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Think I might have MS

Hi everyone, nice to meet you. I think I might have MS. I’m 39 and have had ME/CFS since I was 19. Unfortunately, it’s a bit of a dustbin diagnosis, and it makes it very difficult to get anything else taken seriously. When I finally got referred to a gastroenterologist after years of severe abdominal pain, for instance, she said, “Why on earth has it taken all these years for you to be referred?” and I had to mutter something about how I’d been blown off by the GP for ages. Anyway, ME and MS seem to have a very high rate of symptom overlap, and I understand that MS should probably be ruled out if there’s any doubt. The ME is severe, I’m mostly housebound and experience chronic pain.

It’s the new symptoms I’m worried about. In March I collapsed and was taken to A&E with a suspected stroke. They took a few blood tests (difficult as I had suddenly and dramatically dehydrated), did some basic tests like getting me to walk a few steps while supported and look at a moving finger, and then told me that it wasn’t a stroke (good), was perhaps a silent migraine, and sent me home. It was absolutely nothing like any migraine I’ve ever had, and I’ve had migraines since I was 15. They are menstrual, feel like being stabbed in the left eye, with general muscle tension from the shoulders upward, and make me sensitive to light etc. and a bit groggy. This episode involved no pain and started with a strong tingling feeling on the top of my head and my face suddenly turning bright red in a very blotchy way. I lost the ability to walk, collapsed on the bed, couldn’t talk either, could smell burning at one point, and was hearing English as gibberish at the same time. My hands and feet went numb, though that may have been because they were so cold I couldn’t feel them any more. All symptoms were bilateral. I think there was more, I have notes somewhere, including a food diary. None of that was normal for me and it felt like something was very, very wrong. I was feeling off the day before, and the cat was suddenly very protective, including blocking and hissing at my support worker.

Since then I’ve had recurring similar episodes, though thankfully milder. The top of my head starts tingling, my faces flushes, and we know to get me in bed with food, electrolytes, an ice pack on the back of the neck and antihistamines, though I’m totally guessing that the antihistamines will help. If I try to push through it I collapse. I’m guessing I must smell different because the cat does seem to know when it’s happening and gets protective. (Don’t worry, I’m not going to mention the cat to a doctor, I’m just curious about it. And hey, at least I get kitty cuddles.) I’ve been using a migraine tracking app for this, recording my usual headaches and occasional migraines too while I’m at it. I can tell you that it happens about once a week, about an hour after I wake up. I had suspicions about Marmite and stopped eating that for a month, but I’ve started eating it again and no problems yet. (The cat is definitely interested in the Marmite.)

I have Restless Leg Syndrome, which was doing better once we got my ferritin levels back up, but has been flaring up again recently. I don’t know if that’s relevant. Plus I got woken in the middle of the night a few nights ago by intensely itching in my ankles, and do sometimes get odd episodes of itching that can be severe enough to stop sleep.

Over the last week I’ve started getting burning sensations in the soles of both my feet, strong enough to wake me up at night. This is possibly correlating with headaches, but it’s too early to tell. I think it started in the afternoon.

In terms of the symptoms listed on this website, here’s a basic version:

Balance, walking and dizziness - yes. I can walk a short distance with a walking stick on a good day, say for a minute or two, but mostly can’t, and am a wheelchair user on the very rare occasions of a trip out. Dizziness and balance problems are an everyday thing by now. I am having to come to terms with the realisation that I can no longer cross a road on my own, as I can barely tell where my own body is, let alone where the cars are.

Bladder - went through a rough patch for a few years but the cystoscopy and bladder dilation helped a lot, and it’s not been much of a problem since.

Bowels - mild problems, though I’ve had some nasty patches, including a couple of fissures.

Eyes and sight - yes but I’m not sure they’re the relevant problems. Can’t read normal size text any more, sometimes can’t read at all, vision will often go a bit blurry, get light/dark patches, though those are usually warning signs of blacking out. My eye specialist retired a few years ago and no one else handles ME-related eye problems. I consider myself mildly visually impaired. I definitely have sensory processing issues, and reckon I’ve got Sensory Processing Disorder/dyspraxia/something on that spectrum (diagnoses seem to vary by country).

Fatigue - enormously, including delayed reactions (typical of ME). As far as I know, my eye problems are a combination of muscular fatigue and neurological. It affects everything. It fluctuates but is always severe. This is the main reason why I get a lot of home care and my partner works part-time.

Memory and thinking - hugely affected for many years.

Mental health - I have PTSD from other causes, and frankly being severely disabled is enough to make anyone feel rubbish.

Pain - yes, including muscle, tendon, nerve and joint pain. Muscular pain’s the worst, concentrated in two hotspots on my left hip and left shoulder. This then refers around, including down to my toes and up to my nose, and the pain is far worst on the left side of my body. I have vaguely been told it’s fibromyalgia but there aren’t any local specialists in it, and no one has examined me for it. Lots of things will set the pain off, including massage (even in a totally different area - massage my head or my feet, I start getting pain in my left hip and left shoulder), lying under a heat lamp (still sulking about this as I get terribly cold and loved basking in it), walking a bit further than I’m up to, and playing the harp (grr) or a small lyre I recently had built for me so I could have some music when stuck in bed (which is only 1.5kg, for heaven’s sake).

