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MS with skin changes?

Hi All, new here and posting really to see how many people have had skin rashes or new allergies prior to or post their MS diagnosis.

I’m currently waiting to see a neurologist after referrals from a rheumatologist, my GP and the Neurologist who performed my EMG a couple of months ago.

During my fourth pregnancy I came down with shingles along my S1/S2 dermatomes. This was, I thought a one off as you aren’t supposed to get shingles more than once right?

Following my daughters birth I quickly began to feel I was in someone else’s body. Psoriasis in my scalp, dermatitis on my forehead, eyebrows and in my ears, stiffness and pain in my hands, the return of pre pregnancy plantar fasciitis, such fatigue that I was falling asleep in the early afternoon, spasms below my ribs where my gall bladder once was, mouth ulcers, bladder infections, and - a recurrent shingles rash in the same place ( I now have a lot of scarring there) I must have had it about 20 times in 3 years. Before you say it this is definitely shingles, every doctor and nurse at my surgery has been subjected to a look at it! They all agree it’s zoster not simplex.

After about 2 years of feeling progressively worse, I got, progressively worse. Last summer I had a run of all my usual symptoms but they were closely followed by an episode of body weakness that lasted 2 weeks. It was predominantly in my legs but if I tried to pick my toddler up she’d slide right through my arms. My GP ran blood tests thinking it was a virus and tested for a lot of other things too. Everything, including my vit d3 and b12 was ok.

I got better following the weakness, but I never got back to full use of my legs. I can walk pretty well but at times it’s like walking without any shock absorbers in my feet and the ground feels bumpy when it isn’t. My legs are incredibly stiff and slow down the faster I try to go. I also have times where I trip and can’t lift my toes off the ground on my left foot or point them.I was also left with urine urgency/incontinence that arrived a week after the weakness set in and chest pain, occasional breathlessness and sometimes feeling that someone has their fist in the centre of my chest and occasionally turns it. There has also been a return to what I assumed were normal pregnancy symptoms ( at least for me!) lower back pain, weakness in my groin muscles and episodes where I alternately laugh and cry uncontrollably for about 5-10 minutes ( usually related to frustration) I get episodes of sharp pain behind my right eye and occasional flashes in my left. My right eye has some vision loss in the last year and I now need glasses. I’ve become somewhat emotionally withdrawn and I find it awkward to make conversation with friends, it seems like my easy chat has gone. I also struggle to think of anything other than the matter in hand and I get agitated when asked to do so. Word retrieval is not what it should be, not just names but descriptive terms too. If I can’t remember someone’s name, I can’t even recall the right words like ‘man’ ‘blond hair’ to explain who I mean, even if I’m staring at him!

i was referred to a rheumatologist who didn’t have any real suggestions to make, the obvious autoimmune diseases like coeliac, lupus, dermatomyostis having been excluded by blood tests. He did however test to see if I was HLA B27 positive ( which I am) and book an EMG. A second rheumatologist has excluded Spondylitis because I can touch my toes…The EMG found some myopathic features in my lower limbs.

Since last summer I’ve had four episodes of particularly bad weakness/heaviness. At Easter my partner called an ambulance because I’d lost sensation and strength down my right side. That episode lasted about 4 days, feeling like the side of my face had been slapped and stalling the car when I felt ok enough to drive. Only 6 weeks later and I’m coming out of yet another episode which began with the now usual chest sensations, minor trips, occasional gait changes and then about four days of progressive weakness and heaviness in my lower half . These last two episodes have also included electrical current sensations in my left thumb and some muscle spasms that can be seen in my hip and under my shoulder blade. I’m also 3 days into a particularly bad flare of shingles where the whole previous scar has become inflamed and blistered.

I’m trying literally everything I can in order to help my symptoms. I see a physical therapist for the tightness in my legs and shoulder (I’m prone to times of painful weakness there too, can’t lift head off pillow without painkillers etc) and he’s given me exercises to re-engage the arches of my feet which just don’t work anymore. According to his special scales I transfer an extra 3kg of weight to my left side as I stand which no doubt contributes to aches elsewhere. I’ve also cut out obvious starches and most dairy and take a good multivitamin. Since changing my diet the benefits to my skin( goodbye dermatitis) and energy levels have been obvious and make it easy to keep going in that direction. It seems though that although I can help myself feel better in between episodes, I can’t stop them occurring, they’re getting closer together, and I’m pretty much praying the neurologist can help me.

I’d be very interested to hear if anyone has been diagnosed with MS following a similar history?

Hi,

I’m pretty sure skin problems have no bearing either way as to whether you have MS. It does not cause skin problems - except very indirectly - e.g. pressure sores due to lack of mobility.

So the skin problems could mean you don’t have MS - i.e. the whole lot is attributable to something else - OR, unfortunately, that you have MS and something else. People with one auto-immune condition tend to be at slightly higher risk than the general population of having one of the others, so it’s not that uncommon for someone to have two or even three auto-immune conditions. So it could be that no one thing is causing all of it, and you in fact have several things going on.

I’ve certainly never heard that you can get shingles only once. I thought it was not uncommon for people to have flare-ups throughout their lives. My brother’s partner certainly claims to, although I must admit I don’t rate her grasp of medical matters very highly, as she believes you can get a diagnosis of MS simply by “whining a lot”. If she’s as clueless about her own conditions as she is about other people’s, she may be quite wrong when she claims to keep getting shingles. But I’m just sharing my limited understanding.

Tina

Dear Gostarchfree

im not a doctor but I do have a little medical knowledge and agree with Tina that shingles is an infection that can keep recurring. The virus that causes shingles is varicella zoster which is related to the herpes virus. These virus’s retreat to nerve ganglia where they remain dormant until activated. Sun light can be a cause of herpes(cold sore ) to activate andd stress/being under the weather with something else can trigger shingles.

Lesley

My son has MS since 2012. Since he had shingles outbreak last year, he has constant skin temperature issues…hot and skin clamy cold. Also exertion air hunget.All testing negative.Anyone else with this experience?please my son was active and now doesn’t leave house…

hi coleman

you have posted at the end of an old post (2015) and will probably get more and better replies if you start a new thread.

there is a “new thread” button about a quarter of the way down the forum pages.

i’m assuming he has been to see his gp.

it must be very uncomfortable having hot then clammy cold skin.

maybe the gp could refer him to a dermatologist.

carole x