)?

MS sucks!

Marcus.

(Just to make matters bloody worse - my own initials are - MS!!) Stay Cool - don’t upset yourself.)

Oh, I forgot to ‘add’ - I’M ALSO 55 AND HAVE HAD MS FOR 13 YEARS (THE SAME AS YOUR MUM) - I MEAN’T TO SAY THAT IN MY MESSAGE BUT I FORGOT! - ANOTHER SYMPTOM OF MS?

I AM NOT ‘WHEEL-CHAIR BOUND’ BUT I DO USE A ‘ZIMMER’ AND USE A WHEEL-CHAIR WHEN I’VE GOT A LONG WALK!!

IT’S UNFORTUNATE TO THINK THAT I USED TO PLAY RUGBY AND ‘LONG-DISTANCE’ RUN AND ACHIEVE A ‘BLACK-BELT’ IN TAI-KWON-DO (A ‘KOREAN’ MARTIAL ART!)

I HATE MS!!!

I am so sorry that I can’t offer any decent advice other than to perhaps get your mum to A&E if it happens again before the neurologist can help.

I know a wee bit about the brain, but can’t think of a single area that controls all of those symptoms. If you take out the inability to focus, the rest are controlled by the brain stem so perhaps your mum has new damage there, from her MS? If the focusing is definitely happening at the same time and it’s not a side effect of reduced consciousness, then I’m afraid I’m at a loss - the brain stem has nothing to do with vision.

I really hope the neuro can help.

Good luck!

Karen x

PS If 2 of the samples were infected, doesn’t that mean that it could still be a UTI? 2 isn’t 0 after all.

Sorry - woke up realising I’d made a mistake. Eye muscles are controlled by a nerve that ends in the brainstem too. If they aren’t working properly, focusing would be affected.

Please note that I am not a medic. This is just a semi-educated amateur’s guess!

Kx

Just one nasty thought:

Could this be the start of Parkinsons?

The fact that your Mum is wheelchair bound could be masking the balance problems that come with PD. The spasticity, speech problems (possibly spasticity of the jaw muscles) and the drowsiness all fit with PD. One problem is that many of the PD symptoms are the same as MS - even though the cause is different.

The usual test for PD is to try one of the medications to up her dopamine levels (Sinemet or Medopar) and see if things improve - but one known side effect of Sinemet is the ability to fall asleep instantly (like my wife can do it in mid-sentence, and it was quite scary the first few times).

The big thing about PD is that the medications mentioned have the effect of almost halting disease progress at the point where the medication was started - so the sooner you get it checked or eliminated the better.

Geoff

hi, thanks guys. I know were all in limboland with everyone re: ms!

Nursing home got the gp out today, and the gp said he hasn’t got a clue! at least he was honest and that in his opinion it wasn’t ms related and that mum should be seen quickly by the neurologist for further tests! the ms nurse again confirmed that she didn’t think it was ms related!

arggggh

I have found over these years that just because someone has ms medics tend to push all other symptoms into the same bracket because they simply don’t know, care, and its easier to brush things aside! For goodness sakes, these people are still human beings and deserve compassion, care, dignity and the same treatment as everybody else.

I am so angry and sad, I think I would find it easier to accept if mum was older, but being 55 and surrounded by dementia people in a nursing home is killing me watching her suffer :frowning:

hi, thanks guys. I know were all in limboland with everyone re: ms!

Nursing home got the gp out today, and the gp said he hasn’t got a clue! at least he was honest and that in his opinion it wasn’t ms related and that mum should be seen quickly by the neurologist for further tests! the ms nurse again confirmed that she didn’t think it was ms related!

arggggh

I have found over these years that just because someone has ms medics tend to push all other symptoms into the same bracket because they simply don’t know, care, and its easier to brush things aside! For goodness sakes, these people are still human beings and deserve compassion, care, dignity and the same treatment as everybody else.

I am so angry and sad, I think I would find it easier to accept if mum was older, but being 55 and surrounded by dementia people in a nursing home is killing me watching her suffer :frowning:

oh forgot to say, gp today has started her on diazepam to see if that will help with the spasticity