Re: Marfla

[Guest guest]

Marfla, this kind of information is what the ambassadors of each state will

be trying to set up for their resource packages. Tawny and I go to the same

neurologist who has a few PLS patients and really knows about motor neuron

muscular diseases. It took him about a year or so to dx me. He first said

ALS but after going though the elimination period it turned out to be PLS.....

........Here is his address

Dr lin

St sburg Neurology Clinic

General Adult Neurology

Fellowship Trained Neuromuscular Diseases/EMG

Board Certified - Neurology & Electrodiagnostic Medicine

1099 Fifth Avenue No

St sburg,Fl. 33709

ph-.............................His office is right next to St

's Hospital

......Flora

[Guest guest]

cool thanks for the information. I will check to see if on my insurance plan so

if need a second opinion or another specialist he would be an option.

marfla

Re: Marfla

>

>Marfla, this kind of information is what the ambassadors of each state will

>be trying to set up for their resource packages. Tawny and I go to the same

>neurologist who has a few PLS patients and really knows about motor neuron

>muscular diseases. It took him about a year or so to dx me. He first said

>ALS but after going though the elimination period it turned out to be PLS.....

>.......Here is his address

>

>

>Dr lin

>St sburg Neurology Clinic

>General Adult Neurology

>Fellowship Trained Neuromuscular Diseases/EMG

>Board Certified - Neurology & Electrodiagnostic Medicine

>1099 Fifth Avenue No

>St sburg,Fl. 33709

>ph-.............................His office is right next to St

>'s Hospital

>

>

>

>

>.....Flora

>

>

>

[Guest guest]

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him since

1996 and he knows well after that many years and sees my progression and has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches anymore

but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

thanks Flora

i agree getting outside even if just sitting is great. I went to Epcot

yesterday and getting ready to head to Magic Kingdom or Animal Kingdom in a

few minutes. having a scooter is only way I can do this but was well worth

the cost. i can go with scooter and enjoy scooting around

I still have the info on you doctor, and if Shands is a bust, or I can't

find another neuro locally with knowledge i will still consider driving over

that way. I spoke via phone with a neuro's office nearby (Longwood). he is

a DO, and was told he works with general neuro issues, but also has worked

with HSP and PLS, besides things like MS, ALS, etc... I like idea of him

being a DO too. They told me i had the right for another opinion and to get

the referral. I shared with them my current neuro is sending me to Shands

and maybe will wait to see how that appt goes. His office said even going

to Shands I still have right to request referral to as many neuro's or

doctors I felt needed to get answers. She sounded so compassionate when

discussing symptoms going on three years with no definite answers. She

stated that in itself just causes more stress. So his office may be a

possiblitiy.

I may be moving in next few months as my rent was raised way to high imo.

Looking at a place which is very very small, but so much more affordable.

and would allow me to save money. if i do move there then I will find new

primary and neuro due to location. Although I like my current neuro his

office staff imo are incompetent. Also depends on what happens at shands and

then seeing this neuro after that, if he continues treating like he has, or

what changes he makes. But I would prefer to have aneuro that also has

competent staff. No matter if i move or not, I will be getting a new

primary as Im frustrated with her.

enough sorry got off topic.

hope you are doing ok and taking care of YOU.

gentle hugs

marfla

Be Blessed

Re: Marfla

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him

since

1996 and he knows well after that many years and sees my progression and

has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like

we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches

anymore but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

Hey marsha,

i forgot to tell you that i told my doc i was referring people to him (not

just you) for whatever neuro prob they were having and he suggested that because

of the often long wait times that dr khamasani was also very competent and

knowledgeable about motor neuron diseases too and that one can get in faster to

see him. all the docs there consult with one another because none of them seem

to have that " god " complex that many docs have---esp neuros and surgeons. at

any rate i forgot to tell you that 2 weeks ago when i had my appt. just giving

you options.

so will you have to move out of orlando? where are you thinking of going? i

too don't like my primary, but then all i need her for are referrals cause i see

my neuro every 2 months and my primary doesn't know about motor neuron diseases

and i would venture to guess she doesn't know what a motor neuron does! outside

of pls, i don't need that much and if i do, i tell her what i need for

allergies, congestion, infections, etc. referrals she does well and that is all

medicaid needs. medicaid primaries are like picking a contractor out of the

yellow pages!!

hang in there with all of your stressors....keep posting cause you didn't for

a while there and you seem so much more hopeless and frustrated in your posts

now. it will happen...when is appt at shands?

