Forum

I'm in limbo and could do with some advice please

I’m in limbo and could do with some advice Hiya I’m Patrick 32 years old in January this year I started all of a sudden with the content urge to wee this went on for a week then I was in hospital and cathatrised and no tests (blood urine) came up with any answers. The cathata came out the following Monday and during the next week everything eased off, a couple of tests was done on my bladder 2 weeks after which was all fine. The time came and went so I thought nothing more of it. The weeks went on and then I started with cold shivers (like the saying “someone’s walking over my grave”) even though I had thermals on heating on and sweaty but not feeling ill as such. Then came my dead left arm and right leg along with the ringing in my ears muscle spasums, my legs became tight and felt like I was walking through mud! During all this I was seeing my doctor who after doing all the urine/blood tests that came back clear referred my to a neurologist who after an examination and listened to my previous symptoms sent me for an urgent mri scan as he suspected m.s. three weeks later I’d had my scam and was back at the neurologists who said the mri was normal so I didn’t have m.s he said no more test were required and maybe it would be some sort of migrane so I started on pizofen for that. 3 months later I was back and between that time I wasn’t too back had the odd dead leg tinnitus muscle spasums so he then suggested it’s maybe not the migranes but said in his explanation my hardware (brain) was fine but it was my software (brain signals are off) I was then sent off again for another 3 months in which I’ve had a pretty bad time of it again with my water works constipation dead leg tinnitus, tight throat, tight leg muscles. I saw the neurologist on the 5th of November she didn’t really ask much about the list of symptoms I gave her she did a basic examination then said about another M.R.I In 6 months that’s a year after my first one she also said about stress and anxiety but I’m not stressed at all! Only in the fact they keep asking me and when my symptoms are bad which is only natural right? Is this all normal? Anyone else been there? Advice would be great full! Regards Patrick. Top

Hello Patrick and welcome,

so sorry to hear that you are going through this. Have you had any other tests like a VEP, nerve conduction test, lumber puncture as these can assist in a dx. Of course there is also the possibility that it could be something other than MS as other illnesses mimic each other. May I suggest that you be referred to a Reumatologist as well to cover all areas. Hope you find the answer very soon.

Janet

x

Hiya Janet and thanks for your reply. I’ve had no other test than a mri in may this year which was normal, I’ve asked about other tests but they only seem keen on another mri in six months from now so just a waiting game! I’ve had two episodes of my symptoms and now and the in between times just minor but like muscle spasums,tinnitus mild dizzy/off balance and constipation :-/. What’s a rheumatologist? Excuse my ignorance lol. Regards Patrick.

Hi Patrick,

A Rheumatologist is a person who deals with arthritis, Hughes syndrome, APS and Lupus all autoimmune diseases as is MS, I onlyi suggest it as another avenue that could possibly help. You would need a referral from your GP. Whatever you do is don’t give up until you get an answer. Hope this helps, good luck.

Janet

x

1 Like

That’s a great help I’m seeing my G.P tomorrow night so I’ll suggest that. I know I’m not stressed or anxious about anything! And I also know there’s something not quite right with what I’d say as 2 episodes lasting 3/4 weeks and the in between all the muscle spasums, tinnitus etc etc etc. This all literally started (that i noticed) on the 12th of January at 11am when the constant urge to wee started I’ve not been quite right since! Before I was fit as a fiddle! Thanks for your advice it’s nice to chat to someone who understands! :slight_smile: x

Hi,

Do let me know how you get on, please.

Janet

x

Hiya Janet I saw my doctor last and mentioned the rheumatologist so he’s referred me to one too have a look into my problems. He’s also said about the possibilities of fibromyalgia and cfs/m.e as another avenue while I wait for my second mri scan what do you think to that? Regards Patrick. X

hiya patrick

sorry to hear that you’ve been having problems, had tests but still in limbo.

all the other possibilities are very similar to ms.

the main thing they have in common is they are all invisible illnesses, as is ms.

most people cannot see anything wrong with you but that doesn’t mean that you have no problems.

a sense of humour and a strong character will see you through.

good luck

carole xx

Thanks I really appreciate your reply I know myself there’s something wrong whatever that maybe! It is really hard for others to understand as I “look” perfectly normal it’s only my water works trouble that really makes anything stand out! I would just love an answer to what’s causing all my problems I can cope with whatever it is. Patrick x

hi again patrick

i forgot to tell you to try your nearest MS therapy centre (likely to be in your nearest city).

these places are brilliant.

you can access a wide range of therapies.

i go to trafford park (just outside manchester) ms therapy centre for HBOT - Hyper Barric Oxygen Therapy.

one of the benefits is better bladder control.

also they are brilliant meeting places where we chat, drink coffee and eat cakes.

the best bit is everyone knows what you are going through.

you don’t have to have a diagnosis (not at trafford anyway)

carole xx

Cheers I’ll have a look I live in hull so would of thought they’d be one. So it’s a place to go that would help with my symptoms? I’ve had 2 bad episodes but after the first I’m left with a few minor constant symptoms like tinnitus muscle spasums the list go’s on but I can live/work with these. Patrick x

hi pat

the ms therapy centre offer things like reiki, massages, acupuncture and other alternative therapies.

some can help alleviate symptoms.

it’s the company of other people with ms that enables you to share your experiences and someone may have a suggestion on what to try.

carole xx

Hi,

Pleased to hear you are now getting somewhere. Hope you get an answer quickly.

Janet

x