Sexual problems - yes. Including nerve pain, is this a thing? My gynaecologist is pretty good, I don’t know if she could refer me for anything. She did refer me to the Pain Clinic, which is a bit notorious here for being awful, and when it was, actually apologised to me afterwards. The helpline guy said he hadn’t heard much about pelvic pain from callers, but then most women aren’t going to discuss that with a random bloke on teh phone. Incidentally, there’s incorrect info in the MS Society leaflet about sexual problems, any idea who I contact about that?

Spasms and stiffness - lots of muscular stiffness along with pain, I’ve found that I need 2mg diazepam in with 150mg fast-acting tramadol to even touch it, usually a second dose before it kicks in, and it’s notable that I need the diazepam as a muscle relaxant, it doesn’t work without that. Not that it’s controlling my pain very well anyway, but we are struggling to find anything that works. I make sure not to take it more than a few days a week in order to avoid tolerance. Occasional jerking movements (particularly bad when I was withdrawing from a few months on gabapentin a few years ago), and Restless Leg Syndrome might be in this category?

Speech - trouble with word-finding and speaking coherently when more exhausted, and also trouble working out how loud to talk if there’s background noise. Some of this is about being neurodivergent and having Auditory Processing Disorder. I muddle words and such.

Swallowing - absolutely fine, thankfully.

Tremor - occasionally a bit shaky when really exhausted.

The thing is, a lot of this is normal with ME, and I am so used to getting the brush-off (including being told, “But it’s perfectly normal for your lips to turn blue, dear!”) that I don’t know where to start. I am thinking of pushing to see a migraine specialist on the grounds that you’re meant to get checked out if your migraine pattern changes drastically. Either this is a drastic change in migraine pattern, or they’re not migraines at all.

I rang the helpline and the chap I spoke to highlighted the tingling, burning and numbness as symptoms worth flagging up to a GP, but that’s if I ask them to investigate MS. I am really worried I will just get blown off again. I am also a mite worried about why I am suddenly getting these neurological symptoms and what is going on, because “well, at least it wasn’t a stroke” only gets you so far.

Edited to add: I forgot to mention that I’ve been having weird reactions to certain sounds recently. The smaller wire harp is right out because the higher-pitched brass strings are sort of painful, it’s hard to describe. (The larger one is out because I can’t handle the weight any longer, it causes a pain flare.) The shower head seems louder too. I tend to hit sensory overload quite fast, but the harp reaction is new.

Also what exactly is the MS hug? I get chest pain now and again, which I was given to understand was a fibro symptom. The front of my chest feels tight and painful. It’s tender to the touch, which is reassuring if you ever get a small part of you wondering if it’s a heart attack (which I’ve been checked for when it was severe), as that doesn’t cause surface pain. I think sometimes it goes with premenstrual breast pain, but I get so many symptoms and so much pain that it’s hard to remember all the details of something I haven’t experienced that recently (not to mention the memory loss).

Nope. Being mostly unable to walk is usual with severe ME, bear in mind. There’s no treatment for ME, so they just diagnose you and that’s it, sometimes with a “lifestyle management” course for the newbies if they’re mildly enough affected to go to it.

I’m still trying to work out what clonus is. I’ve collapsed and ended up in A&E a few times, and that’s included convulsive jerking. On one horrible occasion five years ago, the nurses deliberately let me fall on the floor, twice, and said disparagingly, “That’s not epilepsy!” as if I were trying to fake epilepsy. I think they thought I was drunk or stoned or something. They changed their attitude once my medical file was accessed, but no one has looked into the jerking, no. And since then I wear a medical ID bracelet, as I never want to go through that again.

Hi Batik

I think that posting all your potential neurological symptoms on here isn’t going to take you where you need to go.

I understand your reluctance to ask your GP for a referral to a neurologist, but if you believe that some of your symptoms have a neurological basis, then that is your only realistic route forwards.

As you’ve said, many symptoms of ME/CFS are also present in MS, so there is no chance of someone on this site being able to pick out your potentially neurologically caused symptoms and suggest that indeed you do seem to have MS symptoms. And if they did, it wouldn’t get you anywhere closer to finding out for definite.

There is also no point in someone telling you what the MS hug feels like, because honestly, we probably all describe it differently, we may all experience it differently. This is, as I’m sure you’re aware, one of the problems with MS. We are all individual and experience sometimes exactly the same symptom completely differently.

My advice to you is to see your GP with the intention of asking for a neurology referral. Don’t go to your GP and say I think I have MS. The medical profession hate us self diagnosing. It might be more effective to isolate for yourself the symptoms which you feel may have a neurological cause. Talk to your GP about these and ask for a referral to a neurologist.

If your GP disagrees, and you can afford an initial private appointment, find yourself a local private MS specialist, preferably one who also has an NHS practice. You can run your symptoms past him/her, have a physical exam and see if they agree, that there is cause for further neurological testing. You can then either (preferably) be referred by that neuro to their NHS practice or take their report back to your GP for an NHS referral.

Sue

I’ve spoken to the GP today, and she’s referring me to the migraine clinic. After all, that initial episode was tentatively diagnosed as migraine, it doesn’t fit my usual migraine pattern and major changes are meant to be checked out, so it’s the sensible way to go. Hopefully the neurologist I see at the migraine clinic will be able to work out where to go from there. I’ll ask for an MRI if they don’t suggest one, and I assume that this would show up any signs of MS. And let’s hope it is just a weird form of migraine and not MS! She’s also putting me on pregabalin, at a cautious low dose since I had a rough time with gabapentin, to see if it helps with sleep and/or pain.

Since I’m asking anyway, those episodes I get where my head gets tingly and my face gets flushed also include my hands going red and getting intensely itchy. Does this sound familiar to anyone?