I need help

Everyday living
1

Hi , I have been diagnosed for 2years now and in that time had numerous admissions to hospitals not being able to walk also because I can’t take oral steroids , on having MRI no new lesions are found on brain and neck , I was taken to Addenbrooks the last time and had another lb because my first one was negative and my second one was also negative , my ms nurse has said this is unusual , has anyone heard of this happening? I am confused , they are still saying ms but unusual !, HELP

2

Sorry meant to say that I have got all the usual ms symptoms , foot drop , incontinence (bladder) cramps twitches, spastisaty of feet and legs , eye problems , mobility problems (bad) fatigue , memory problems , etc etc

3

It’s happened a few times that people have posted on the forum where lp comes back negative but still has a diagnosis of ms. I think I might be wrong on percentages but think its something like 5-10% are diagnosed with ms even though lp’s are negative. I’ve got ms and lupus and my blood tests for lupus came back negative but it was explained that sometimes it can take years for the body to produce the positives.

4

It has been 2 years between my first lp and my latest one

5

I think some people have always shown a negative lp but still had a diagnosis of ms. There’s also a lot of people that have been diagnosed with ms without an lp so who knows whether there’s would be positive or not

6

Thank you , I would love for them to turn round and say they have made mistake and I didn’t have ms , but then what do I have ? , I have now started wetting the bed at night I am really embarrassed about this , it started in may when I was last in hospital and has continued now about twice a month .

7

Hi, about the bed wetting. it may help to talk to someone from the contience service. They could get your gp to prescribe something. Are you using pads now, to save on bed soiling?

pollxx

8

hi shirley,

as well as pads the continence nurse could give you other things.

i self cath now and have kentera patches to ease the symptoms of my overactive bladder.

hope the lp goes well

carole x