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referred to MS specialist and Q re: PPMS

Hi,

I used to hang about in new diagnosis a fair bit earlier this year, as suspected ON in Dec 13 led me to the neuro and further investigation of my left sided muscle symptoms which had previously been dismissed when it first appeared in 2011 .

So to summarise suspected ON in Dec 13, Jan 2014 I had L’Hermittes and the appearance of obvious dorsiflexor weakness. In May I had a brain spine MRI with contrast, when they found several areas of T2 hyperintensity at c5/c6, lower area of spine was too poor to interpret due to my movement (I was only breathing!), clear brain and no contrast enhancement.

I went on to have 2 x VEP, SSEP and the audio one, all neg. Then followed by neg Lumbar puncture and neg NMO antibodies.

I was told at the last neuro appointment (before my LP) that if the LP was clear and so were the blood tests it would be assumed that the Sjogren’s Syndrome I already have is the cause of the transverse myelitis , and I would be referred back to rheumatology for further treatment.

I knew that my bloods and LP were negative thanks to my GP, so when I went to my neuro appointment yesterday I thought I knew what he would say. However, he completely changed his mind and has now said he wants a re-scan with contrast, and he wanted to refer my case over to the MS team. I was a bit shocked, and I was on my own so I didn’t ask enough really.

Having got home and thought about it, I have realised that the only thing in my opinion which has caused the change of heart is that I told him it seemed to me my leftside weakness and dorsiflexion was worse, and he then examined me and then we sat back down and then he said this change of heart.

I racked my brains and now it has just dawned on me that maybe he is thinking its possibly PPMS? Not really sure what I am asking, but wondered if any of you coould shed some light for me? Thanks :slight_smile:

Hi

Did you have an obvious attack at any time like sudden numbness or weakness. If you did then this would explain the TM. TM however would not cause vision issues.

Sjogren’s Syndrome can cause progessive neuro symptoms. I read an article about people being DX with PPMS when in fact it was sjogrens and neuros very unaware that it can cause progressive neuro symptoms. There is I believe treatment that you can get.

I am in limbo with PPMS having been mentioned along with TM. I have had no symtoms neck up. I have a lesion C4/C5, negative LP, clear brain MRI and VEPs. My neuro is very reluctant to DX MS with a negative LP.

The latest theory on me is that because I had inflammation of my cervical cord due to radiation therapy in 1990 and past history of CNS infammation can cause early age related neuro degeneration

To be honest I think it is more that likely due to the sjogrens.

I hope this helps xxx

Moyna xxx

Hi Moyna,

Thanks for your reply. I am sorry to hear you are undiagnosed at the moment - it can be a long journey I understand…

The TM has caused weakness and i think spasticity on mainly my left side though I think the other side is affected too. I never had sudden weakness or numbness, but I first noticed a slight weakness on my left side in 2010 which progressed over a period of a few weeks, and then over the period of a year or so, reduced in intensity, never going, but becoming more liveable.

Having had a neuro who was very dismissive of these symptoms and in fact sent me off down a completely different pathway, I ignored it until it worsened again after the suspected bout of ON (it was about a month later in Jan 14) I noticed I was having electric shocks when i bent over and that I couldn’t walk on my heels, the weakness was worse, and I was told my reflexes became brisk on the left side. I can’t say the change in weakness was sudden, but the L’Hermittes was, which lasted about 2 weeks, and alongside it and ever since, came lots of weird paraesthesia like water droplets, sensations of my foot being in a cold puddle things like that and they have stayed varying slightly in instensity/frequency. My physio noticed some numbness on me and difficulty perceiving the difference between sharp and blunt.

So in terms of the TM I have had gentle declines into “relapse” followed by a slow improvement then a plateauing. Not the sudden attacks. I have also had quite a lot of symptoms above the neck, some medically confirmed some not: - double vision for a time, eye muscle palsy, nystagmus, periods of vertigo, ice cold patch on scalp, though my brain scan was clear.

The thing was, I have been told about the Sjogren’s link and was fully expecting to be discharged to the care of my rheumy to “treat” the Sjogren’s as I had read and been told the same information as you re: the Sjogren’s mimic, so it’s not my neuro not understanding.

I really do hope it is Sjogren’s becasue as you say there are at least treatments to try (they basically suppress your immune system to try and stop it attacking).

Thanks again Moyna,

Leah :slight_smile:

It’s not easy diagnosing this stuff my DX took ages but it was over twenty years ago and stuff has got better since then.

