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Could I fit the PPMS picture?

Hi folks,

5 years ago I had an attack - numbness down left side of body and weakness down right and l’hermittes. Felt absolutely exhausted, like the flu with no temperature. The GP thought it was a virus. After about 6 weeks I felt a lot better and went skiing. I think I was 95% better. Then neraly a year after the attack I noticed that when I went for a long brisk walk my right ankle felt weak. This gradually got worse over 2 years so went to see neuro. An mri and LP as done in Feb 2011. MRI showed lesion in cervical cord and LP was clear. They were both repeated again in Mar 2012 and LP was again clear and there appeared to be no change in MRI. Yet the spasticity in only my right leg seems to be getting worse. I have had absolutely no other symptoms of numbness, l’hermittes etc since that original attack. Neither have I had another relapse. I have had blood tests galore. Neuros are baffled. I really dont think I fit the picture of RRMS. Does it fit the picture of PPMS - I just dont know!

Thanks Moyna

Hi Moyna, I don’t really think it sounds like PPMS as you mention “attacks” and PPMS is not characterized by attacks but by a gradual progression of symptoms that worsens over time. However, there is a lesser known type of MS called Progressive Relapsing MS which features both attacks and progression. However, I am no neuro and cannot give you a well-informed enough opinion. I hope that the neuros get to the bottom of what is wrong! Teresa xx

Hi Teresa, Thanks for the reply. I have only had one attack - the initial one 5 years ago. Progression of spasticity in one leg only after that. No other symptoms at all.

Moyna x

Hi again Moyna, Perhaps other PPMSers will give you their experiences too but mine did not start as attacks as such but symptoms that were very mild to begin with and have gradually worsened over about 6 years. In 2011 I did have a couple of new symptoms that could be seen as “attacks” and my neuro wondered whether I had PRMS. However, I recovered from them almost completely and have had nothing like it before or since. Therefore, I still have the PPMS label! Hth, Teresa xx

Hi Moyna, like Teresa mine started with mild symptoms that gradually got worse. Sometimes a symptom will be worse for a few days, but the general pattern is steady progression.

I think it possible (and I’m not an expert Moyna by any means) that you had CIS… Clinically Isolated Syndrome… that is an MS like attack that will sometimes go away altogether but will sometimes lead to MS.

Without getting a positive LP I can see why the neuro’s are stumped… although sometimes when symptoms are very MS-like and there is absolutely no other explanation, but LP or MRI are clear, they will dx ‘possible MS’ or ‘probable MS’.

Terrible for you to be stuck in limbo and hope you get some definite answers soon.

Google ‘Clinically Isolated Syndrome’ and see if it feels right.

Pat x

Hi Moyna, I think what Pat says sounds more like it actually. I had forgotten that CIS can be a one-off attack and then sometimes lead to MS itself! Teresa xx

It might well be Moyna but, from what I’ve read, GPs and Neuros tend not to equate sudden attacks with ppms, but more likely to do so with rrms.

However, since things have been getting steadily worse over the past few years, your spasticity has increased etc does sound more like ppms.

Like you, I’m sort of in limboland until my second neuro apt with an ms specialist next week. However, my cervical and brain mri’s both showed numerous lesions but my lp was, quite surprisingly, clear.

Thanks everyone. I have wondered too about CIS or transverse myelitis. if I did have this could it somehow trigger spasticity some months later. I have read that spasticity can appear months after damage has happened. Does it they follow a course until it reaches it’s plateau? To complicate matters more I did have radiation therapy in neck area for hodgkins lymphoma in 1990. At that time I suffered a bit from l’hermittes. I was told it was transient myelopathy as a result of treatment. It only lasted a few months. The first neuro 2 years ago thinks that I have delayed radiation myelopathy. The second neuro thinks that is impossible!

Thanks again

Moyna x