with a child on the way the anxiety of my symptoms are killing me.
Since my first post my symptoms consist of the following.
Numb erections / erectile dysfunction
Skin burning , this isn’t localised to one area it moves around my body and gets worse when sitting of laying down.
Tingling / vibrating in both feet (worse when legs are in certain positions and laying down )
Muscle twitches ( had for last 5 years )
various pains through my body , armpit , left knee , ankle , calf , back and hips.
Feeling of shaking when waking up.
And now finally what pushed me over the edge is I have lost the urge / it’s not as strong to urinate . I’m pretty sure they will find something in MRI given all these symptoms. But what is the prognosis , I really don’t want to have to use a stick to talk in the next five years.
Has anyone gone private then swapped over to nhs ?
You should keep in mind that you’ve had one clear MRI and seen two neurologists neither of whom thought your symptoms / examination indicated MS, although I know you’ve been referred for another MRI.
Why not check that your MRI referral is going ahead? Phone the hospitals MRI unit and check they have the referral. If not, speak to the neurologists secretary and ask whether it’s in progress?
With regard to your bladder, I think you’d seen an urologist previously, are you still seeing the urologist? You could ask him/her about losing the urge to urinate. Alternatively, you could be referred by your GP to the local bowel and bladder service.
Your point about not wanting to be walking with a stick, basically you’re jumping the gun a bit there. Thus far, the only person who thinks you have MS, or some other neurological ailment is you. So the chances of you needing a stick really could wait until and unless you get a diagnosis.
You’ve also asked about starting with a private doctor then swapping over to the NHS. This is fairly common, it speeds up the testing, etc. But you’d tend to have a diagnosis from the private neurologist then swap to NHS. Otherwise, you could ask your GP to refer you to an NHS neurologist now, but then you’d be starting from scratch again.
I wish you all the best of luck. You seem extremely worried about your symptoms and your future. I do understand this, but suggest an idea might be to see your GP, talk about all your symptoms and your fears and see what s/he thinks.
Saw Nuro again today and despite describing all the symptoms above he still didn’t think I had a disease. I take you advise and I will listen to the professionals around me until or if they are proven wrong by a test result.
Anyway my MIR is scheduled for Monday 25th Ill get results later that week. I will update then.