RE: OT: Neuro Logical Matters

[Guest guest]

I went to see the neurologist today so I wanted to report back as promised,

even though the worst of my problems aren't really achalasia related.

Neurologists don't know a heck of a lot about achalasia, but he did know

about it and I was satisfied with his explanation. His answer to most of my

questions about achalasia were that it's a rare disease and there is little

known about it and not enough patients to study our disease.

I asked about nerve re-growth and Topiramate and he doesn't buy into the

theory that Topiramate re-grows nerves, and he didn't have any answers for

NCCP's or any advice for " what we could do for the sake of our nerves " or

" what we shouldn't do for our nerves sake " . He said that he doesn't have any

answers for nerve re-growth and doesn't think there are any.

I'm sorry notan and , but I didn't get to the biofeedback questions. I

had to tell him in 10 words or less what I was there for, so I had to pick

and choose my words carefully!!!

My 10 words were: 1) Achalasia 2) Degenerative Disk Disease (that was 3

words) 3) Pulsatile Tinnitus 4) Multiple Sclerosis 5) Hypertension 6) and

Neuropathy

We discussed these problems and he did an exam. He doesn't think I have

neuropathy because I don't have any weakness except in my right leg.

He was ready to send me on my merry way until I started tossing around

thoughts about deficiencies, glutathione and ROS (which he nodded his head

yes to and said these ideas were in the experimental stages and left it at

that). I didn't get a chance to speak too much, but then I said the magic

words, Restless Leg Syndrome, and I mentioned that a lot of people in our

group seem to suffer from this, and all of a sudden, he said RLS was

hereditary and he wants me to have a brain MRI and an MRI of my spine. He's

also checking for iron and B-12 deficiencies.

Everything that is wrong with me is complicated and he probably won't have

any answers for me. The way he does business, is to be able to help people,

and if he can't help me, he sees no reason for me to come back. He does

however want to check for MS and see if he can find an answer to my

Pulsatile Tinnitus, and he wants to do a thorough MRI of my spine to see if

surgery would be a viable option for me. I need these answers, if for no

other reason than for my peace of mind, so I'm happy that I'll be having the

tests. It'll take about a month before I have any answers.

Have a good night! (or a nice day...which ever applies)! :-)

Sandi

[Guest guest]

Hi Sandi

Thanks for the update. Maybe you will get some answers in the next

month. You really didn't say whether you liked him or not - I get

the impression that you were indifferent. Did he specify that you

had to tell him in ten words or less?

I'll keep you in my thoughts and prayers!

Hugs

PS - Maybe he will tell you that it is all in your head - WINK WINK

WINK!!!! I think that they actually have a class on this in med

school - " Great Answers For When You Have No Idea 101 "

[Guest guest]

Hi Sandi,

I think you are just way too intelligent and the neurologist was scared

that you knew more than he did :-)

Seriously, I sure hope you get some answers very soon. My husband has

tinnitus, and he drives me crazy with the remote on the TV. I thought they

had a definitive test for MS? Before my Mom was diagnosed with Shy Drager

Syndrome, they were able to rule out MS and ALS right away. Also, I'm a

little puzzled what the surgery would be? Surgery on your spine in attempt

to relieve the weakness in your right leg? I don't have restless leg

syndrome, but I know it has been mentioned by other members of our group.

I'm glad you are having the MRI's.

Good luck,

.

RE: OT: Neuro Logical Matters

> I went to see the neurologist today so I wanted to report back as

promised,

> even though the worst of my problems aren't really achalasia related.

>

> Neurologists don't know a heck of a lot about achalasia, but he did know

> about it and I was satisfied with his explanation. His answer to most of

my

> questions about achalasia were that it's a rare disease and there is

little

> known about it and not enough patients to study our disease.

>

> I asked about nerve re-growth and Topiramate and he doesn't buy into the

> theory that Topiramate re-grows nerves, and he didn't have any answers for

> NCCP's or any advice for " what we could do for the sake of our nerves " or

> " what we shouldn't do for our nerves sake " . He said that he doesn't have

any

> answers for nerve re-growth and doesn't think there are any.

>

> I'm sorry notan and , but I didn't get to the biofeedback questions.

I

> had to tell him in 10 words or less what I was there for, so I had to pick

> and choose my words carefully!!!

>

> My 10 words were: 1) Achalasia 2) Degenerative Disk Disease (that was 3

> words) 3) Pulsatile Tinnitus 4) Multiple Sclerosis 5) Hypertension 6) and

> Neuropathy

>

> We discussed these problems and he did an exam. He doesn't think I have

> neuropathy because I don't have any weakness except in my right leg.

>

> He was ready to send me on my merry way until I started tossing around

> thoughts about deficiencies, glutathione and ROS (which he nodded his head

> yes to and said these ideas were in the experimental stages and left it at

> that). I didn't get a chance to speak too much, but then I said the magic

> words, Restless Leg Syndrome, and I mentioned that a lot of people in our

> group seem to suffer from this, and all of a sudden, he said RLS was

> hereditary and he wants me to have a brain MRI and an MRI of my spine.

He's

> also checking for iron and B-12 deficiencies.

>

> Everything that is wrong with me is complicated and he probably won't have

> any answers for me. The way he does business, is to be able to help

people,

> and if he can't help me, he sees no reason for me to come back. He does

> however want to check for MS and see if he can find an answer to my

> Pulsatile Tinnitus, and he wants to do a thorough MRI of my spine to see

if

> surgery would be a viable option for me. I need these answers, if for no

> other reason than for my peace of mind, so I'm happy that I'll be having

the

> tests. It'll take about a month before I have any answers.

