Okay... promise you won't yell... :o)

[Guest guest]

Okay all... promise you won't yell...

I can't even remember if I posted this yet, and am too tired to look

back and see, but just in case I didn't, please don't ride me too

hard about this... after all... I'll likely be home before I can

read this (but... I might get on and check in the morning before we

leave for the airport).

Anyway, I had some very odd occurences when I flew here.

I had my usually " numb skull " episodes - where my skull - one half -

goes numb. But what followed was particularly disconcerting.

When I arrived in St. Louis, I was jerking spasmotically. Seemed any

time I tried to move, it resulted in a jerk. Yet, seemed I was also

jerking without trying to move - but who knows? Maybe I WAS moving -

even if only slightly.

In any case, though I've felt and seen slight uncontrolled muscle

movements, they were nothing like this. This had me shaking my head

(no pun intended :-) in disbelief.

The movements were not as bad in Atlanta's airport. I considered

that a blessing, as my parents met me here.

However, the movements have continued this week. The seminar was

cold - to me anyway. Seemed any time I got cold, the movements were

worse.

But, true to form, it wasn't that predictable. Because Friday

morning I was warm, but having trouble. Then later, when cold, I

wasn't. Then, after that, I was again.

I also noticed that anxiety seemed to play a part (as I had far more

trouble controlling my muscle movements when talking about plans to

quit working - a profession I've literally spent half my life in

pursuit of). I'm wondering if it's just any stress placed on my body?

I'm also wondering if this is a " new chapter " ? Or... if something

happened on that flight. A bit late to ask now... huh? :-) I

mean, this was exponentially worse than anything I've experienced to

this point (muscle movement-wise). Today, has been a good day with

regard to that, but... tomorrow I fly out. The good news is... it's

warmed up back home - back up in the 90s for highs. That's about as

good as Florida :-)

Oh well. Always open to (gentle) input.

Thanks,

Pablito

[Guest guest]

Greetings again, Pablito !

Okay, let me cut to the chase and suggest this might be related to the

cerebellum. Request your doctor check you for this. However, remember the

neopolitan icecream analogy ? You may have experienced minimal problems

with coordination in the past, but it may well start with time.

Why do I suggest you may have this? Two reasons. These new symptoms are

quite similar to mine. Numbness on one side of the skull. Jerky motions.

You will get accustomed to it, though you might require some medication for

the tingling sensation. Second, you mentioned that anxiety seems to play a

role in this.

As my neuro-ophthlomologist indicated (many moon ago, now), when anyone

faces a stressful situation, their body starts to release certain

hormones/chemicals that cause some level of shaking even in the healthy.

This is why someone shakes with fear. This is why someone will act drunk

shortly after a very stressful situation. BUT, if someone with cerebellar

damage faces the same situation, they will have greatly increased problems.

I've experienced it all to often. That's why a crowded restuarant or church

can magnify my symptoms. I am not an extrovert, so that type of situation

only stresses me. So, we try to goto restuarants off hours. And I sit

toward the back of church so I can escape to our 'narthex' (gathering

space), where I can still hear our pastor, but not be overwhelmed with all

the people and commotion about me.

So, yes, this is a reasonable new symptom. Be certain to discuss it with

your neurologist. Hope this helps.

Regards,

=jbf=

B. Fisher

[Guest guest]

Hi .

I am an extrovert, so it is a problem for me. :-)

Anyway, thanks for the comments. Valued as always.

I was quite curious, as it seems any stress - emotional or physical

seems to be bringing new " gems " to the surface.

I've copied your post and will deliver to my internist. I don't have

a neurologist. My neuro from Tulsa has not expressed a desire to see

me again since he is not familiar with what is going on - and I

haven't had a response from my neuro at Mayo in quite some time

(except a brief phone message telling me not to pursue one avenue).

We are considering going to Dr. on.

Curious, have you been diagnosed with MSA? I have not. Just

autonomic neuropathy. Of course, when doc at Mayo saw me,

uncontrolled muscle movements were not such a significant issue.

And, even now, they seem to have died back down.

I wasn't concerned with Dx, but now that I am facing applying for

disability, it seems a more firm diagnosis might be beneficial.

(I've been as reluctant to pursue " disability " as I have been to use

a cane, but the point has come that we can no longer live off my

ability to generate an income - making basically 1/6 - at best - of

what I was a year ago.)

Catcha later.

