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Any thoughts?

I've had some fantastic advice from Karen and Jacqui - hope you can help again.

 

To cut a long story short. In 2009 I started with left side facial numbness - Mri clear, LP clear. It continued on and off for 3 years. Was told to 'live with it'. fast forward to Oct 2011 - had severe ON in my good eye, was effectively blind. This was followed be 5 days of IV steroids, MRI (with contrast - full body) and a LP which was only done 4 weeks ago. Again MRI clear. I had a disatrous appointment with an MS nurse. Her attitude was, great, your MRI is clear, not MS and the Neuro will see me in June.I said, hangon, no LP?? Plus by then I had other symptoms-the facial numbness was much worse, and stiil is, my eye feels frozen, tingling across my skull, ringing in my ears, dizziness, little fingers numb and feet starting feel like I'm standing in water. I've got a really good GP and she referred to an infectious deiseases consultant (Lyme etc??). Loads more bloods tests later (plus he did some extra tests on my LP (I'd had that the previous day Lucky) and a chest XRay. He mentioned my ACE levels were high and wondered about sarcoidosis (I'd never heard of this).This was 3 weeks ago. Well today, a letter from Neurology and an appointment on 8 March.

So, I know I'm just guessing here, but surely they've found something if my appointment has been bought forward. Can it be MS?? most my problems are in my head (I mean neurologically speaking!). I've looked at neurosarcoid (the great immitater apparently) and I fit that - facial numbness is often the presenting symtom.

I'm not panicking, just confused and fed up. I feel so ill. My poor family have had enough I feel, so I keep it to myself. But my husband knows how bad I feel. If it is neurosarcoid - why on earth was it not picked up 3 years ago - fed up fedup fedup!!!!

 

Sorry for the rant. I dont expect any answers/replies- just feel better writing it down.

Sue

I've got a funny feeling your neuro is feeling a bit stupid. A fellow medical professional effectively telling him that he wasn't thorough and didn't bother to think beyond the MRI results - enough to get most of them off their *****!

Why wouldn't they have picked it up earlier (if it is neurosarcoidosis)? Basically because they got lazy and stopped thinking "outside the box" added to the fact that neurosarcoidosis is pretty rare (about 1 in 10,000 or something?) and the infallible (yeah, right!!!) MRI said there was nothing wrong.

Could it still be MS? I guess so. I really hope that you find out in March!

Incidentally, don't be scared about having the appointment brought forward. Neuros can add patients pretty much whenever they like. If it was an emergency, you would have had the appointment already!

Let us know what happens?

Karen x

Thanks Karen, you always put things into perpective. I do feel that the neuro is only looking for MS and the MS nurse really didnt like being asked questions. Its almost like your health is of no concern to you and youre not allowed to question whats going on - really annoying. They also assume you dont know anything.

Well, I'll wait for the appointment and see what happens

 

Thanks again

 

Sue