> Have a good night! (or a nice day...which ever applies)! :-)

> Sandi

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks ,

My head is inflating as I write this! LOL (Maybe

I’ll actually do well on my test this morning) ;-)

The brain MRI is to rule out MS

(hopefully) and to try and find an answer for the Pulsatile

Tinnitus.

I have Degenerative Disk Disease which

causes pain in my leg. I think I may have RLS on top of that, but it’s

difficult to tell anymore what is what. The two problems both share the

characteristics of making ones legs feel restless at night. My symptoms have me

bolting out of bed at night in pain, and walking about the house at night will

usually relieve the pain…and I’m really tired…I don’t ever

get a good nights sleep anymore.

Surgery would be on my lower back, and I

would only agree to having back surgery if and only if

I was to be given a decent prognosis of finding some relief from having

surgery. If the surgery was successful, it would relieve the pain in my leg. My

neighbor just had surgery for his DDD a few months ago after months of being in

pain and agony and he is doing wonderfully now.

I had mentioned that my sister also has MS

and RLS and that achalasia and MS share the same

HLADQW1 allele, and so does RLS, and when I mentioned that many of my group

members also suffered from RLS, I think it must have sparked something, because

he immediately took on a different tone.

Thanks for nice response.

Sandi

Re: OT: Neuro

Logical Matters

Hi Sandi,

I think you are just way too

intelligent and the neurologist was scared

that you knew more than he did :-)

Seriously, I sure hope you get some answers very

soon. My husband has

tinnitus, and he drives me crazy with the remote

on the TV. I thought they

had a definitive test for MS? Before my Mom

was diagnosed with Shy Drager

Syndrome, they were able to rule out MS and ALS

right away. Also, I'm a

little puzzled what the surgery would

be? Surgery on your spine in attempt

to relieve the weakness in your right leg? I

don't have restless leg

syndrome, but I know it has been mentioned by

other members of our group.

I'm glad you are having the MRI's.

Good luck,

.

RE: OT: Neuro Logical Matters

> I went to see the neurologist today so I

wanted to report back as

promised,

> even though the worst of my problems aren't

really achalasia related.

>

> Neurologists don't know a heck of a lot about

achalasia, but he did know

> about it and I was satisfied with his

explanation. His answer to most of

my

> questions about achalasia were that it's a

rare disease and there is

little

> known about it and not enough patients to

study our disease.

>

> I asked about nerve re-growth and Topiramate

and he doesn't buy into the

> theory that Topiramate re-grows nerves, and

he didn't have any answers for

> NCCP's or any advice for " what we could

do for the sake of our nerves " or

> " what we shouldn't do for our nerves

sake " . He said that he doesn't have

any

> answers for nerve re-growth and doesn't think

there are any.

>

> I'm sorry notan and , but I didn't get

to the biofeedback questions.

I

> had to tell him in 10 words or less what I

was there for, so I had to pick

> and choose my words carefully!!!

>

> My 10 words were: 1) Achalasia 2)

Degenerative Disk Disease (that was 3

> words) 3) Pulsatile Tinnitus 4) Multiple

Sclerosis 5) Hypertension 6) and

> Neuropathy

>

> We discussed these problems and he did an

exam. He doesn't think I have

> neuropathy because I don't have any weakness

except in my right leg.

>

> He was ready to send me on my merry way until

I started tossing around

> thoughts about deficiencies, glutathione and

ROS (which he nodded his head

> yes to and said these ideas were in the

experimental stages and left it at

> that). I didn't get a chance to speak too

much, but then I said the magic

> words, Restless Leg Syndrome, and I mentioned

that a lot of people in our

> group seem to suffer from this, and all of a

sudden, he said RLS was

> hereditary and he wants me to have a brain

MRI and an MRI of my spine.

He's

> also checking for iron and B-12 deficiencies.

>

> Everything that is wrong with me is

complicated and he probably won't have

> any answers for me. The way he does business,

is to be able to help

people,

> and if he can't help me, he sees no reason

for me to come back. He does

> however want to check for MS and see if he

can find an answer to my

> Pulsatile Tinnitus, and he wants to do a

thorough MRI of my spine to see

if

> surgery would be a viable option for me. I

need these answers, if for no

> other reason than for my peace of mind, so

I'm happy that I'll be having

the

> tests. It'll take about a month before I have

any answers.

> Have a good night! (or a nice day...which

ever applies)! :-)

> Sandi

>

>

>

>

>

>

>

>

>

[Guest guest]

wrote:

PS - Maybe he will tell you that it is all in your head - WINK

WINK WINK!!!!

Hahaha! Thanks ...I needed the laugh!!!!:-)

Sorry I'm just now answering your message, I was looking at the

messages at school at the group home page and I found it. It never

got to me in my inbox at home.

In answer to your question, I liked the neurologist well enough. I

think he's probably the type who won't have much to say until he

does his research and gets all the facts, and I respect him for

that. He was just difficult to read....and yes, he really did tell

me to explain in 10 words or less, but I think that got the ball

rolling in the right direction. It will be about 3 weeks after I

have the MRIs before he contacts me.

Thanks so much for your concern and for you thoughts and prayers. It

means a lot to me.

I hope that You, Chet and the kids are having a wonderful spring

break! I have one of my boys turning 15 tomorrow! He's getting a

bedroom makeover!

Hugs to All,

Sandi