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has anyone been dx with presrumed m.s?

i have been dx with presumed m.s n not sure what this means. i was told by the neuro in my r/v appt that my symptoms weren’t consistent with m.s n r/f me to rheumatology. rizzo from here some time ago suggest a pathway of lupus or lymes disease after reading my symptoms. lupus was -ve. lymes titre was -ve too but the doc did say that a reliable -ve was unlikely coz i was tested after elephant dseso of steroids and abx.

Hi,

Can’t really help, but noticed your post had gone unanswered.

I’d say it’s a confusing and unhelpful diagnosis, to say the least. In fact, I’m not even sure it is a diagnosis. The possible formal outcomes of an MS investigation are: Possible MS, Probable MS, MS (usual to further specify which type), or finally, of course, NOT MS.

You’ll notice “Presumed MS” isn’t on the menu! I can only suggest you seek further clarification of what such a vague diagnosis means for you. If they’re going to “presume” you have MS, does that mean you will be under the care of a neurologist? What would it take to confirm or refute the presumption? Are they going to conduct further tests or follow-ups?

Sorry to answer your question with more questions, but I think these are reasonable things to be asking.

Tina

Yep, like Tina says I was given the ‘likely’ ms at first appointment.

At my 2nd appointment I asked if that was definite and he said “undoubtably”, just unclear on the type…

I would imagine that presumed is another way of saying likely but I’ve never heard of that as a Dx so yes, I’d ask for a more definitive answer!

Good luck, it’s horrible when there’s so much uncertainty

Sonia x

hello. I can give you an answer, as what is happening to you, happend to me!

I began with walking problems back in 1997…I was gaining weight, after losing a lot (on purpose) and I put my problems down to that!

I saw a neuro in 1999, as I was falling all over the place and fatigue was bad. I also had painful spasms in my arm.

The neuro said a strange thing to me;

There is something very wrong with your left leg and there are signs of the same in your right leg. I dont know what is wrong with you, but it wont get better.

What a stupid and strange thing to say to any patient, I thought at the time!

He did an MRI, an LP, an EMG and lots of blood tests. They all came back normal. A tumour, a trapped nerve and other things were ruled out. He and other neuros saw me every 6 months. My mobility rapidly worsened and I was in a wheelchair, part-time within a year or so.

In 2003, I was given a 95% diagnosis of PPMS. My clinical presentation looked exactly like it.

I accepted this and was treated like any other PPMS patient. My visits to neuros changed to annually, as there was nothing they could do for me. i was prescribed baclofen, amitriptyline and quinine…all typical meds for PPMS.

Then suddenly, in 2010, after seeing another neuro, PPMS was changed to HSP (hereditary spastic paraparesis)…my world was turned upside down and inside out!

HSP carries a 50% chance of my children developing it, so I was beside myself with anxiety about that and apologised to my children!

A year later, yet another neuro dismissed the HSP and PPMS was back in the frame.

Are you still following this hun? I know it`s a doozie to get your head round, eh?

In 2012, I saw neuro number 14 (I think) and he fundamentally dismissed MS altogether and Spastic Paraparesis/cause unknown is now my label. I know of no family member with similar problems. So really I am still in the dark, like you.

Sorry if my story has alarmed you, but it just shows you what can happen.

Ask away if you have any questions hun.

luv Pollx