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Undiagnosed, and struggling each day

Hello, well this is my first post on here. Maybe I could share a little information and ask if anyone has any thoughts at all.

I am 29 years old, male. and believe I may have MS. I know some information about MS, as my mother has had it for over 30 years but she copes very well and generally does not talk to much about her condition. But a few months back, I was at the point where I could barely lift my legs, to walk or stand. They felt very heavy, I had massive waves of tingling, and felt like they did not belong to me. I also have had issues with my balance being light headed and dizzy. Apart from my legs, I have had other issues, with tingling in my hands, severe headaches, blurred vision in one eye, and general weekness and fatigue.

Several months ago, I was admitted into hospital whilst I underwent some tests. The main being an MRI of my brain and spine (without contrast) and a lumbar puncture. The specialist came back with the results of these both being clear. They never managed to diagnose me with anything and just asked me to rest for a further 4 weeks.

Before this happened, I would consider myself a fairly fit and able person.

Many Weeks on, I have improved somewhat, but still am not fully recovered. I continously have the waves of tingling in my legs, i get twitches and sharp pains in the tops of my legs. If I do more than about half an hour of walking or an hour of driving it gets much worse. My legs ache and I become extremely exhausted.

Some days after work I have fallen asleep almost straight away. My job isnt particularly difficult, just office work. I find that sitting at the desk constantly with these feelings in my legs and arms, its very uncomfortable and I find it very difficult to look at a computer screen and concentrate.

Some other unusual things I have noticed is that I have become quite forgetful. I know this can be caused by MS as my mother seems to have quite a poor short term memory. For example, the other day I went out to my car to get phone charger for a friend, I got to the car opened it up, and stood there for about 10 minutes while i tried to remember exactly what it was I was doing at my car.

I also find myself getting extremely hot and bothered, even on days which are quite mild. I have to wear shirt and tie at work, and find I am constantly having to undo and loosen the tie I am so hot and I have a desk fan blowing on me constantly.

Of course I know people cannot diagnose me with MS until there is evidence, but during the early stages of MS, would it be possible that the MRI and a Lumbar puncture would not show anything up?

And is it true like the neuro said to me, I am at greater risk of getting MS because my mother has it also?

Can anyone relate to the symptoms I am having at all?

I am sorry for the really long post, I do not want to bore anyone I have tried to keep it to the minimum. I am really struggling day to day and people take one look at me and dont realise how difficult I am finding dealing with these problems.

It would be great to hear from any of you who maybe have been in similar situation or have any advice.

Thank you

Sorry i dont know how that posted 3 times? :frowning:

Hiya,

One thing I can definitely say; your problems do sound neurological. Unfortunately this does not get you much nearer a diagnosis.

I’m particularly interested in your headaches. See http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736 as a possibility.

This advises you of the procedure of diagnosing MS http://www.mult-sclerosis.org/diagnosingms.html

Good luck

George

hi, i can empathise with the weakness and dizziness, ((hugs)) hope you get some answers soon

Hi Donny, and welcome to the site

Yes, it is possible for someone with MS to have a clear MRI and a clear LP. The chance is probably at most 1% - so small, but possible.

There are multiple risk factors involved in MS, one of which is genetics. So yes, your mother having MS increases your chances of getting it too, but it is not a massive increase because it is only one factor.

Everyone on here will be able to relate to at least some of your symptoms: this is the home of people with weird things going on, LOL! The thing is that there are literally hundreds of neurological conditions that cause the same sort of symptoms, which of course means that it can be really hard to work out what’s going on.

You haven’t said what the neuro has said about follow up appointments? Or other investigations? I think you should be asking for a wider array of tests - your mum having MS does not mean that you must too; there are other possibilities and it’s important that neuros explore these too.

Good luck.

Karen x

Hi Donny,

Yes, I can certainly relate to most of your symptoms. Mine began last year. I have had nerve conduction tests and an MRI which have come back ok…I have a follow up appointment with my neuro in Nov.

Most days I feel ‘drunk’ although I never drink. I gets tons of tingles…mostly in my hands and feet and also on my scalp. My legs feel heavy…they feel like they aren’t mine. My knees feel weak, my feet feel numb…my wrists and thumbs hurt. …I have tons of symptoms…far too many to mention on here…but yes, I can understand how you feel.

I hope you get some answers soon, I have not been dx yet…and I am still struggling with day to day stuff. People think that because I look ok…then I am ok, how wrong they are.

Take care,

Wendyx

Hi Donny and welcome.

Yes I can relate to some of your symptoms but as others have said, neuro sysmptoms can be suggestive of so may things.

It will take time for the Docs to establish what is going on. No quick answers I’m afraid.

I wish you well.

Clare x

Hi Everyone. Wow thanks for all the posts. I found the information about Hughes syndrome very interesting, and thats something I am going to mention on my next visit. I am due for a follow up app with neuro in 3 months time. I am waiting on the appointment at the moment. In the meantime I may speak to my GP.

I guess its just a waiting game. I’ve been trying to take it easy recently and I think that is helping somewhat.

I feel bad that your all going through this too, its really difficult. I am lucky in that people at home and work are very supportive, so I am grateful for that. Thank you all for your nice warm welcomes on here too.

Hi Donny,

Im 26 and male, I can relate to a lot of this, My MRI showed a Lesion on my brain, my LP showed something to suggest infection, however I have an EEG VER on the 5th and a follow up on the 27th, They need to rule out MS this lesion only confirms parts of my problems.

I have good support too and it is important, everone hear is great, Rizzo is by far the fountain of knowledge so what he says is very true. It could be anything. Try to stay possitive. I was in a wheelchair for a week and admitted to hospital because I couldnt walk, my legs just went no thanks! but im moving around and back at home, (I run my own business from home so I am good) but its hard.

Keep smiling