Last reply 3 days ago
Newbie with questions

Good afternoon,
I live in a small city in New Zealand and have been RRMS diagnosed for 3 months. I woke blind in one eye in May this year, and in June lost everything below the waist. My MRI in June showed 6 lesions between C6/7 and T8. I also have a longstanding diagnosis of the connective tissue disorder Ehlers-Danlos Syndrome.
In the last 6 months, I have been experiencing variable degrees and variable placement of angry skin.
At its worst, it was all of both legs, lasted 24/7 for 7 days and felt like a cheesegrater had been used to attack my skin.
It roams around my legs although I am yet to get a break regarding my feet which currently are swelling, going purple and thoroughly dislike being used.
I have been on Gabapentin for a while, and have just upped the dosage to 400mg 4x/day and this has helped considerably – reducing the patches to just my feet and where my weight is resting.
Does anyone have any idea what this is, and the usual treatment pathway?
I am also wondering what an MS attack feels like. I am experiencing an unusual cycle of events repeatedly and am wondering if this is a new attack each cycle, or whether it is just normal with MS.
The cycle starts with 3 days dizziness +/- poor sleep. Next is up to a week of much worse skin pain (cheesegrater), followed by full-body floppiness where I have difficulty holding up my head, let alone moving from bed to chair. Is this an attack?
Thank you in advance for any replies.
Pixie

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vixen
1 week ago

Hello @pixiefield, just wanted to say hello and welcome from the U.K. I have been diagnosed nearly 2 years and am doing OK. But, I am still trying to work out what the RR side of RRMS means! I can read all there is about it, but feel it doesn’t describe my case at all. That said, as time has passed I know my own body a lot better and have some awareness of trigger factors etc. So, just to let you know, you’re not alone with your questions! The three most important things: healthy diet, plenty of rest and minimise stress as much as you can Take care x


stumbler
1 week ago

Hi @pixiefield and welcome from the other side of the world.

I’m not medical and I’m not at all familiar with Ehlers-Danlos Syndrome (EDS), which seems to be an inherited condition. Does one or other of your parents have the condition?

Having had a brief read about EDS, it seems that some symptoms also present in MS, which does beg the question whether you do have both conditions.

Angry skin is a good way of describing the sensory symptoms that we contend with :-

https://www.mstrust.org.uk/a-z/altered-sensations

It’s not usual for MS to cause swelling, although this may be a side-effect of the medication. You need to ensure that your Doctor keeps an eye on this and the purple colouring.

As for relapses, the following article will clarify what is, and isn’t, a relapse :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

Hope this helps.


pixiefield
3 days ago

@vixen and @stumbler
Thank you so much for your replies. It is nice to know that I am not so alone in this and your comments are very helpful.
I am looking forward to studying the information in the links over the weekend (I have work tomorrow and am resting up for it).
Unfortunately, there is no doubt about my EDS diagnosis – and apparently the same goes for the MS. I am statistically a fluke – 1:40,000,000 at the top end of the range.
Thanks again,
Pixie

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