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Guyzle

Hello. I have just been (loosely) diagnosed by a neurologist with Progressive MS. I am 99% sure in my own mind that is a correct diagnosis but I have niggling dubts. Have had MRI’s of Brain and Back etc etc. What I am frustrated with is that the chap would’nt 100% commit to the diagnosis and has now said “why not give a single course of steroids a go as you’ve got nothing to lose”…and that might clear the symptoms up !

My symptoms are mild but very impacful on my life, but I can clearly and easily induce them and then after an hour or so rest I am back to about normal. My wife is frustrated because like me she thinks he is vague and non commital. We have come out from the (5 minute ! !) consultation with more questions than answers.

If feels as if with from the first moment they have assumed it’s MS and ONLY been looking for evidence of MS. Apparently there are signs of infection in my spinal fluid, so is it possible I have an infection that can simply be resolved with some drugs ??, or should someone have been looking at my scans with a more open mind, could it be something really simple like nerves trapped ??.

How do I ask for a 2nd opinion, purely because I don’t like the style of the consultant and therefore am not convinced of his surety. IS there another branch of medicine that I can go to for further investigation.

hi

what sympotks do you have? Are any red flags for Ms as in lhermittes ?

He may be proposing the steroids as part of a confirmatory process.

My understanding is that PPMS wouldn’t/shouldn’t respond to steroids. Therefore suggesting you try them might be a way of testing his hypothesis. If they did clear things up, it would point to it not being PPMS, but possibly still RRMS (i.e. relapsing, remitting).

Tina

I do get a strange tingling down the back of my neck if I push my head to my chin but no pain or sensation anywhere else when I do, now that you mention it. I can’t remember how long I have had this for though. The consultant never mentioned or checked for this so I have never connected it with any symptoms as such.

My understanding too is that the drugs don’t work for PPMS but I guess I ought to try them just for the 1% chance they clear it up…

Hi, I was highly suspected of having PPMS and went for the usual barrage of tests. Nothing ever proved MS.

Yet, after a process of eliminating other possible causes for my symptoms,I was left with a 95% diagnosis of PPMS.

I was given a course of iv steroids…they did nowt!

For several years, I had 6 monthly neuro appointments and saw 16 different neuros over as many years.

In 2010 I was told I didnt have MS afterall, but something quite rare and called hereditary spastic paraparesis. It does mimic PPMS.

But as we have no-one else in the family with symptoms like mine, even HSP isnt 100% defo!

Fun, innit?

You just gotta hang in there somehow hun.

pollx

Hi Poll

hiw did they come to that conclusion? Was it symptom based or exam based? What do your mri and lps show?

guyzle what sort of tingling is it? I know a lot of people get tongling down thier neck, it’s also called barber chair phenomenon, try sitting upright in a chair and doing it

Krisp - the tingling is just that, generally very minor, doesn’t go anywhere else and is not painful. It’s not something I have even taken notice of until I read it on a website this morning so don’t know if it’s a permament fixture now… Sitting in a chair doing it just now does’nt do it and I’ve just tried standing up doing it and that has not had the tingling effect either - so that bit must be random with me ??.

Poll, hang on in there is all I can do I guess, not sure what to think now, from what you’ve said. I’m adopted so have no family medical history knowledge. Just went to get the ikkle prescription for the drugs and they want £90 !!. WTF ??. Consultant did’nt mention that minor point when he said “give 'em a whirl even though they probably won’t work”…