Pablito

> Greetings again, Pablito !

>

> Okay, let me cut to the chase and suggest this might be related to

the

> cerebellum. Request your doctor check you for this. However,

remember the

> neopolitan icecream analogy ? You may have experienced minimal

problems

> with coordination in the past, but it may well start with time.

>

> Why do I suggest you may have this? Two reasons. These new

symptoms are

> quite similar to mine. Numbness on one side of the skull. Jerky

motions.

> You will get accustomed to it, though you might require some

medication for

> the tingling sensation. Second, you mentioned that anxiety seems

to play a

> role in this.

>

> As my neuro-ophthlomologist indicated (many moon ago, now), when

anyone

> faces a stressful situation, their body starts to release certain

> hormones/chemicals that cause some level of shaking even in the

healthy.

> This is why someone shakes with fear. This is why someone will act

drunk

> shortly after a very stressful situation. BUT, if someone with

cerebellar

> damage faces the same situation, they will have greatly increased

problems.

> I've experienced it all to often. That's why a crowded restuarant

or church

> can magnify my symptoms. I am not an extrovert, so that type of

situation

> only stresses me. So, we try to goto restuarants off hours. And I

sit

> toward the back of church so I can escape to our 'narthex'

(gathering

> space), where I can still hear our pastor, but not be overwhelmed

with all

> the people and commotion about me.

>

> So, yes, this is a reasonable new symptom. Be certain to discuss

it with

> your neurologist. Hope this helps.

>

>

> Regards,

> =jbf=

>

> B. Fisher

[Guest guest]

,

The diagnoses is not as important as the symptoms for Social Security

Disability Retirement (SSDI). Your doctor will need to certify that you

are too disabled to do your normal job and that it will not get better

(it's permanent). Note that you do not have to be completely disabled -

only disabled to the point that you can not do the job you were trained

for and the reasons you can not do it. They can offer you training in

another job, but it is rare (I have not heard of them doing that but

they may ask your doctor). They will also need to recertify that you

are still disabled every 2-3 years as long as you get SSDI. Things like

gait disorder, ataxia and dysautonmia are more important than calling it

MSA or something else (which the SSDI people do not know anyway).

Since you can not get Medicare until two years after you get SSDI, it

may be well to apply now especially if things are moving faster. I

would definitely ask by the time you are falling often. Ask your doctor

about disability and they will probably know what the criteria are for

getting it.

Note too, that almost every patient of brain disorders claims that

stress makes the symptoms worse. You are not alone there.

Take care, Bill Werre

==============================================================

pulalupu wrote:

>Hi .

>

>I am an extrovert, so it is a problem for me. :-)

>

>Anyway, thanks for the comments. Valued as always.

>

>I was quite curious, as it seems any stress - emotional or physical

>seems to be bringing new " gems " to the surface.

>

>I've copied your post and will deliver to my internist. I don't have

>a neurologist. My neuro from Tulsa has not expressed a desire to see

>me again since he is not familiar with what is going on - and I

>haven't had a response from my neuro at Mayo in quite some time

>(except a brief phone message telling me not to pursue one avenue).

>

>We are considering going to Dr. on.

>

>Curious, have you been diagnosed with MSA? I have not. Just

>autonomic neuropathy. Of course, when doc at Mayo saw me,

>uncontrolled muscle movements were not such a significant issue.

>And, even now, they seem to have died back down.

>

>I wasn't concerned with Dx, but now that I am facing applying for

>disability, it seems a more firm diagnosis might be beneficial.

>(I've been as reluctant to pursue " disability " as I have been to use

>a cane, but the point has come that we can no longer live off my

>ability to generate an income - making basically 1/6 - at best - of

>what I was a year ago.)

>

>Catcha later.

>

>Pablito

>

[Guest guest]

Greetings again, Pablito !

You mentioned:

> I wasn't concerned with Dx, but now that I am facing applying for

> disability, it seems a more firm diagnosis might be beneficial.

Actually, a definite diagnosis is not alway possible. However, as I

understand from my neurologist, your doctor only needs to shows you

currently have a degnerative disorder, which will not improve, and it

severely limits your ability to function in your job. But, yes. For you

and your family, it may well be better to have a definite diagnosis. Seeing

Dr. on may well be in order.

> (I've been as reluctant to pursue " disability " as I have been to use

> a cane, but the point has come that we can no longer live off my

> ability to generate an income - making basically 1/6 - at best - of

> what I was a year ago.)

