Possible MS or something else?

New diagnosis and before diagnosis
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Hi

Apologies now if too much information!

I started having bowel problems at the age of 17, back in 1987. Constipation and a feeling of incomplete emptying. That progressed through the years but intermittent, sometimes absolutely fine. It feels like the anal sphincter just doesn’t want to work.

In 2008 I started with incontinence of urine, frequency, urgency, inability to feel urine passing. That now has progressed to the flow slowing down after starting almost like an obstruction. I have to listen or look to see if I’m finished or not.

In May I started having arm pain. I do HIIT classes 3x a week and have an active job so presumed it was tendinitis or the like. Self treated to no avail so went to GP. She couldn’t tell me what it was so suggested I go through work physio. Been seeing him since, he felt it was not muscle or tendon but ‘nerve irritation’. Given exercises to do but getting weaker all the time. If I didn’t go to HIIT I wouldn’t necessarily be aware of the increasing weakness.

Again, through being at HIIT I started noticing that I was struggling to balance and regularly falling to the left.

Then a couple of weeks ago i developed travel sickness and then a one-off attack of vertigo and nystagmus when I woke up. Was frightening to say the least, hubby thought I was having a stroke.

Saw the GP who did a few neuro tests including walking toe to heel and one where you stand with feet together and close eyes. I swayed to the left both times. Physio tried to get me walking on tiptoes (very hard) then just on heels (impossible).

GP knew I was a nurse and was very open about his suspicions citing MS and a brain tumour as things he wanted to rule out. My aunt died from a brain tumour last year so that was quite scary. He ordered MRI head on 2 week wait pathway, actually got it that day which was brilliant. He wanted MRI spine but said he ‘wasn’t allowed’ to order but suggested I speak to my physio about him recommending one.

Brain MRI completely clear, thank goodness.

That was it from GP, no follow up required. As some of the symptoms are decades old and appear to be similar to MS reported symptoms, hubby and I decided to go private to a neurologist.

Unfortunately their earliest appointment is 22nd November so just have to hang on until then.

Been on antidepressants since around 2005. Work is cathartic for me but work have said I need to self certify for a week when they realised I couldn’t do CPR. They’re going to speak to OH in the meantime. I thought I could go on non-clinical duties in the meantime but was told not possible at the moment.

Feeling overwhelmed, scared that it is MS, scared that it isn’t MS too - if it is that would put me as mild and maybe RR with a better prognosis. If it isn’t, then what is it?

The idea of being incapacitated scares me to death!

Sorry for such a lengthy post x

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I like a straight-talking GP too, but that one must have been hard to hear. Well, at least they’ve ruled out the nastiest things. And it is surely very encouraging that the brain MRI hasn’t shown up anything that looks MS-y, given your symptoms. But in your shoes, I would be wanting a specialist neuro opinion too: that’s quite a history you’ve got there and of course you want to know what’s been going on.

I’m sorry you’re on the bench at work, given that you know it would do you good to be busy. It seems surprising that they’re not keener to deploy you in the short term, but that’s what it’s like sometimes: people are just a bit too busy to think creatively, and it may be that some creative ideas from you would get things moving - I hope so.

Be aware that cases of MS you might have seen in your own clinical experience are maybe at the more advanced stage than most of us. That can really give HCPs the willies when they think they might have it themselves, and I can understand why. But not everyone with MS is in that sort of trouble, as I’m sure you know.

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You’re absolutely right about seeing people at their worst, I work in critical care so really do see the worst cases.

When I first told them about the vertigo I was encouraged to take time off to process what the implications could be. I didn’t want to mess up my sickness record so declined.

I’ve been having headaches and tinnitus for months but being busy meant I didn’t really let it get to me. Now I’m at home doing less it seems more distracting but I’m sure that’s just perception. Been trying to cut down on painkillers too but when I do my arm feels more painful and almost heavy.

I’m still going to HIIT classes but on advice from physio am not exercising arms at all. He said I’m okay to do treadmill & cycling at the gym so I’m going to try and structure my days around that and taking my cocker spaniel fit lengthy walks. I take her for 5-6 miles every day and find the music I play really helps. I think being in nature is a tonic in itself. I can’t imagine coping with not being able to walk and am immensely grateful that if it is MS, it’s only in the right arm. Could definitely be worse.

If I ever need a mobility scooter etc it’ll have all the bells & whistles :joy:.

Thanks so much for replying, means a lot x

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So in the last few days the balance issues, nausea and vomiting have gotten worse. Then had a weird episode of both thumbs going numb.

Headaches & tinnitus are constant companions to varying degrees.

Saw GP today, had bloods taken and tried sumatriptan in case it’s atypical migraines. Unfortunately it didn’t work.

Back to GP next week when blood results are back. Hoping that this might be down to B12 deficiency. I do take lansoprazole so a possibility.

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Indeed. Your comment did remind me of what the neurologist who dx-ed me advised when he gave me the bad news about my aggressive RRMS, 20+ years ago: ‘Don’t go home and widen the doors yet.’

I haven’t needed to widen the doors yet, but even if I had, the advice to live life and try not to see around corners would have been good advice, I think. If you can, just reassure yourself that you are a strong and resilient person and that you will deal with whatever comes along. Things haven’t been quite right for a while, and you have found a way to deal with that, so you know that you are someone who copes. Even if you do turn out to have MS, which I hope you don’t, obviously, you will still be the same person with the same strength and resilience.

I am sorry that you are continuing to be so unwell, and your appointment still some time away. I hope that things calm down soon.

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I’ve had a bad day today but was feeling quite good yesterday.

Decided to start taking high dose B12, just taken my first dose. That way if it is B12 deficiency I’ll be on the way to fixing it a few days earlier, feels like a positive step.

So tired today even though I’ve achieved little. Started the day feeling so rough after a really awful nightmare.

Tomorrow I’m going to be up and out early with the dog then hubby and I are going to look for some house stuff. I’ll take painkillers on time and eat well :blush:.

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Happy to report I’ve had a good day. Only symptom lingering is tinnitus.

Neurology appointment moved from 22nd Nov to 12th so hopefully getting closer to an answer.

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Blood results back except LFTs. All normal except that my B12 is 1188. Bit odd as I didn’t start supplementing until after the blood test.

Hoping to see GP this week before Neuro appt on Saturday.

Google is not my friend, scaring myself to death!

Fingers crossed nothing is wrong but obviously something isn’t right.

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Saw a private neurologist today.

He was happy with neuro exam. He said it’s definitely not MS but sending me for whole spine MRI to be absolutely sure there is nothing sinister going on.

All symptoms had improved until last night when motion sickness returned which made me vomit.

He said he thinks most probably a virus, could be FND but he doesn’t think it’s that either.

Feeling reassured and smiling again. Fingers crossed for a good MRI :blush:

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So spine MRI came back, absolutely no lesions or any kind to indicate MS. Multilevel degenerative spinal spondylosis noted.

All symptoms have disappeared except for the arm pain. No idea what is going on with it or whether it will disappear.

Management have been made aware of my difficulties and are allocating patients accordingly so that manual handling is reduced as much as possible.

I’ve asked for set shifts so that I always have good recovery times, Occupational Health appt made so hopefully they will support this.

Thank you to this forum for helping my understanding of MS, I’m hoping it’ll help me understand those that do have this condition much better.

I’ve no idea if any of the neuro symptoms will return, just have to hope for the best.

Cherry x

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I’m sorry to say this because I know people will disagree but In my opinion, Gp’s are completely and utterly useless.