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Clinically Isolated Syndrome

Hi everyone. I’ve had symptoms for around 7 years and was dx with ME 4 years ago. Last year I started to go numb. I have a lesion on spinal cord and have o bands in my CSF. I have formally been dx with Clinically Isolated Syndrome - Transverse Myelitis and told that I’m 50% likely to develop MS. The neurologist also said he doubted I’d ever had ME and it was probably the start of MS. My mobility is severely affected as my feet are still “numb” 12 months on. I’ve been told the numbness is unlikely to ever get better. I suffer with chronic neuropathic pain which is helped with Gabapentin and Amitriptyline although these only really help the L’Hermittes and restless legs. I’ve now developed an excruciating itch in my worst affected foot which is driving me nuts!! I’ve reduced my Gabapentin to 5 x 300g daily over the last few months. Should I try upping the dose again to see if this helps? I’m also curious as to whether anyone else has CIS with symptoms lasting for a year plus? Thank you

Hi Pinklady, when did you last see your neuro? I think if you haven’t seen him/her in last 6 months you should try to get another appointment now.

I don’t know a lot about CIS but this does sound to have gone on too long. As I’m sure you’re aware, you well might be looking at a dx of MS.

Also, as I hope you know, MS is not the end of the world. When you’ve had distressing symptoms for as long as you have it can actually come as a relief. At least you know what’s causing all the problems! I’m not saying you do have MS, but I think you need to see the neuro sooner rather than later considering this has gone on for so long.

Itching is an annoying neurological problem. Yes, up your dose of Gabapentin. Take it back up (slowly) to where you were before and see if it helps.

There’s a cream called Double Base which is very helpful with itching. You can buy it on Amazon but also the GP can prescribe it for you. It’s very good and worth a try.

I hope you get some sort of definite dx soon & hopefully something to help.

Take care… and get that neuro appointment!

Pat x

Hi Pat, I will perhaps give my MS nurse a ring next week and see what she says. I’ve already started to up my Gabapentin so will see how it goes. I’m on a down spell at the moment but have just enjoyed a really good month or so, so shouldn’t complain. Thanks so much for your help. Getting a formal diagnosis isn’t scary at all, it is merely a name and won’t affect how I feel. I feel how I feel and getting another name won’t change that. I’m feeling quite philosophical about it all. I have some Diprobase so will try that on my foot

Hello, I was diagnosed with CIS last year after a MRI and the symptoms I had at the time. Ny neuro booked a second MRI 6 months after the first and this showed an active lesion and I then had a second episode so had the diagnosis of MS in January. Like you I wasn’t scared of the diagnosis it was a relief to finally get a name for the pain I was in and then being able to treat it but i still cried my eyes out after the appointment because the possibility then became a reality.

I get really bad itchy skin on my legs which I now put down to the MS and will try the double base cream too.