Ppms in a more benign firm?!?

Primary progressive MS
1

to cut a long story short …10 years of minor symptoms , dodgy scans etc. Finally diagnosed last Dec at that point suggested a mild ms as I am really well majority of time but damage is increasing on scans … having bladder( major retention and urgency … a real pain.) and bowel issues (constipation ) new sensory symptom which I can only describe as feeling as though I have left my wellies on and I haven’t … never had any major incidents or relapses just increasingly and recurrent niggly stuff e.g. really tired and wobbly with this weather ! Neuro has just written to my gp suggesting he believes I have ppms in a more benign form … it’s come as a real shock as whilst he has never labelled my type before I just assumed it was Rrms in a very mild form …

anyone with ppms had such a slow mild journey ? Is he suggesting ppms as no defined incidents just growing numbers of symptoms … i know I need to ask him these things just could do with a few other views to help me get my head round it before I go back to him in a couple of months

tia

2

Tia . i was like you many years ago. No real problems but small issues . Like you the consultant " dropped " into a conversation i probably had PPMS but only time will tell . Time confirmed his thinking . I do feel that the label does not matter at the end of the day its still MS . i know that this might reduce the medical options but if it is PPMS these wouldnt have worked anyway. My approach has always been one day at a time . All i can suggest is do your research and then ask the consultant .

Just remember even though we are all PPMSers we are all slightly different in symptoms and progression . MS is bespoke not off the shelf .

Good luck and keep well.

3

My ppms has been slow to although there was a period off improvement after steroid infusion they think progresive ms

I have badder problems constipation and other weird stuff occasionally problems swallowing spasms the wet wellies etc

Take it easy george

4

First time I even heard of MS, I was diagnosed with PPMS.

Then told I’ve probably had it 10 to 20 years already.

I think the fact I couldn’t get up off the floor & was walking in circles, was a brain dead prognosis.

Anyone who want’s PPMS, is a basket case.

Yes it may look like, you’ve been kicked out a pub, on Friday night & just got off a merry go round. Believe me, after so many years of slurred speech, cramping body parts, uncontrollable shakes & mood swings like a women on a daily cycle. Those who want a genuine case of PPMS, need to see a shrink.

I’m having to find my own solutions to the problems, to avoid the so called experts & pot heads of this world.

The amount of ex friends, who’ve taken advantage of my health problems. Has shown me, I needed to be around better people. The one common factor I have noticed, is the greed for money. Using any excuses possible to suite their own agenda. Some folks claim anything as an excuse to rob you. I’m apparently dead & belong in a mental institute. All to take whatever they can.

Anyone who genuinely has PPMS, I’m looking for a real cure. One that costs nothing!

I’m experimenting with Apple Cider Vinegar now, usually used by folks who want to lose weight. It’s a form of amino acid, that breaks down the calcification in blood. To evenly distribute nutrients around the body & stops twitching neuritis problems in many health conditions. It apparently clears lymph gland blockages & helps to improve circulation. I’m no expert, if I was, I would of found a cure by now. I’m tapping into the intuitive controller function of the brain. Sense number 6. Known as the pineal gland.

Terry

5

Three you go I been taking the apple cider vinegar for a few days to horrible to take time will tell if it does any good

Maby feel less bloated

6

From what I’ve learned, you need to boost nutrient & vitamins. Basically eat more good stuff, when using the ACV.

I’ll try anything that could work & isn’t grown in a shed of crap.

Some people say the government is calcifying water, to dumb us down. It apparently causes all kinds of problems.

Got some Hemp Oil on the trial menu too. Sick of seeing the advertisers & want to put that baby to bed.

Someone without PPMS isn’t useful in a medication trial, for PPMS.

Happy trials Hilly Billy.

Terry

7

Thanks folks … I was just a bit left fielded by it… So far after 10 yrs of symptoms apart from skiing I can still do most of the things I used to … albeit a lot slower and a bit more wonky ( Pilates was entertaining in the heat !.) so I should take comfort in that … i guess it was just the reminder that this damn disease is nibbling away at me constantly rather than having a rest and I don’t know when or even if it’s going to nibble through something important which will mean I lose function…

never heard those things about cider vinegar I feed it my horses for their joints but not tried it on myself … and yes better diet I really do need to address that … as mine is shocking !

8

Maybe all these horse comparisons to products, are because beef is now horse meat & I like mince meat.

Having it for lunch, with some spaghetti worms & grated cheese. I’m hoping!

I wouldn’t recommend Pilates in heat. Skiing would be far better. Falling would look the norm.

Terry

9

I have PPMS like the above niggley away every day no major loss of mobilty lots of pain,constipation and blader problems,cramps,spasms and terrible shoulder pain and coycx pain.

It nnever goes away my walk is slow and stiff i use a cane outside my cognitive problem’s are an issue also .