Dunno ?

I saw the Neurologist today (for what it was worth).

Now hes not too sure what type of MS I have ffs. Ive another MRI scan booked in about a months time. I asked about HSCT but after hearing what some of the side effects involve I thought no way. Anyway, that`s all irrelevant now until they can properly diagnose me.

So Im still none the wiser about my condition. Yes I know it takes time but Ive been diagnosed with RRMS then PPMS and now IDKMS.

Roll on Christmas. Sod this hot weather.

Image result for hot and sweaty smiley gif

Get a mint magnum down your neck.

If you have no problems, it’s all good news. Regardless of what rabbit they pull out the hat.

If it was PPMS, you would know it, without any doubt.

Take it easy & breath. That isn’t against the law yet?

Mint Magnum ? No thanks.

How would I know if it`s PPMS ? My first diagnosis was a year and a half ago.


You’d think it would be to do with (not exclusively) the speed at which new symptoms develop and worsen without remission. Saying that, many ppmsers can go for twenty years and more before requiring the wheelchair, where others (myself included), go from cycling everywhere to wheelchair in two to three years. I like your artwork!

What’s IDKMS?

If you know my story, my diagnoses have been all over the place!

Have your MRIs shown lesions?

Polls x

I don’t know my symptoms, at a guess Polls.

I’m no text bilingual ist just yet. It takes a lot of code breaking skills.

You have to know a young mind.

IDKMS = I Don`t Know MS.

I`ve been diagnosed with RRMS then PPMS and now I was told not sure what type of MS it is.

Basically it comes down to guessing.

I personally think its something else other than MS. The reason I say that is Ive never had a relapse and I feel better now than I did when I was first diagnosed Feb last year. My main symptom is fatigue. My dizziness, balance, toilet urgency issues have all improved.

I have another MRI scan hopefully in a months time. I did have one lesion showing up on my last scan. Lumbar puncture showed some white bands.

If they dont know what the condition is say so. Dont label me with something incorrect just to get rid of me.

Scudger, you probably have SMS - Scudger’s MS. I have JMS - Jo’s MS.

MS does not like labels. It does what it likes, as no-one’s told it it has to follow rules - oh, wait a minute, perhaps they did, but MS being such an awkward sod, it just decided it’s not going to.

I really wouldn’t worry too much about the label, just do what makes you feel better. Frustrating, but that’s how life is.

The label won’t make a difference, MS is still going to do whatever it’s going to do - PPMSers relapse sometimes, RRMSers never have another relapse (even without drugs) - and ProfG (one of the country’s leading MSologists) thinks it’s all an artificial distinction anyway:

Jo x

Thanks for your reply Jo.

Oh Hi Scrudger, you sound like me.

In 2005 I had some numbness and after a clear MRI was told trapped nerve. Then in 2008 I felt dreadful with bad fatigue and was told virus. Then in 2011 saw a neuro as I felt foot drop developing. There were lesions with cord atrophy on my MRI and was told I had radiation myelopathy (from previous cancer treatment). In 2013 I saw a different neuro and after tests who said that I had suffered from tranvserse myeletis and looking at my MRI he was surprised that I was still standing.

In 2014 I then started to see an alternative natropath type person who said that me vitamin B12 was low and I should try supplements. I went to Wales and had an infusion of B12 then injected myself daily for 6 months and then weekly. During that time I began to feel stronger and less fatigued and numbness diminished. But the foot drop remained and I went to see a neuro in London in 2016. After looking at my scans he said that I had RRMS and should started tecidifera. I then went to my neuro at home to say this. I was then told I did not staisfy criteria for a DMD. He still queried the MS diagnosis but changed my dx to benign MS. I then decided to go Mexico for HSCT. For this I needed a new MRI scan. It was done and all the dodgy lesions on my spinal cord were no longer seen. Neuro was confused so I was sent for another on a higher machine and they were looking for the problem and it still came back normal! By this time I was in Mexico and the neuro there was confused too about the dx. I went ahead with the treatment as they could not rule out MS. I sailed through the treatment. The only weird thing is I am told lesions of the size of mine do not vanish in MS. To be honest I think that I had sub acute combined degeneration of the spinal cord due to B12 deficiency - basically because the lesions resolved after treatment with B12. Nerves have been left permanently damaged because they were left exposed for too long.

After reading your post Ive got it easy compared to you so Im gonna stop whinging. As I say my main symptom now is fatigue but that can be controlled. I am very interested to see what my next MRI shows.

Not knowing what we have plays on your mind big time.

I guess the main reason for knowing what type of ms anyone has, is that if there are any DMDs which might help, can be given.

My ppms diagnosis lasted several years.

Then I was told I was too well to have it so long!

Hence my label changed to HSP.

That’s unproven too!

Guess I’ll never know!


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What I dont understand is that if the Neurologist is unsure of the diagnosis then surely they should say I dont know and leave it at that. Not diagnose you with RRMS or PPMS which is totally inaccurate. Or is it that it looks good on their records ?

You have been waiting a long time now but I have to ask. What is HSP ?

HSP = Highly sensitive person. A friend gave me a book about it, said I am one.

I agree, but that didn’t explain all the scarring in my brain & spine.

It’s like folks trying to explain a hand print bruise, as being held by a demon.

Similar to going to church to cure the terminal problems.

Win the lottery & see what types it attracts.

Some people believe & some folks know.

I just go with the flow & listen to a crow in the snow. Listening to the wind blow.

I don`t suppose your real name is Joe ?

Im more confused now. So whats the connection between MS and HSP ?

IDKMS = I Dont Know MS. Ive been diagnosed with RRMS then PPMS and now I was told not sure what type of MS it is.
Basically it comes down to guessing. [/quote]

Gosh Scudger, do you mean that a highly trained neurologist would guess?


Probably not. I expect a highly trained neurologist to be honest with a diagnosis though.

If they are unsure then say so and explain why. I would rather that than an incorrect diagnosis.