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Old 10-29-2007, 03:27 PM   #1
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lynxgal HB User
Tomorrow's Neuro Appt.

Hi Everyone,

I am almost ready for tomorrow's appointment with the Neurologist. I have been going over some past things in my mind and I am thinking about compiling (sp) a separate list of these things....

1. Have been suffering bouts of weird dizziness with no apparent cause on and off for years. (current GP has notes of 3 separate episodes of what he thought was labs over the last 5 years)

2. I have not been able to open jars etc. that even my ds closes for about 5 years.

3. Review of old medical records shows my PNP was only effecting my great toe and now I have patchy feeling in the lower leg as well.....not sure if this is possible over the years but maybe I should question it with the neuro while I have the chance.

What do u think?
__________________
~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
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Old 10-29-2007, 05:08 PM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Tomorrow's Neuro Appt.

Hi Lynxgal.
wanted to wish you good luck tomorrow. Your list is a good start, but dont forget to add things like:
Are you suffering from heat exhaustion, or does the hot showers make you dizzy? Do you have any vertigo or eye pain? Ringing in the ears? Do you have any tingling anywhere else besides your toe? When you say you cant open jars, is this loss of strength or is it more of a numbness? These are things to think about...
If this is a good neuro, he will probably make you do some balance tests (walking toe to heel) and some reaction type tests (touch your nose, touch his finger, touch your nose, touch his finger). Youll be in for some poking and prodding, and mostly alot of questions...if you are taking any meds at all, any supplements or vitamins, bring a list with dosages!
Good luck and let us know how it goes..
Hugs,
Nikki
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Old 10-29-2007, 05:37 PM   #3
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lynxgal HB User
Re: Tomorrow's Neuro Appt.

Thanks Nikki,

I will have my diary to refer to and I have a summary of the symptom list and time line from the last 7 months ready to go as well as what my GP has tried and didn't work.

Question....does the hot showers ALWAYS cause fatigue....or just sometimes? The reason I ask is because when this whole thing started with the severe vertigo...sometimes after I would shower in the am (have always loved my showers the hotter the better) I would fell exhausted and crawl back into bed. I would HAVE to lie down....but that only happend a handful of times....not all the time.

Oh I did post my story awhile back if you wanted to read it.
__________________
~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

Last edited by lynxgal; 10-29-2007 at 05:38 PM. Reason: added something

 
Old 10-29-2007, 07:11 PM   #4
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Re: Tomorrow's Neuro Appt.

Hi Lynxgal,
I think, like everything else with this stupid disease, that its different for each person, and can even be possible to be different at different times.
I know that doesnt really help you, but like you, I used to LOVE hot showers...about 6 months before my dx, I started getting terribly dizzy and tired when I got out...by the time I attempted to use the blow dryer on my hair, I was nearly in tears! My husband thought I was cracking up! We had no idea about MS, or that this was a symptom. It wasnt until I had more symptoms, wound up seeing a Neuro, and his nurse was taking a history, asking questions, when this came up...and I was like "yeah, yeah, that is VERY familiar!"...

A year later, I find that sometimes, I can handle hot showers...especially when it is cold out, or when Ive got the air conditioining blasting...other times, my body resorts back to shutting down. I have also learned that if I start out with hot water, and gradually cool it down to tepid before getting out, I tolerate it much better...

So, I dont think there is a definate answer to your question. Unfortunatly with this disease, nothing ever stays the same for long..things constantly shift and change...and no two cases are exactly alike, so its really tough to give you an answer.

I did go back and read your story, and its interesting. Dont be offended when I say that everyones story is almost the same, and yet so different that its mind boggling. Youre seeing a Neuro, which is the right place to go from here...be brave, be open minded and remember that its a terribly hard thing to dx and you MIGHT not walk out with all the answers...the most important thing for you to do is connect with this doctor, hopefully he will listen and you will respect him. Dont overwhelm him with too much info, you certainly dnt want him thinking that you have EVERYTHING wrong with you...instead you want to concentrate on the most recent, relevent and troubling issues and let him take it from there...hopefully he will order more tests or at least give you an honest opinion. He might not want to do anything for 6 months; what is really important is once you see him, youll have a place to come back to should you have new or reoccuring symtoms...and be given comfort that this is manageable...the symtoms, are treatable, even if the disease isnt.

Wishing you all the best, please post after your appt and let us know how it went. Ill be thinking of you..
Hugs,
N
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