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Possible MS?

Hello all,

This is my first time writing on here and just wanted to get some feedback / thoughts confidentially from people who have experience of symptoms.

Around 9 years ago (I was 44 years old) and had to leave a fantastic career as had increasing and very embarrassing issues with my bladder which meant that I occasionally had accidents and could not be on the road as was in shear panic all the time about where the next toilet might be. It then extended to bowel issues and depression and following a visit to my Dr who was very concerned with some other symptoms that it might be cancer I had a rapid Endoscopy followed by a Colonoscopy, tests for prostate cancer etc. In the meantime I was put on medication for my bladder and after a year no better so had an endoscopy of my bladder and full investigation / tests. Nothing was found regarding cancer or anything physical anywhere in these areas.

I was referred to an NHS dietician and had to go on a programme of food restrictions as they then though intolerences but it wasn’t that either no Chrohnes disease etc.

Mentally I was become increasingly out of kilter with huge mood swings massively low then massively hyper and elated anyhow the upshot was nothing was found from the tests (these also included Thyroid, Diabetes, Heart, Cholestral, frequent blood pressure checks (which was the blood pressure of an athlete apparently!). My Dr said there was nothing else he could suggest and that was that.

So up to date… My bladder / bowels are always a nightmare I had to move into an office job so can get to a toilet very quickly. In addition over the past few years I have lost all interest in sexual relationships, my partner of ten years is completely devastated as its been over three years since the last time and she thinks I don’t love her anymore as prior to this I was the complete opposite. I can’t go out anywhere without thinking about where potential toilets will be and therefore it has meant I have had to refuse trips / evenings out sometimes as I just know an accident will happen.

Over the past two years I have developed what can be described as intense burning / needles in parts of my hands and forearms and for quite a few years I develop numbness in my fingers eg when driving and have to pull over and shake them a lot and wait until they feel ok again.

My partner takes the mickey out of me regularly as I find it impossible to sit still my legs keep twitching / moving as they start to feel really uncomfortable like the muscles are tightening up I get woken at night around 4-5 times to go to the toilet or because of sensations in my legs.

Now over the past few months I have been getting increasingly unstable at times whilst walking. It can happen soon after sitting down (or as when out the other day) I can walk for say a mile and then it feels like the ground is moving away from me and I am not connected to it at all and when this happens I have to lean against a wall or sit on the floor because I know that I am going to just collapse completely. I have checked my pulse when I feel like this and all is fine there. The other day at work I nearly fell into a load of equipment so lay on floor and put my legs high up onto a chair, I do not feel sick and the room isn’t moving above me it just feels like my feet / legs are not part of me (so hard to explain). I never feel like this when I am sitting down or just standing only when walking.

My partner is getting really concerned now so please if anyone can give me any thoughts on the above I would greatly appreciate it.

Thanks you, Charlie

Hello Charlie

We can’t tell you whether your symptoms are/could be MS as there are a huge number of disorders that share symptoms.

But, what I would suggest is that you see your GP again, take with you a list of symptoms that you feel are connected, together with details of when they started and how long they’ve lasted; whether anything has improved or deteriorated over time.

See what s/he thinks. It’s likely that the doctor would refer you to a neurologist. Given that you seem to have ruled out an awful lot of other things, seeing a neurologist would be a logical next step given your symptoms.

I don’t think I’d necessarily suggest to either your GP or a neurologist that you are wondering if it’s MS, just perhaps that you feel there may be a neurological cause.

Best of luck.

Sue

Hello Sue,

thank you I appreciate your reply and sensible suggestion. After having all those prior tests with nothing showing what was causing the symptom at the time I felt like I had wasted a lot of people’s time, money and effort and also felt guilty to ask again but since the more recent additional developments of instability which had resulted in me nearly having an accident at work, restless legs, burning in hands and also strange sudden arm movements I guess I need to go back to him.

i might take my partner with me as she would probably tell him more than I would as I clam up / feel awkward discussing stuff with Dr’s.

kindest regards, Charlie

Hi Charlie,

Sue is spot on; it is impossible to diagnose over the internet. Your symptoms do sound neurological; so very important you see a Neurologist.

If you have an MRI it should be of the spine. You see a lesion/s could exist interrupting your sacral nerves; see map http://www.makoa.org/scimap.htm

George

Hello George,

Thank you for the reply and the link - I will make a point of seeing my Dr or maybe one of the female Dr’s at my surgery as I would feel more comfortable talking to them.

I know this probably has no bearing at all but there is not one person in my families past that has had MS. However I have had relations (my Father, Grandfather and others close members) that have had Motor Neurone and Parkinsons disease. I know that I have neither of these conditions as am very familiar with their symptoms and how they develop etc.

Kind regards, Charlie

Hi Charlie

It’s always a good idea to take someone else with you to appointments. And taking your partner is definitely the best plan. She’ll have ideas of her own, will remember things that you’ve forgotten and will ask appropriate questions. And if she’s been worried about you, it seems very sensible to get her involved in the ‘finding out what the hell is wrong’ stage.

Sue

Hi Sue,

Yes I will definitely take her I suppose at least the Dr can hear it from a 2nd persons point of view to validate some of the things she can like my balance issues, spatial awareness / coordination (which is sometimes very odd indeed!). I don’t know if this makes sense but without feeling like I am unbalanced I keep walking into door frames, hitting cupboards etc etc. The other thing I do not get is that I’m having weird things happening with my memory, my partner initially found it amusing but some of the things I forget have really worried her. I just wish I could put it into words but as an example she was talking about some people and I had absolutely no idea at all who she was on about, the more I tried to connect / think of these people she was describing the more I had like a total blockage in my mind. I could not connect the places she said I had met them to seeing them and talking with them, I became more confused and apparently agitated as was absolutely convinced I had never known these people. I was absolutely convinced that she was wrong and I had not met them and then the next day I remembered the people and the fact that I had met them etc etc a few times a couple of months before.

One thing I don’t get is the numbness / burning in parts of my hands, arms and balance issues are not everyday just sometimes (although becoming more frequent over past 6 months). Would a neurological issue not be with you everyday eg you cant have good days and then back to bad days can you!?

I should add something that I’ve not mentioned before but I actually never drink alcohol, have not had any for over 10 years now so it is definitely not drink related in anyway.

Kind regards, Charlie