Help and advice please

New diagnosis and before diagnosis
1

Hello all

I have found many of the post on here helpful and the replies informative. I was hoping that some one may be able to help me?

To cut a long story short I am in the diagnosis process and I am very frustrated! I have had an MRI brain that shows lesions, spinal MRI inconclusive due to picutres being unclear. LP was negative. One neurologist said it was definatly MS then another disagreed and said maybe. My reflexes are apparntly brisk and there is weakness in hip flexing and shoulder abduction. Tremours have also been noted.

I have lots of sensory issues, tight banding sensations around waist and back like I am wearing a thight belt…Very painful! This also happens higher around chest and back (right side only). This is scary as I feel I am being crushed. And the pain takes my breath away…even though I am not short of breath if that makes sence?

I have left foot drop and numbness in both feet, my feet also burn and then feel cold and wet.Very odd.

Arms are weak too. I have numbness in hands almost like I have gloves on, a strage fuzzy feeling, then other times I feel my hands are tightly wrapped.

Last feb I noticed my vision was odd…things looked flat and blunt.I was give steriods after three days may vision improved a little.I was refered to an eye doctor who looked at my eyes and said the optic nerve appered OK but right disc was pale, but he felt this was not significante, however he also noted I had lost peripheral vision, and I have no 3d vision whatso ever, no qwounder things looked flat!

I have electric shock sensations through my body when I trun my haed side to side this can go down arms even into hands.

and cramps where I cant even begin to explian with out a blush…this is hurrendous and wakes me at night!

Back to my main question (sorry for the ramble) I have just had a chest infection ( dec) and during that my symptoms really fleared up. Now I am left an excerbation of symptoms. Boiling water sensations on the top of my legs numbness and pain. and my legs keep going into a type of spasum I look like a ballet dancer! It made me fall yesterday…ect ect, do I bother Neuro (due to go again in April ) or GP or just log it and tell neuro in April Thanks in advace.

Mx

2

I’m afraid that worsening symptoms when you have an infection or virus is par for the course for MS and although you should definitely tell the neuro, it doesn’t count as a relapse.

The reason you should tell the neuro is that any new information has the potential to be useful in the diagnostic process. (Having worsening symptoms when you have an infection will point to some diagnoses more than others.)

The electric shocks you talk about when turning your head sound like they are L’Hermitte’s sign. This sometimes happens with a spinal lesion. It is not dangerous and the best way to avoid it is to not do the movements that set it off. If you get it a lot, neuropathic painkillers might help (e.g. pregabalin, gabapentin, amitriptyline).

The tightening around your chest sounds like the “MS hug”. This is caused by spasms of the muscles between the ribs. It is also caused by spinal lesion(s). It is not dangerous either (as far as I know anyway!) - although you feel like you can’t breathe, you can; take it slow; stick to shallow breaths when you have to; try heat to relax the muscles (you can buy electic heat pads fairly cheaply). If you get it a lot, speak to your GP about getting a muscle relaxant like baclofen.

From your description of symptoms, it sounds like you would benefit from a neuropathic painkiller and a muscle relaxant anyway - these would help most of your symptoms. So please don’t suffer in silence. If your GP won’t help without guidance from the neuro, please insist that the GP writes to the neuro to GET that guidance.

What kind of eye doctor did you see? Did he/she relay the findings to your neuro? Did they actually investigate the pale optic disc, loss of peripheral vision, etc? Have you had VEPs? Please don’t assume that all these specialists are actually talking to each other - get a proper summary from the eye referral and get your GP to pass it to the neuro.

So, I guess the thing to do is to see your GP about your current worsening symptoms and ask him/her to write to the neuro to advise him/her of what’s happening AND to ask for advice re symptom management AND to make sure that the neuro has a full report from your vision tests.

Good luck!

Karen x