Suspect MS but looking for any advice.

Everyday living
1

Hello all

i am currently undergoing investigations for my neurological symptoms. I am 36, male. I am quite concerned about the range of the symptoms and speed on their onset. Would people here may have some thoughts they would be happy to share.

In 2022 I had what they believed was Herpes type 1 seemed to flair up during a time of stress. Of course Dr Google has said stress and herpes/EBV can cause MS. I’ve even read those of an anxious nature may have more likelyhood with MS?

This all cleared up and then one day I couldn’t see driving, the sun was blinding no matter what I did. Turns out I got keratitis in my eye/

In March I noticed bleeding from my bowel, left it a few weeks didn’t clear up more stress then the worst IBS I had. Really gassy, painful cramps, dry mouth, acid reflux never had it like that before…

Diagnosed with a polyp and diverticulosis of which it is mild. Felt relieved but couldn’t explain the bad IBS. A week passed and I started to feel better. Weirdly three days before the colonoscopy I felt dreadfully unwell. Then it passed two days afterwards.

Three weeks ago in June I started getting dizzy, then tinnitus in one ear, then the other. Was prescribed bethahistine. Done bugger all.

A week ago a sudden pins and needle sensation in my finger, that then went to my hand, then other hand and both feet. This has cleared up the next day.

I sometimes feel like a burning sensation in my head and always feel unwell waking up. Sleep has not been the same often disturbed. I am starting to feel quite ill with this and I don’t if it will let up I am worried this permanent. No idea how to cope with being dizzy for the rest of my life. it is greatly affecting my appetite and weight loss.

Blood tests today won’t know for a few days. Fast tracked private neurologist for two weeks time but not the MRI just consultation. For the MRI what should I ask for? I hear there are different MRI scans you can have, with dye etc? I’d like to get the results first time if I can but not possible I know.

So my main worry is that it may be PPMS. I had read PPMS tends to starts less suddenly and subtlety like my dizziness then building up of features and gradually shows up rather than coming in all at once? Is it still possible I have RRMS? The bowel issue went away as did the tingling. Are initial/first/early flare ups in RRMS likely to last for a month or two before evidence of any remission? I just have symptom after symptom ever since this herpes outbreak which I don’t know where that came from. There is so much praise for MS treatments but when you look close there is nothing good for PPMS really.

I am bracing myself for an MS diagnosis soon, if not that what on earth else could it be? so any help or support will be gratefully received.

thanks

Ryan

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Hi Ryan

There’s a lot going on there!
Obviously, not having any answers can make it easy for the worries and thoughts and unanswered questions and endless What if’s to whirl around our heads I know this is easier said than done, but it would be beneficial for you to take control of those thoughts. Get out into nature. Breathe deeply and listen to the birds and the wind rustling the trees. Make a list of ten things you’re thankful for every day. Write down how you feel. Talk too a trusted friend about how you feel, or call the MS Society helpline.

I’ve never heard the claim that anxiety makes you more prone to MS, and i very much doubt it. While Dr Google can provide useful info, there’s also a lot of nonsense out there. There’s plenty of sound info on the MS Society homepage.

It might be helpful to write down your questions for when you see the neuro. They’ll know exactly what type of MRI scan you’d need

And, of course, keep coming on here and asking any questions you may have, hopefully someone will know

Dan

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Most people have been exposed to EBV, most people have stress in their lives, most people don’t have MS. IBS is very common, even among men. Most anxious people with cranky guts do not have MS. (I do, admittedly, but that’s my problem, not yours…)

I have no idea what is the matter with you: my point here is that neither have you. Please keep an open mind as you approach your consultation with the neurologist. It is your job to give a clear account of what has been going on. It is her or his job to work out what is wrong.

Good luck with it all.

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Thanks Dan. I’ll try some of these suggestions.

My mind is just racing all over the place. To I can’t cope to I can do this.

It’s all just been very sudden and I’m in some state of shock.

Let alone a diagnosis.

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Thank you, no I don’t know but pins and needles is a neurological condition and nothing good can come from that whether it’s ms or not. It’s still mainly in my feet just pin pricks.

I shouldn’t jump to conclusions.

Just one day at a time. I know.

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