NF2 and lower extremity issues

[tony]

I understand your situation and some thoughts for you :
let me say again- it is not absolutely clear that it is an NF2 cause (in your case, possible
but not definately) You cannot easily/accurately diagnose from 3,000 miles away ?
The spine showed nothing ? but did your last MRI have the gallium (?) enhancement
- If they injected something into you just before/during the MRI - then yes it did
- no injection, then I dont think so (this injection improves the contrast of the scan)
Who checked the MRI scan - again, an NF2 specialist ?
My original MRI review missed a 3.0cms tumour - it took a second check to spot it
and yes, it is very hard to see.  I mentioned before the "full - body - check" Have you had one ? - if not maybe time to dig out a special NF2 type clinic - they would do one
I am sure your Doc is a great guy - but NF2 is so rare - you are maybe only no 2 or 3 NF2 patients he has treated (again the special clinic has met 50-100)
In terms of damaged balance - a wonky balance may put different strains and stresses on legs
giving the sensation of pain or fatigue- but over time I would expect the body to adjust
regular exercise will improve it over time (yuck for a few days - but gets better ?)
Brain fatigue is definately a feature of damaged balance The whole system is working so much harder - I used to need to sleep mid-day
- but extra exercise over time has almost completely eliminated this
(along with proper rest breaks)
The process can take 6-12mths, 2-3 hrs per day
but it is worth it - the quality of life is so much better
Good luck and best regards
Tony

[Dealy]

Cynthia- I will give you alittle BG on my neuropathy and see if this can relate too you or not. Before I received radiation (FSR) 3 years ago-my right toe was always numb. A week after radiation my whole foot goes numb on both feet. I associated that with my radiation but was told no by Doctor's at Johns Hopkins. So I got into the web and did research myself. I found a study of 10 people with NF2 that had different levels of Peripheral Neuropathy to the lower extremities Some too the hands-feet-torso- etc. not always associated with tumors on the spine though. I did not retain or can remember the  site where this was at. Then I had a nerve conduction test and was told my nerves do not fire like they used too-my current Neuro who does work with NF2 patients is the one who told me yes-this numbness of the feet is caused by NF2. I did have a full body scan 2 years ago with contrast and it showed no spinal tumors. I asked my current Neuro if I should have another scan-and he told me NO-if you can function-why bother. So I guess I can function but of course my feet are still numb. I also notice that when I consume too much sugar I mimic the exact symptoms of a diabetic but yet my blood work never shows high glucose levels. Wierd. I really cannot afford too check out with an actual NF2 center so I for myself will muddle along with my symptoms. I do work a strenous 40 hour job-which gives me alot of exercise-I still tire easy though after 3 years post radiation-by the end of the week I am just exhausted. Used too have more energy. Hope this helps you some.

[cynthiaweisbord]

Hi Tony,
Thanks for all the suggestions. In fact I do see an NF2 specialist at Mass General Hospital.  I can't say for sure if he did the full body check you referred to. I can only assume he did when I first went to him.  However I did have a full body MRI which he checked and reported no tumors (done last April).  I think it was with contrast, will check on that tomorrow. He's had no response to the heavy tired leg problem,  indicates to me that he never heard of it.  I wanted to see him about all the symptoms I'm having ( dizziness, heavy legs, buttocks and base of the spine, extreme fatigue, poor balance and more.  I was told he wouldn't see me before my next annual exam (December).  I've been given some exercises to do, but would like to know what your exercise story is.  Do you exercise 2-3 hours every day?  Who gave you the exercise regimen?  Are you still doing it? For how long each day?
I feel up a creek, as though no one is in charge of this horrible condition, the NF2 guy can't be bothered.  Don't know where to turn.  Hence I'm turning to you.  Am enormously appreciative of your sharing with me.
                                                         Cynthia

[cynthiaweisbord]

Hi Dealy,
Thanks for your response.  I considered neuropathy as an explanation, but no neurologist I've seen has suggested it and I don't have  numbness, but heaviness and extreme tiredness in the legs, heaviness in my buttocks and the base of the spine in my head.  One doc did say that these sensations do have to do with the NF2;  I think they're connected to the pathology in the vestibular system and the propriocentric function.  What have you found to help with the problems you have with your limbs?
                                    Thanks so much for your time and suggestions.
                                     Cynthia

[tony]

In terms of exercise
- it is usually best to go with something you actually like doing
lets say as a child you liked ballet, gym, dance etc etc
anthing that involves movement, balance, control
You can make your own one up
- based on your favourite activities ?
Basically create a space at home - for a safe landing if you fall
(dont take risks here - falls are common early on )
start small, one hour per day, and work up
Early days the harder you push the balance system
the more tired you will become (you will need to rest)
- but more importantly the better your long term strength/balance will become
For me it was Golf - initally an hour, working up to four, then six hours (in a day)
Two years down the path - I can work an 18 hr day and can
play a full 18 hole course (3-4miles walk)
(The stateside NF2 survivor - Becks, can now walk 31Ks
or run a half marathon- it can be done)
Check out my earlier posts for the cure/suppression suggestions
Final thoughts, NF2s get ANs (usually both sides)
On the spinal column - next most likely
but also elsewhere (rarely but it can happen)
The full body check is quite physical
involving strength and sensation checks by a doc/nurse
on your whole body/ hands /arms /legs /feet
- its not something I would forget having ?
Best Regards
Tony

[cynthiaweisbord]

Tony
     Thanks for your suggestion about exercise.  I just got back from a yoga class and actually feel better than I did before the class.  In fact I was feeling so horrible that I had to lie down and rest after doing any thing for more than 10 minutes and even questioned whether I could make it through the class.  I guess exercise is at least part of the answer to my problem.  Appreciate your  knowledge and sharing.
                                                            Cynthia
  Thanks to you too again Ron.

[nftwoed]

Hi;
  The original post to this topic is old but I wish to pick up here at "neuropathy".
  I was Dx'd with 'Autonomic Neuropathy' as many systems from heart to stomach are now affected: Stomach  ( slow gastric emptying ) to bladder ( bladder neck neuropathy ) to bowels ( outer spincter neuropathy ) to legs ( calves esp. ), feet, toes, and essential tremor. These things may be a byproduct of neuropathy of the Vagus Nerve which runs the full length of the body to at least the torso.


   

   Hi;
   Was thinking a type of peripheral neuropathy combined with general unsteadiness associated with vestibular issues. That's what I was told by a Neurologist re, the lower leg "heaviness" I feel also.

   In reading, about half the cases of those with NF-2, have a neuropathy or poly neuropathy ( several areas ).

   I suppose nerve conduction velocity tests could be performed, but it doesn't seem likely even if abnormal, the person could be helped.

   Of concern to me would be a developing hydrocephalic condition if mental status would become sluggish or altered in some way.