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Back form neuro appt...

Hi everyone.

I have just come home form my neuro appt..  not as bad as i thought, (as I thought I'd get another fob off). Although I didn't get a dx, I feel like I am a bit further on...

 

Basically he told me I have spastic paraparesis but he doesn't know the cause, he said that there are two main things is could be; MS or HSP!! (Hereditry Spastic Paraparesis)  But for MS, he said because all my scans, LP and VEP are all clear then he can't really move forward with that. He said if my scans were clear he probably could of dx'd MS based on other things, but with a clear LP, its far too rare for it to be MS??  (having both MRI and LP clear)  He asked if anyone in my family has similar problems.  My daughter has been having very similar symptoms to me for the last year or so.  I told me him this, he said that was interesting!  And is testing for some enzyme??  Something to do with the hereditry part of HSP
 
He also told me I am quite complex, he knows I have a nervous system problem which spans from my spinal chord, but because the tests always come back clear, he is basically stumped!  Well, he said its either MS, HSP (if they find medical proof!) or it may be left as idiopathic and we may never find a cause!!  
 
Also, he said there is more than one thing going on, which makes me more complex!  For example, he said he thinks my original dx of CFS/ME (2008) is still valid and would answer some of my problems, and he said I also have Chronic migraine which would answer some other problems, (mainly vision)  But neither of them would cause SP.. therefore the other thing I have is either MS or HSP??
 
He said he's tested me for everything else, (vitamin deficiency, something to do with white blood cells.. and lots of others, but everything is fine!! So that basically excludes everything else)
 
How confusing!!  Although I do actually feel I have made some progress..  I sort of have a name.. I can now say 'I either have MS or HSP my neuro isn't sure which'.   
 
Jules xx

Wow Jules

this is great progress. Your neuro believes you and has narrowed it down to two possible issues which is fantastic. None of these issues are life threatening either which is an even bigger plus.

The neuro is quiet right in that a normal MRI and normal LP is rare with MS but not completely unheard of which is obviously why he hasn't thrown MS out of the equation.

I guess time will provide the answers eventually and although your still in limbo land and least you know the possibilities so maybe there's some light at the end  of the tunnel.

Glad it went well.

Reemz

X

Seems like he is really looking in to it which is good.  If it turns out it is ME a friend of mine who has it, swears by Aloe Vera she said it makes the biggest difference.

Thanks Reemz, My next appt is in 9 months as he wants to monitor me. There does seem to be a glint of light!

Thanks Sue. I got the ME diagnosis in 2008, but never believed it. Just didn’t quite fit! Although my neuro thinks the ME dx is right PLUS I also have either MS or HSP on top of the ME! He’s told me I have lots going on and definitely not one condition!!

I’m 5 years down the line now… How much longer till I find out exactly what’s going on?? Humph

X

sorry to hear this is taking so long. Nightmare - It does sound like your consultant is being quite useful now. I don't know anything about HSP but really hope you get some answers soon.

Hi Jules

I was so interested to read your post as in many ways your problems are similar to mine.

I've had problems for over 5 years now, but tests for MS, i.e. MRI + LP have been clear. My VEP was borderline & there was dysfunction in my SSEP test.

In March this year I was diagnosed with CFS/ME by a different consultant who specialises in that. Although this explains the fatigue, I don't think it addresses the problems of pain and difficulty walking far. The pain I have is neuropathic pain, where I feel like my legs are being gripped tightly in a vice which has razor blades in. I also often feel as if I'm sitting on jagged glass.

In a morning, my legs are so stiff I can't walk without holding onto the walls & actually use my stick to get to the bathroom. My normal walking is about 10mins max before I need to rest. I also have numbness/weakness in my left ankle & foot.

My Neuro arranged another MRI scan of the lumbar spine (which I had today) to see if there are any changes. Other than that, he has no answers!

It's so frustrating isn't it?  I'm so pleased 'though that you have a partial answer and that your Neuro is following you up to monitor you.  It's great to be believed isn't it?

Do let us know how you get on & take care

Bren x

Hi Jules,

It's definitely good news because at long last you can now put some kind of name to what's going on, which if nothing else will give you some peace of mind.  

As Reemz said, although you're still in limbo, the possibilities have now been whittled down so it's 'time' which will tell which it is - MS or HSP - in the meantime keep in mind that you clearly have a great neuro who's obviously determined to get to the bottom of it too thumbsup

I think it's a big step forward!

(((hugs)))

Debbie xx