Possibly PPMS

Primary progressive MS
1

First time post.

Symptoms started early on this year and 8 months later and symptoms are still persistent.

All my nerves under my skin from shoulder down are gone. I can feel a scratch but if push down, can’t feel pressure points - pain threshold is high and not responsive if pressure is applied to pressure points or any part of my body shoulder down.
Symptoms started in January and within 4 weeks, left side initially and moved to right of body.

The symptoms come and go but fatigue is an issue, pain in knee caps and under and bladder retention but I get pains if I forget to go bathroom.

Three doses of steroids in may and minimal change. Ocrevus in July/august and here I am still not 100%.

My doctor is of the view it’s possibility PPMS but specialist diagnosed it as RRMS based on MRIs and lumber puncture. 1cm spinal lesion at c4-5 plus 4 in brain.

The thing is, some symptoms I feel have remitted such as breathing issues but fatigue, gait and the above is still present.

If I leave the house and do minor activities, I find myself in bed for the rest of the day.

Has anyone had similar experience RRMS or PPMS.

I could wake up feeling great and 15 minutes later, it’s a different story.

2

Hi Nrisso.
I’ve had PPMS 25 years, but it took 22 to diagnose.
I have numb areas on my body, which change to sensitive.

Is Ocrevus supposed to bring you 100% relief? It is only given to those who can still walk…and have had PPMS no more than 15 years…that’s me out on both counts!

I suffer from fatigue…wake up not too bad but by 4pm everyday and have zero energy.

Boudsx

3

Do they always know if it is PPMS or RRMS? Seems it is time not to put people in these categories.

4

Hi Bouds,

Thanks for replying.

25 years, how’s everything with you.

We’re you initially RRMS, and what was the reason it became PPMS?

I can still walk and I had my second dose of Ocrevus over a week ago. It has helped a bit but still early days. I was advised the purpose of the medication is to halt or attempt to slow down cognitive decline - it’s seemed that was the neurologists primary goal for me taking Ocrevus. I asked about the impact of Ocrevus in dealing with pains and numbness etc and he just said it does not, only aims to prevent future progression, not existing. Once you take Ocrevus, further brain and mri scans are required to see if it’s effective, I assume over time and comparison the effectiveness is proven or not. Apart from the above, I don’t know too much about the drug. To be honest, I have a GP and a specialist plus I changed specialists a few months ago and the message is very similar. Can’t do much about it, I guess because they can’t predict the path. It’s like a mystery.

The fatigue you describe is very similar to mine. When I do too much the day before, I find myself in bed the whole day. I get tired at about 2 having doing nothing too strenuous the hours before. I try and stay out and about until 3pm but yeah, in bed until the next morning.

For me, the numbness is everywhere and I get pains in legs and burning sensation down my legs and other parts of body. if I push down with my fingers on let’s say my thigh, won’t hurt the deeper i dig in. I went for a massage the other day and I can feel when the person runs their elbow through my back and muscles move but not the sensation or pain. Any similarities?

For sensitivity changes and this is recently, If I place a hot towel on my arm or any part of body, I don’t flinch, dull hot feeling, same with cold. Before all this happened to me, I would react.

It’s a bit scary and I can move but it’s a struggle sometimes and it’s the fatigue that is primarily the issue.

At night, it’s worse, the pains through my legs.

So yeah, that’s what’s happening, how have you dealt with it for so long?

Regards

5

Hi Carol.
with PPMS you get no remission from your symptoms…with RRMS you do.

Boudsx

6

Perhaps you need to read up on MS, disease progression and the types? It is very much the case that disease type needs to be identified, because a suitable DMT needs to be prescribed.

Relapsing Remitting, by definition, comes and goes.
Primary Progressive has no fluctuations, it’s worsening all the time.

However, there is also Secondary Progressive. Sufferers start with RR and it appears to migrate to a progressive form where there is no remission. So you can’t go from RR- to PP-.

MS is all one disease but it manifests itself in different forms. MS is most treatable when there is inflammation and in a few, fortunate cases of RR, treated so successfully that DMT’s can actually halt disease progression and there are no relapses. Conversely, there are instances of Progressive types where no inflammation is evident on MRI scans, and for which no current treatment is effective even though symptoms are clearly worsening. In between, there are progressive cases where inflammation is present and treatments are marginally effective: they don’t stop the progression, only slow it, and then only for a percentage of the people taking the medication.

Ocrevus is prescribed for RR and more recently, for PP with marginal success. For SP, another drug, Siponimod, is licenced. Getting a diagnosis can be tricky as Bouds said. Her diagnosis took 22 years and mine was a mere 8 or 9. Because MS had not even been mentioned in the early years of my misdiagnosis, it was not clear if I had had CIS, RR or if the symptoms were something else. By the time an MS diagnosis was made, I was unquestionably Progressive but which? SP or PP? The DMT’s are different… Gave my MS Consultant an excuse to sit on the fence and adopt a wait-and-see approach whilst my symptoms worsened. Perhaps your experience has been similar?
Graeme

7

Thanks for response. In America it often takes 2 years to diagnose PPMS and all treatment is withheld until diagnosis is confirmed. Drs. are now lying and claiming patients have RR so they can get some treatment. I am 73 and not much research done for those in my age group.