tawny

Marfla marfla04@...> wrote:

thanks Flora

i agree getting outside even if just sitting is great. I went to Epcot

yesterday and getting ready to head to Magic Kingdom or Animal Kingdom in a

few minutes. having a scooter is only way I can do this but was well worth

the cost. i can go with scooter and enjoy scooting around

I still have the info on you doctor, and if Shands is a bust, or I can't

find another neuro locally with knowledge i will still consider driving over

that way. I spoke via phone with a neuro's office nearby (Longwood). he is

a DO, and was told he works with general neuro issues, but also has worked

with HSP and PLS, besides things like MS, ALS, etc... I like idea of him

being a DO too. They told me i had the right for another opinion and to get

the referral. I shared with them my current neuro is sending me to Shands

and maybe will wait to see how that appt goes. His office said even going

to Shands I still have right to request referral to as many neuro's or

doctors I felt needed to get answers. She sounded so compassionate when

discussing symptoms going on three years with no definite answers. She

stated that in itself just causes more stress. So his office may be a

possiblitiy.

I may be moving in next few months as my rent was raised way to high imo.

Looking at a place which is very very small, but so much more affordable.

and would allow me to save money. if i do move there then I will find new

primary and neuro due to location. Although I like my current neuro his

office staff imo are incompetent. Also depends on what happens at shands and

then seeing this neuro after that, if he continues treating like he has, or

what changes he makes. But I would prefer to have aneuro that also has

competent staff. No matter if i move or not, I will be getting a new

primary as Im frustrated with her.

enough sorry got off topic.

hope you are doing ok and taking care of YOU.

gentle hugs

marfla

Be Blessed

Re: Marfla

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him

since

1996 and he knows well after that many years and sees my progression and

has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like

we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches

anymore but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

thanks tawny

I don't have an appt at Shands yet. My records have been sent there. My

understanding is once they have my records, someone there reviews them to

determine which neuro i should see. once they decide that, then they call

me to schedule the appt. So still waiting. For me it's seems like it's been

months but reality it's only been a week and two weeks since they were

faxed the first time. So really not that long.

I am not moving out of the Orlando area (or even Orlando) just another

place. One place I am looking at address is Orlando but it's on the edge of

Maitland, or Altamonte Springs area. Its really really small, two rooms,

bathroom, and kitchenette. But if I can make it work it would save me lots

of money. I will go look at it tomorrow night. Move probably won't take

place until July or August. Hey downsizing apartments maybe I will get rid

of lots of junk LOL. I am already putting things into a box, pulling out

suitcases I never use, or can't manage due to size now anyway, etc...and

plan on taking them to flea market. I did this several years ago and was

surprised how much money, ppl buying my junk LOL

I'm not feeling hopeless really. Just frustrated again with how doctors

treat or don't treat patients. Plus right now I feel I don't have a doctor

to turn to if needed. My primary is like yours, gives scripts, referrals,

orders routine labs. She has no clue what to do with me regarding these

neuro stuff. Most primarys this is what they do now. But at one time she

seemed to really care, communicated with me, worked with me, etc... now

seems she doesn't want to work with me. She actually informed me months ago

how frustrated and how she felt helpless not able to help me. I am just

feeling she and I have crossed boundaries. As she also has said she

considers me a friend as her I. But that has changed now, and if I try

communicating the response is harsh, almost put off etc... I really feel we

both just crossed boundaries.

My neuro I don't have appt until after I see someone as Shands, then I call

my neuro to make appt. But I called there I think last week due to having

numbness down entire left leg, numbness in right calf. his office told me to

go see my primary. I didn't want an appt with neuro, just to inform of this

as he has instructed me to do so. his office wouldn't even take the message

just said go to primary. i faxed info, requesting the fax be placed in my

perm medical record. I have asked for copies of his office notes for over a

month, (3 times) and still haven't rec'd. And no contact regarding this,

although Ihave left messages, and faxed. The neuro is a good guy, and I do

feel he has listened to me for most part, willing to send me for opinion

from someone more experience in HSP and/or PLS. So in a way he is putting

his own rep and name out there, sending me to someone else, with his

impression and diagnosis. I mean if Shands says no its wrong, that sorta

puts him on the spot imo so I don't beleive he would say HSP and/or PLS and

send me off. I am thankful he wants another opinion to confirm, but willing

to continue working with me even after that appt. He mentioned several times

go get the confirmation, he then can order tests, scripts, etc... locally.

then go to Shands once or twice a year. So he is ok, but his office staff

grrrr. I dn't have patience with incompetent office staff. I have to pay by

check my co-pay before seeing the neuro, they won't allow you to be seen if

don't pay. Yet I got a statement last week saying I haven't paid any of my

copays. His office evidently didn't post or do something with my checks.

The billing is recorded in the office, then sent to an offical billing

company to file insurance. But the office is suppose to show amount patient

paid, with check info. Well the office didn't do this. Thankfully the

billing company understood the problem, and all I ahd to do was tell them my

check number for those appts.

But if I move to other end of town, I would prefer having doctors closer by.

