Neurologists confused

New diagnosis and before diagnosis
1

I’ve seen two neurologists in the team and had several appointments but they are not sure if I have MS or not:

my brain MRI shows multiple lesions

my lumbar puncture results suggest MS

the urologist says I am not emptying my bladder due to nerve damage and says I will need to self-catheterise.

my bowel was removed 3 years ago due to ulcerative colitis

I am tried all the time

my legs and feet feel painfully freezing cold but are not cold to the touch

my feet are painfully prickly

my hands and arms tingle

these symptoms are constant and getting worse so suggest primary progressive as does my age, 49

what seems to confuse them is that the symptoms are even across both sides of the body, so they are ordering a neck MRI and waiting 6 months to see how things progress

Does this sound like MS to you?

2

Yes it does and there does look like enough evidence to suggest that. But there are other conditions which mimic MS and therefore, some neuros need more proof of MS, before they give a diagnosis.

Just hang in there chuck.

luv Pollxx

3

Hi Annah,

I’m afraid that I can’t help.

But other people have reported that symptoms, on both sides of the body, rule out MS.

This topic needs further discussion.

Anthony

4

I can only comment from my own experience about bilateral things. Some of my MS troubles have been one-side only - hearing loss in one ear only, loss of power in one hand, one leg only was affected by a bad relapse and is now permanently weaker than the other, etc. But everything else has been bilateral in terms of impact and timing and patterns of coming and going etc - for instance, I have the same (now permanent) pattern of sensory loss in both hands, the same things generally go the matter with feet and legs on both sides at the same time, I had partial visual field loss that was exactly the same in both eyes at the same time etc.

Alison

5

Hi everyone I’m new to the site I’m waiting for a MRI scan my neurologist doesn’t think I have ms but I think I have ppms. Can anyone help me with my thoughts please. Feeling in limbo and alone.

6

hi annah

it’s a crash course in learning to be patient.

it was about 12 months for me from first going to my gp to getting diagnosed.

carole x

john brooks 1973

don’t try to second guess what the neuro will say.

he/she will need to rule out other conditions.

as for ppms absolutely don’t fret about which flavour you have.

carole x

7

Thank you so much everyone for your comments and support.

The neurologist who sent me for a lumbar puncture seemed to be saying that the lumbar puncture would give a definite ‘no MS’ result so I naturally assumed that a positive result would be as simple.

But as the neurologist said who gave me the results, there is nothing they can do for ppms anyway except treat the symptoms!

I imagine a diagnosis would give me more support in the way of a ms nurse? I feel I can’t bother my GP about something I’ve been referred for. Maybe that is how Johnbrooks feels too?

8

Thanks carole just a worrying time hope you’re OK. X