Good luck.

Don

Hi Leah, if it was PPMS you would not have had that period of improvement. I reckon they might send you for a lumbar puncture and if negative it is definately the sjorgrens.

​I really dont think it is TM as you have symptoms neck up. TM is a one-off attack of the spinal cord and should not cause symptoms in the brain.

Moyna xxx

Hi Moyna, thanks for your input, sorry if I was not clear but I do have TM as diagnosed by the neuro, it’s not whether I have had TM, for it was confirmed on the MRI and symptoms, it’s the cause that is under question, whether it is caused by Sjogrens or MS or something else entirely.

My understanding is that the symptoms I have above the neck region are not caused by my TM, but that they are neurological, presumably (but not necessarily) caused by whatever caused the TM…

I have already had a negative lumbar puncture, but despite this they are still referring me to the MS neuro, that’s the confusion I have, and was just wondering whether it was a suspicion of PPMS that precipitated that decision. Wish I Bloomin asked more on the day! (Isn’t that always the case though) :slight_smile:

I guess I will find out more once the referral comes - I should know better than to second guess these things!

thanks again,

Leah :slight_smile:

Hi Don, Thanks for your help also, Leah :slight_smile:

Hi Leah, I reackon that they are being very careful and doing all this tests which are good. As there is no test to actually prove of disapprove PPMS in my opinion I would ask for the standard treatment that they give for people with sjorgrens and neuro problems and see if that works. The alternative is nothing as there is nothing to treat PPMS anyway. If you have a negative LP then I would be 95% sure it is the sjorgrens. Apparently only 5% of people with MS have a negative LP. Some neuros (prof g at Barts) thinks negative LP MS should have its own classification.

I am not a doctor by the way thiose are just my thoughts

Moyna xxx

Hi Moyna,

Thanks for your honest response. I had thought the exact same thing, and was so relieved when my lumbar puncture cam eback negative because I thought I can finally begin to draw a line under this and focus on stopping it getting worse. I was looking forward to having some kind of discussion with the doctors to decide what to do and feel like I was actually doing something, which is why this MS referral was such a bolt out of the blue…

But you are right, at least they are being careful. With regard to the LP neg thing, it looks like I a, destined to be a bit of an odd case anyway - TM in Sjogrens is really rare - less than 1%. If I understood it correctly that is what the neuro was trying to say to me: One the one hand, the damage/symptom picture I have is consistent with MS but the results aren’t… On the other hand, it is very rare for Sjogren’s to cause these issues. So I am sitting neatly in the middle of the two…

Thanks for trying to help me understand, In am trying to just aloow it to happen - me understanding or not at this point won’t change anything…

Thanks again, hope you find your answer soon too…

Leah :slight_smile:

Leah as you’ll have seen with all the posts about the dx of ms it’s really baffling. Like you I’d been reassured by my Neuro that I didn’t have ms and it was like a big weight had been lifted, then on my next consultation I was hit with the news that it was ms and then he described why he came to the conclusion that it was PPMS. I was totally shocked and too stunned to ask questions or do anything. I don’t think I’ll ever forget that moment, very similar and distressing like yours I imagine.

Fortunately you’re being referred to a team specialising in ms now. I too went to a specialist in the field and they have seen so much, they know what to look for and more importantly what to do next. It was the best thing that could have happened to me, all of a sudden I was taken seriously, my symptoms were dealt with and I got referred to an ms nurse, OT, physio, continence nurse, my house was assessed and I got equipment to make life easier.

I know it’s not the group anyone wants to join but the ms team should at least give you an answer, be it yes or no. Try to look at it like a referral to any specialist for a dx. I hope for your sake it isn’t ms, but if it is it’s not the end of the world. Life with ms can be good and fulfilling even if it’s different to what you hoped it would be and the people here are lovely and supportive too.

Take care and please let us know how you get on.

Cath x

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Hi Cath, you are right it is that moment, you are expecting one thing, and then they hit you with something different and anything they say after that just washes over you. He even dictated the letter in front of me, but can I remember what it said? Nope!

now I’ve had chance to absorb the news it does sound like good thing, as you say, they should be able to give me an answer y/n…

I have booked an appt with my GP for tomoro so she may be able to shed more light, and have booked a private Physio appt for Monday, so trying to help myself :-)thanks for your reply, Leah :slight_smile:

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