Primary won't be a problem changing as they really only gate keeper, don't

do much else. Neuro is another story. I plan on waiting to see what

happens at Shands, then what happens with my current Neuro. If I continue

feel confident in him I will stay, but let him know about his office staff.

If I don't feel as important to stay with him or feel need to change then I

have looked up a couple near where I may move. Talked with one's office on

the phone and was impressed. Of course talking on the phone to office staff

doesn't mean I would like the neuro. All this is on hold, nothing I need to

do anytime soon. Just looking ahead if needed.

For now, I will just wait to see if giong to Shands. While dealing with

symptoms that are brought on by the heat/humidity. Really I have so many

more problems in the summer then winter. yet most of those problems are

still invisible ones. Sorry if I sounded hopeless, I'm really not. Just

frustrated with dealing with symptoms, the heat, etc..

OOO, our director in our Clearwater/Tampa program has resigned effective May

31. So good chance I will be in Clearwater a lot in June, July and until we

hire a new director. Then once hire someone I usually spend around 3 months

training and supervising new director. So when I find out when I will be in

the area will let you guys over on that side of state know. Maybe I can

join up with some at somepoint.

sorry longwinded, I haven't learned to say things in a brief manner LOL

gentle hugs

marfla

Be Blessed

Re: Marfla

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him

since

1996 and he knows well after that many years and sees my progression and

has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like

we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches

anymore but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

Marsha, just hang in there. i know things are moving around you and at

times you think you're standing still but sooner then you think you will get

that

appointment at Shands . I know you will find your

answers.....................One thing at a time girl.

I hear people having problems with their doctors , I guess I've been lucky

with mine. My primary care doc is great, he even went on line to SP

Foundation site to check it out after I told him about it and gave him the

booklet on

PLS from Nord.

Flora

[Guest guest]

Well, cool that you will be down here in the area for a while soon....something

for us to look forward to. really looking forward to meeting flora in person

very soon as well, since i am feeling more up to doing things! as long as there

is a/c, I am there!!! too bad you couldn't try an appt with st pete neuro while

down here too....so really just want for you to have a good experience with a

doc for a change. i felt really put out when usf was done with me....they did

every test in the world tho, so that was a good thing and they were good to me

while there. i love good office staff and actually like my primary's office

staff better than my primary!! was opposite with previous primary when i had

real insurance.

so let us know about the shands thing---felt like at least a month or two

waiting for you to go over here too! take care of you and ice on back of neck

tends to cool body down fastest first---then slap them everywhere you can!!!

tawny

Marfla marfla04@...> wrote:

thanks tawny

I don't have an appt at Shands yet. My records have been sent there. My

understanding is once they have my records, someone there reviews them to

determine which neuro i should see. once they decide that, then they call

me to schedule the appt. So still waiting. For me it's seems like it's been

months but reality it's only been a week and two weeks since they were

faxed the first time. So really not that long.

I am not moving out of the Orlando area (or even Orlando) just another

place. One place I am looking at address is Orlando but it's on the edge of

Maitland, or Altamonte Springs area. Its really really small, two rooms,

bathroom, and kitchenette. But if I can make it work it would save me lots

of money. I will go look at it tomorrow night. Move probably won't take

place until July or August. Hey downsizing apartments maybe I will get rid

of lots of junk LOL. I am already putting things into a box, pulling out

suitcases I never use, or can't manage due to size now anyway, etc...and

plan on taking them to flea market. I did this several years ago and was

surprised how much money, ppl buying my junk LOL

I'm not feeling hopeless really. Just frustrated again with how doctors

treat or don't treat patients. Plus right now I feel I don't have a doctor

to turn to if needed. My primary is like yours, gives scripts, referrals,

orders routine labs. She has no clue what to do with me regarding these

neuro stuff. Most primarys this is what they do now. But at one time she

seemed to really care, communicated with me, worked with me, etc... now

seems she doesn't want to work with me. She actually informed me months ago

how frustrated and how she felt helpless not able to help me. I am just

feeling she and I have crossed boundaries. As she also has said she

considers me a friend as her I. But that has changed now, and if I try

communicating the response is harsh, almost put off etc... I really feel we

both just crossed boundaries.

My neuro I don't have appt until after I see someone as Shands, then I call

my neuro to make appt. But I called there I think last week due to having

numbness down entire left leg, numbness in right calf. his office told me to

go see my primary. I didn't want an appt with neuro, just to inform of this

as he has instructed me to do so. his office wouldn't even take the message

just said go to primary. i faxed info, requesting the fax be placed in my

perm medical record. I have asked for copies of his office notes for over a

month, (3 times) and still haven't rec'd. And no contact regarding this,

although Ihave left messages, and faxed. The neuro is a good guy, and I do

feel he has listened to me for most part, willing to send me for opinion

from someone more experience in HSP and/or PLS. So in a way he is putting

his own rep and name out there, sending me to someone else, with his

impression and diagnosis. I mean if Shands says no its wrong, that sorta

puts him on the spot imo so I don't beleive he would say HSP and/or PLS and

send me off. I am thankful he wants another opinion to confirm, but willing

to continue working with me even after that appt. He mentioned several times

go get the confirmation, he then can order tests, scripts, etc... locally.

then go to Shands once or twice a year. So he is ok, but his office staff

grrrr. I dn't have patience with incompetent office staff. I have to pay by

check my co-pay before seeing the neuro, they won't allow you to be seen if

don't pay. Yet I got a statement last week saying I haven't paid any of my

copays. His office evidently didn't post or do something with my checks.

The billing is recorded in the office, then sent to an offical billing

company to file insurance. But the office is suppose to show amount patient

paid, with check info. Well the office didn't do this. Thankfully the

billing company understood the problem, and all I ahd to do was tell them my

check number for those appts.

But if I move to other end of town, I would prefer having doctors closer by.

Primary won't be a problem changing as they really only gate keeper, don't

do much else. Neuro is another story. I plan on waiting to see what

happens at Shands, then what happens with my current Neuro. If I continue

feel confident in him I will stay, but let him know about his office staff.

If I don't feel as important to stay with him or feel need to change then I

have looked up a couple near where I may move. Talked with one's office on

the phone and was impressed. Of course talking on the phone to office staff

doesn't mean I would like the neuro. All this is on hold, nothing I need to

do anytime soon. Just looking ahead if needed.

For now, I will just wait to see if giong to Shands. While dealing with

symptoms that are brought on by the heat/humidity. Really I have so many

more problems in the summer then winter. yet most of those problems are

still invisible ones. Sorry if I sounded hopeless, I'm really not. Just

frustrated with dealing with symptoms, the heat, etc..

OOO, our director in our Clearwater/Tampa program has resigned effective May

31. So good chance I will be in Clearwater a lot in June, July and until we

hire a new director. Then once hire someone I usually spend around 3 months

training and supervising new director. So when I find out when I will be in

the area will let you guys over on that side of state know. Maybe I can

join up with some at somepoint.

sorry longwinded, I haven't learned to say things in a brief manner LOL

gentle hugs

marfla

Be Blessed

Re: Marfla

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him

since

1996 and he knows well after that many years and sees my progression and

has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like

we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches

anymore but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

oh yeah ice on neck. freeze wet washclothes and take when going out in the

heat. if have a cooler can keep them in a cooler until ready to use them.

We did this recently when went to ish Festival in Fort Lauderdale.

Beside the frozen washclothes, I also used those blue ice paks you freeze to

use in coolers. I put one behind back/lumbar area. Another under my legs

which I had up on a camping stool like thingie. Then I freeze water

bottles, and can put behind neck. Just to add frozen washclothes.

Good thought on seeing the neuro in St Pete while I am over there. Will

definitely consider this as well. Of course getting primary to request

another referral to yet another neuro, and then to get insurance to approve.

Ya know HMO's the more the refer the less they get in return at end of year.

Then to get insurance to approve another neuro is like pulling teeth too.

Although they say you have right to see who want as long as in plan, and

have right to second/third opinion..... insurance don't want to refer out

either to many neuro/doctors. But will check this out too.

thanks for idea.

gentle hugs

Be Blessed

Re: Marfla

Marsha, Tawny is right you will find a doctor soon. There are some that

truly listen to you. As you know Tawny and I have the same doctor and he

listens to everything I complain about and gets me either tested or gives me

help

with either med's or just recently physical therapy. I've been with him

since

1996 and he knows well after that many years and sees my progression and

has

a better picture of me. He also tells you if he doesn't have a clue and

gets you to others that can help. Wish everyone could find a doctor like

we

have.

On another note, I think its important that everyone that spends a great

deal of time indoors to get outdoors maybe just to sit on the porch or if

possible in a park. I know folks up north are just getting that chance. I

couldn't image not doing that, here in Florida I can't walk the beaches

anymore but

I can park my butt in a chair along a seashore or park and look across the

water. Its a great stress reliever..............Flora

[Guest guest]

thanks Flora

yes one day there will be clearer answers. for now i wait patiently

marfla

Be Blessed

Re: Marfla

> Marsha, just hang in there. i know things are moving around you and at

> times you think you're standing still but sooner then you think you will

> get that

> appointment at Shands . I know you will find your

> answers.....................One thing at a time girl.

>

> I hear people having problems with their doctors , I guess I've been lucky

> with mine. My primary care doc is great, he even went on line to SP

> Foundation site to check it out after I told him about it and gave him the

> booklet on

> PLS from Nord.

>

> Flora

>

>

>