Just had a visit with my neurologist. Here's the new stuff I wanted to chat with him about.
1. My head started having tremors
2. Numbness/pain in tips of big toes...sometimes my entire left foot goes numb.
3. Ice pick pain in front and on top of right side of head into my brain.
So he looks at my records then has me do the normal neuro in office testing(following my finger, walk heel to toe, you know the routine). He wants to look at my feet, of course and I remind him I also have Reynaulds syndrome.
Eventually he says, something beside gluten ataxia may be going on here. Will you let me do an MRI of your brain? I've done several brain MRI before, so "sure". He and my husband have this long conversation about what else might be wrong with me...I didn't understand most of it, except to say, something else is may be wrong...great.
So friends, any thoughts?
Good Morning Julie!
This is probably not useful but you never know.
I had 2 Esply Manouvres for BPPV, to try and move the crystals. Each time, the day after, I had a 'shooting
nerve pain' through my head. I know that it's said these manouvres will work if you persevere, but the pains
scared me and I wouldn't let them do it again.
Sometimes I regret this decision, lets face it, BPPV is something you can do without on top of ataxia.
I do have BPPV, but this seems to be unrelated.
I begged my husband to help me do the maneuver to fix the BPPV because I was so desperate. It worked! and the doctor said that he can do it at his office too, but no reason my husband can't help me with it.
Thanks for the thought!
Thank you for your prayers Doodle Bug! :-)
Hi Julie, What is BPPV and what maneuver does one do to fix it? In terms of what your neurologist said, you've obviously faced many challenges with your health, and managed to deal with them. I agree with Doodle Bug, although difficult, try not to worry! If it's any consolation, I saw a new neurologist in January (the one I had previously seen since diagnosis, 10 years ago, retired in November). He suggested two additional tests that I hadn't previously had, as my ataxia is sporadic/idiopathic (unknown cause). Both tests were negative...yay! Hopefully, all will go well for you also! I'll be thinking about you..., ;o)
you have been through so much and sound so courageous! Good that you are open to feedback.
I have the big toe thing occasionally that seems to be diet related.
May I suggest daily Iyyengar or resorative yoga? i do it for twenty minutes each day and it keeps my spine flexible. Also breathing exercises ansany exercise that opens up your spine and vertebrae such as the Alexander technique.
Also, I recommend meditation via the book by Roy Masters called "How Your Mind Can Keep You well". It is the easiest and most effective meditation I have ever done and works immediately for me, no matter wha the challenge, Physical, mental, or spiritual. Also journaling is a terrific way to release the emotional buildup from pain, fear, and anxiety.
Hope this helps/ You are in my prayers.