Was DXED with PPMS

[Juliew19673]

When I was DXED this May they suggested PPMS. The neurologist said that she was only guessing - when will they know for sure, what type I have? And how often do most get an MRI? I've only had 1 in May which neuro said "shows the MS signature" so how do they know for sure what type I have?

[Midgey_Midge06]

I get an MRI every year. I am guessing - and seriously only guessing - from what i have heard from others on here and people i know that when ur symptoms worsen and they dont go into remission they can say what type u have.

[Juliew19673 in reply to Midgey_Midge06]

I guess the next question would be - how do you know it's a remission and not just a response to meds?

[Midgey_Midge06 in reply to Juliew19673]

No idea. But i am to understand that SPMS or PPMS dont respond to steroids.

I have been dx’d for 4 1/2 yrs and my neuro still hasnt confirmed if i have RRMS or not so i just assume thats what i have.

[Juliew19673 in reply to Midgey_Midge06]

I have found that the only thing that I've been given that makes an immediate difference is Steroids. It makes everything go away - my MS eraser. So perhaps that is my answer. Thanks Midgey.

[Midgey_Midge06 in reply to Juliew19673]

That was supposed to say they DO NOT respond to steroids. Sorry - MS brain! RRMS does respond to steroids. Thats the remission part.

[kdali in reply to Midgey_Midge06]

Respond as in feel better or respond as in blood brain barrier locks up and lesions are no longer enhancing? I felt better this past time with steroids but it didn’t fix the lesion. 🤷‍♀️

[Midgey_Midge06 in reply to kdali]

Nothing as of yet is officially out there that repairs the lesions.

[kdali in reply to Midgey_Midge06]

I didn’t mean repair lesions. I meant fix the lesion by making it inactive or not enhancing with contrast. Sorry, I should have used a different word 😵

[Midgey_Midge06 in reply to kdali]

Its all good. We all have MS brain 😁

[erash in reply to Midgey_Midge06]

I responded to steroids but/and they now think I have Ppms. You CAN have ppms with and without some inflammation and relapses. There really is a blurred continuum of “types” of MS.

[Midgey_Midge06 in reply to erash]

Ah that i did not know. Thank u for the info.

[bxrmom]

Juliew19673 have you had any other testing besides the MRI? Like evoked potentials, blood work, spinal tap? These all help narrow the diagnosis down. When I first had blurry vision I saw an ophthalmologist and he sent me for an MRI which showed signs of MS so my family dr sent me to a neuro to confirm. The neuro sent me for another MRI of spine, blood work, evoked potentials, and spinal tap. The spinal tap confirmed a dx of MS. If the neuro you saw is only 'guessing' on the diagnosis I would get a 2nd opinion.

Good luck and keep us updated.

Jessie

[Juliew19673 in reply to bxrmom]

I had a ton of blood work. An MRI on my back - really thought I had a pinched nerve from a fall. That was very disconcerting when it showed nothing. Then brain scan and the DX of MS.

[Midgey_Midge06 in reply to Juliew19673]

Ur neuro shud order a spinal tap. Like was said, if this neuro is not be thorough u may wanna get a second opinion

[erash in reply to Midgey_Midge06]

Spinal taps, CSF, does not always show oligoclonal bands suggestive of MS. Mine did not. I can’t recall the % that are +

[Midgey_Midge06 in reply to erash]

I have the report on mine. Its really hard to read. But my neuro did point out and circled how i have Alzheimers in my CSF. That was another fun surprise

[erash in reply to Midgey_Midge06]

Interesting as I thought those CSF biomarkers were still in the research phase and not definitive?

[Midgey_Midge06 in reply to erash]

I dunno. He is a very old, genius, eccentric type so cud be his opinion. I will have to dig the report out again and look at it

[luvhair in reply to erash]

Mine didnt either

[kdali]

They will probably know the type on your follow up MRI if it’s primary...or if you have a relapse before then, then it’s not primary. It’s not common for people to be told it’s likely primary. Most people on treatments get a MRI annually. The treatments are suppose to cause remission, so as long as your exam and MRI are good, then it’s thought to be working. Failing a drug is generally accepted after having two relapses during treatment.

I hope this helps!

[Juliew19673 in reply to kdali]

Thanks and will wait for follow up MRI. I do think I'm responding well to Ocrevus as nothing has gotten worse. I did lose 15lbs, but think that was because of the IV steroids and I've gained back 6lbs in the last month. This waiting game is my pet peeve with MS.