I am not certain why poor ability to move about would decrease your salary.

Are there other factors? If the problem is just mobility, those can be

solved. Pardon my curiosity, but as someone dealing with this I learned a

new motto: " Accept, Adjust and Adapt!

Regards,

=jbf=

B. Fisher

[Guest guest]

If you go on the SS website and look at their information on

disabilities, you will see that they have some pre-qualified categories

of disability that essentially expedite your application.

Neurodegenerative conditions are listed there. My brother's application

was approved in less than 2 months. Of course, you have a six month

wait after approval.

Jerry Cash

Re: Okay... promise you won't yell... )

Greetings again, Pablito !

You mentioned:

> I wasn't concerned with Dx, but now that I am facing applying for

> disability, it seems a more firm diagnosis might be beneficial.

Actually, a definite diagnosis is not alway possible. However, as I

understand from my neurologist, your doctor only needs to shows you

currently have a degnerative disorder, which will not improve, and it

severely limits your ability to function in your job. But, yes. For

you

and your family, it may well be better to have a definite diagnosis.

Seeing

Dr. on may well be in order.

> (I've been as reluctant to pursue " disability " as I have been to use

> a cane, but the point has come that we can no longer live off my

> ability to generate an income - making basically 1/6 - at best - of

> what I was a year ago.)

I am not certain why poor ability to move about would decrease your

salary.

Are there other factors? If the problem is just mobility, those can be

solved. Pardon my curiosity, but as someone dealing with this I learned

a

new motto: " Accept, Adjust and Adapt!

Regards,

=jbf=

B. Fisher

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[Guest guest]

I want to second what Bill just told you. If you are having symptoms now, try to get your SSDI NOW> IT WILL TAKE TWO YEARS TO GET MEDICARE. When you make your initial appointment, have the following:

A copy of your complete medical records.

A statement from the doctor saying that in their opinion, you are disabled.

A list of your symptoms.

A list of your medications.

Anything else, letters from employers, caregivers, etc stating what your condition was and how it is now.

Armed withthis information, I was able to get my SSDI started in three (3) months. Believe me when I say they (Social Security) told me that was a record.

Hope this helps.

Dr. Ray

-- Re: Okay... promise you won't yell... )

,The diagnoses is not as important as the symptoms for Social Security Disability Retirement (SSDI). Your doctor will need to certify that you are too disabled to do your normal job and that it will not get better (it's permanent). Note that you do not have to be completely disabled - only disabled to the point that you can not do the job you were trained for and the reasons you can not do it. They can offer you training in another job, but it is rare (I have not heard of them doing that but they may ask your doctor). They will also need to recertify that you are still disabled every 2-3 years as long as you get SSDI. Things like gait disorder, ataxia and dysautonmia are more important than calling it MSA or something else (which the SSDI people do not know anyway).Since you can not get Medicare until two years after you get SSDI, it may be well to apply now especially if things are moving faster. I would definitely ask by the time you are falling often. Ask your doctor about disability and they will probably know what the criteria are for getting it.Note too, that almost every patient of brain disorders claims that stress makes the symptoms worse. You are not alone there.Take care, Bill Werre==============================================================pulalupu wrote:>Hi .>>I am an extrovert, so it is a problem for me. :-)>>Anyway, thanks for the comments. Valued as always.>>I was quite curious, as it seems any stress - emotional or physical >seems to be bringing new "gems" to the surface.>>I've copied your post and will deliver to my internist. I don't have >a neurologist. My neuro from Tulsa has not expressed a desire to see >me again since he is not familiar with what is going on - and I >haven't had a response from my neuro at Mayo in quite some time >(except a brief phone message telling me not to pursue one avenue).>>We are considering going to Dr. on.>>Curious, have you been diagnosed with MSA? I have not. Just >autonomic neuropathy. Of course, when doc at Mayo saw me, >uncontrolled muscle movements were not such a significant issue. >And, even now, they seem to have died back down.>>I wasn't concerned with Dx, but now that I am facing applying for >disability, it seems a more firm diagnosis might be beneficial. >(I've been as reluctant to pursue "disability" as I have been to use >a cane, but the point has come that we can no longer live off my >ability to generate an income - making basically 1/6 - at best - of >what I was a year ago.)>>Catcha later.>>Pablito>If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe