SSI/voc rehab/cmt /pn

[Guest guest]

I can't help the person who requested info on SSI but

I need the same kind of help. Actually. if any of you

have any thpoights about how to resolve my situatation

with DVR and doctors that would be most helpful.

I have CMT Type II, along with thrauma induced

injuries from fourcar accidents. To be brief...I was

first rear ended and hurt badly in 1985 when I was

coaching college swimming, working out hard every day

and working to complete a Masters in Sport Science

with a specialty in Aquatics. My most serious injury

was right sided thoracic outlet syndrome. TOS is a

condition where the blood vessels and nerves that go

to the arm are compresed by muscle spasm. From that

night on, I could never swim hard again. It took a

year to be diagnosed. I tried to get through but could

barely hold my heard up without using my hands and I

coud not write one legible paragrapg without my radial

pulse stopping and my right arm feeling like it was in

a blood presure cuff with the squeezing turned up all

they way. It never got all better. Since then I've

been rearended twice more, once very hard by a hit and

run driver. Last year an insurance doctor put me on

klonopin which made me lose consciopusness while

driving and I ran into trees and a parked car and did

$13,000 worth of damage to the car and at least that

to my body.

Along the line I went back to school which was

tremendously hard physically and I became an

Occupational Therapy Assistant. I moved to Florida

whith my family to get out of cold NJ. I started a new

aquatic therapy program for the l9cal hospital and

then the week before I was supposed to go on the

payroll they said they couldn't hire me becase of my

disability. For Real. Lawyers said I wouldn't be able

to prove it.

Since then I got a swim school and aquatic therapy

program off the ground in my bak yard pool. I'm doing

a great job and getting wonderful word of mouth

advertising but I cannot afford to advertise at all

right now.

Here's the thing. In December I saw Br.WalterBradley,

top neurologist and specialist in CMT at U of Miami.

This was through the MDA. He was very nice but he did

not take any of my trauma induced problems into

account and did not even do the neurological test for

TOS, which is part of the source ofmy arm pain. I have

had lancinating pain in both arms for at least twelve

years. My hands look small but relatively normal. just

a small amount of atrophy. Same with my feet. Almost

no meat on the front, pes cavus, hammer toes, and near

constant cramps on the tops of my feet near my ankles.

My ankles are very very stiff. I didn't even get to

mention that...there was so much history. No ankle

jerks, of course. Back problems as well (long time

herniated discs controlled by the work I do in the

water.. But my arms cramp and flex uncontrollably and

terribly opainfull with overuse. The problem is that

this does not show if thery're ok at the tim eopf the

edxam. Even if it does show no doctor has egver acted

like he lknew or cared what was going on with this

particular phenomen. My balance is good, but not as

gfoood as it was. The problem is that on one test I am

very strong. Just test me ten times and I can't lift a

coffee cup and I need lots of time to recover. It

makes life impossible. But most doctors only test me

once, no atterwhat I say.

The doctor concluded that although I have sever pain

and fatigue, my " fixed neurologic deficits " are

actually quite mild.

My DVR counselor pounced on that one line and ignored

all else. She refused to read the rest of my

medicalinfo. She says that line disqualifies me for

servioces. I am not going to be able to make it

physically without help from them. I hated to bother

the doctor again. Remeber < I onlyu saw him once. But

I wrote to him explaining that they put all their

emphasis on that line and want to disqualify me. Maybe

I wasn't clear enough in my request. I needed him to

explain what " fixed neurological deficits " means, and

how my problems are more problems of endurance.

Testing strength pnce does not show how hard it is to

do my work.

I have been living on (earning, no disability) on

$12,000 a year for the past 20 years. I am trying to

do this work because it is my best option. Nowmy DVR

Counselor is tellingme to apply for SSI. I called them

and they said you cannot own a business and collect

SSI.

My regular dr (the one who gave me klonopin) doesn'6t

want tp treat me befcause my condition is too

complicated. (I don't think he's competent either. But

his secretary says if I wriote a letter about what he

should say he'll at least help meout that way

(presumably if it will get rid of me.

I need things like speech tp text tecnology and other

help with my busioness. If it doesn't become

profitable soon it is truly my last try. I've been

working toward this sincew the early eighties. I

wasn't diagnosee until the CMT symptoms got so much

worse in the mid nineties.

I have a rotten DVR counselor and will request a

change. She says she thinks my problems are

psychosomatic if I have all these problems and I muct

be bringing the hand pain on myself because I talk

like an Italian anduse my hands. I reported that.

But bottom line---the supervisor says it all comes

down to that line. I askeed the doc for a

clarification and he said the same thing all over

again. " Mild fixed neurolical deficits " but severe

pain and fatigue.

I'm asking my chiropractor to clarify iot. too, but

they don't often listen to chiroprqactors. I miss

going to the U pf PA where my physiatrist totally knew

what wasgoing on with me. Obviously I need to find a

better doc. I have clear objective EMG evidence but

doctors see me as a person who's in the pool allday,

works, is positive and enthusiastic and my feet sare

not as crippled as a lot odf people's. But it's hard

for me to prepare one meal!

The chiro suggests doing a functional capacity evql to

docu,ent my weakness after use. I've doneit before and

would do it again but l;ast time it toook me more than

a mon6h to recover and I can't afford that.I must

provide the DVR with something that explains that

fixed deficits means fixed and mine vary with

activity. I don't have much time and now I'm busy

trying to put together a presetation on " Swimming and

water exercise for peripheral neuropathy. "

This is a very long post. Hopefully, different people

may be able to respond to different aspects.

1-The truly crucial one is about the fixed deficits

being mild (while I know from personal experience that

many people who are classified as severe based on how

crippled their feet are or whatever, are on disability

and truly ableto do much more than I can in daiy life.

2--------The question about cmt vs. other forms of pn

is important as well.

3--------Do you folks know the truth about if you can

collect SSI when you own a business (even if you're

not yet making a profit)? SSI said no, my counselor

said yes and I supect she's leading me on a wild goose

chase to get rid of me. Seriously.

Thank you everyone for being there to share your

knowledge and experience with these dilemmas.

P>S> I really can spell. Just not real nimble and in a

hurry. Thanks for understanding.

Deni

[Guest guest]

Deni,

I'm not clear on why Social Security is using the medical reports from only one

of your past

doctors. You said that you have gone to the U of PA to see a physiatrist who

totally knew

what was going on with you. Have his office send your medical records to Social

Security.

I know when I reapplied they needed to rebuild my medical file and wanted

reports from

all the doctors I have seen for CMT related issues. (I also had gone to a

neurologist that

knew very little about CMT and blew off a lot of my symptoms.) Typically Soc.

Sec. wants

as many records and information as they can get to make a determination on who

is

applicable for benefits.

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