[kdali in reply to Juliew19673]

Hurry up and wait! 😂😑 It sounds like you are on the best treatment that can be offered (only treatment if it is primary) and are doing well 🎉

Please let us know what the verdict is when you find out.

[erash in reply to Juliew19673]

Yay! For the response to Ocrevus.👍

[erash in reply to kdali]

There are clues on the MRI that are suggestive of ppms, like predominance of lesions on the spinal cord vs the brain. But alone, that’s not enuf to make a Ppms diagnosis.

[Juliew19673 in reply to erash]

Yes after getting the brain MRI and reading that I had no lesions on my spine only brain - I was more confused.

[erash]

I’ve had a diagnosis of MS for @12yrs and just last mos the neuro said it might be PPMS. Initially, it was a bit shocking but based on my history of symptoms and MRIs, it made sense. There is so much that is vague with MS, to include differentiating type of ms, that it makes it difficult to get your head around. The good thing is that there is more and more research on treatment for spms and ppms. Wishing u the best 🌈

[Juliew19673 in reply to erash]

Thanks Erash. It is a very vague disease. Next question is how do you know when you are in remission? My best friend called me last week asking "when do you get to the remittance phase?" I do not think I understand this disease yet. I reminded her that they thinks it's PPMS. She suggested bee stings - lol!

[erash in reply to Juliew19673]

Bee stings? 🤷‍♀️

Yes, really no remission with spms or Ppms, just gradual worsening of symptoms but just as it’s possible to have relapses with progressive MS, it seems possible to have remissions. Then I guess there would improvement of symptoms (not necessarily resolution of symptoms).

It is all very vague.

[Juliew19673 in reply to erash]

Yes - bee stings (some nonsense she saw on youtube) I told her to not harass any bees. But I think she and I were thinking that with RRMS that there are long periods that there is not any MS symptoms. We are newbies to MS and are realizing how much we do not know nor, are there easy answers to our many questions.

[erash in reply to Juliew19673]

In remissions, symptoms may improve but they may not go away completely and you could be left with residual symptoms 🙃

[Smartcloud1981]

When I got my diagnoses in December last year. They ran a bunch of blood work, a mri of neck and head. Tried s spinal. I had then met with neurologist. He had another mri done of full back. An evoke potential test done. He is thinking rrms because there has been no progression.

[luvhair]

Every 6 months...30 lesions,no new ones few weeks ago,she said i had tht also ,idk how do they now,exactly my question also..

[YLGram]

Welcome to the club(one none of us ever wanted to join). I've been diagnosed for 27 years, before there were any disease modifying drugs (DMTs). We have come so far since then, but still know so little. Find a good support group (this this good but if an actual rather then web group is near ..GO, be a part).

I am surprised that your nero said PPMS, as time is the best and only true determiner.

I firmly believe that MS really stands for MADE STRONG. Avoid web "treatments" and understand we have no "cure" Once the neuro pathway is broken it doesn't know how to connect it again; BUT the brain itself has a plasticity to it so new connections can be made. (Think of building a new road after the old road has been washed out.)

This is a butterfly disease; it is different for everyone of us on this website. In the world. no two people with MS are alike, have the same course of their disease or respond the same way to the medications.

To work on retraining the brain in movement, & bladder control, √out TheMSGym.com. It has made a huge difference for me (yes I take DMT-Techfidra and Ampyra for walking). Good luck on your new Life Journey, know there are many of us and you too are Made Strong,

[Juliew19673 in reply to YLGram]

I will check out MS GYM - thanks!

[RobertCalifornia]

I was diagnosed with MS five years ago at age 58 by a general neurologist. He diagnosed me with RRMS and put me on Copaxone. I switched to a MS specialist at a MS clinic. I have not had any relapses nor remissions. The MS specialist stated that she believed (four years ago) that I truly have PPMS because I fit the profile well. Male, diagnosed later in life and no relapses or remissions, only a steady decline. She finally wrote down the diagnosis once Ocrevus was approved. She had wanted me on a DMT which is better than none. If I was diagnosed with PPMS insurance would not cover any DMT. I have been on Ocrevus since June 1, 2017.

[ALEXGRN65]

LORD AM SORRY I WAS DX WITH MS WHEN I WAS 14 YEARS OLD NOW AT 52 I HAVE PPMS-1 I DON'T GET SHOTS OR INFUSIONS ANY MORE SINCE MARCH 10 2010, JUST STARTED ON A TRIAL CAPSULE A FORM OF TECFEDERA HELPING A LOT WITH BRIAN THINKING BUT SOME SIDE EFFECTS