To Wanda>Re: New to List and need advice

[Guest guest]

Hi Wanda.

Welcome.

So much to say... Where to begin?

How about with my email addresses: pulalupu@... and

rehoboth@...

If I can be of any support to you or your husband, please let me know.

I'm afraid I can't respond to all of this now, so I'll copy this and

write as I can.

Let me just say for now, welcome, and... I can relate. I was

blessed to get an immediate referral to Mayo after the Tulsa experts

couldn't figure anything out. Mayo ran all the usual neuro tests,

and abnormalities abounded - apparently not enough at that time to

qualify a diagnosis of MSA - just autonomic neuropathy. Since that

time, my symptoms have progressed, and PD symptoms have become more

pronounced - so, who knows what they'd say now.

Anyway, if I should forget to get back with you - please email me.

Also, again, welcome. I'm sure you'll find all sorts of help and

useful info here. This is a great group. A true family - which - by

very nature is not immune to discord from time to time - but a great

family none-the-less :-)

Anyway, another reason I wanted to write... is that I too have

children - 3... ages 11, 7 and 6. And, I too am a bit out of the

norm on age... having just turned 40. Even in that category, your

husband is not alone.

Please frequent this site, and ask as many questions as you like.

Again, welcome. I'll try to respond in more depth soon, either via

group forum, or email.

Have a great day.

>

> My husband has been having many problems for the past two years.

He originally started out with angina type chest pain. All the

monitors, stress tests and catherizations were negative for coronary

artery disease. But the cath and an echo cardiogram showed some

leaking of his valves and that he had abnormal blood flow in his

legs, which I now believe to be due to pooling of blood in his legs.

Also, the echo on his corotid arteries showed that the blood flow was

prograde and I read somewhere that people with MSA or autonomic

dysfunction sometimes had these arteries permanently dilated as if

they couldn't constrict normally.

>

> After many trips to the ER where he had angina and really high BP

and arrythmia and we were always sent home and told nothing was

wrong, we asked our doctor to send us to Cleveland Clinic. He had

also developed neurological symptoms such as syncope, and fainting

and memory problems and difficulty thinking and falls down frequently

and has sleep apnea type problems. We have been getting jacked around

there all summer.

>

> We only have a diagnosis of POTS so far, but he has alot of the MSA

symptoms which is why our doctor sent us up there to start with. The

neurologist who saw us was a good doctor, but he wanted Jerry to have

all of these other tests done and they drug them out all summer(since

April) and we haven't been able to get back in to see him since the

other specialists ran them. He had several Pulmonary Tests and due to

his visual and hearing problems he had to go to a opthalmologist up

there who told him he was a liar or a psych patient because he(the

doctor) couldn't find out why he can't see out his right eye. The

sycope doctor who ran his tilt table test, said he had POTS and an

arrythmia, but then she said he was on too much medicine for his back

problems and referred him to their spine clinic for a second opinion

on his back. They agreed with our pain management specialist that he

does not take too much meds considering the shape his back is in. We

have had 3 appointments with the cardiologist at Cleveland and all 3

have been cancelled and moved back now until October. The

Neurologist has been out of town on a fellowship and we can't see him

until the end of this month.

>

> To get to the point here, I found out on the dysautomia web site

that there is a doctor in Columbus, at Ohio State, who specializes in

this stuff. Any suggestions here? Our doctor is trying to get us an

appointment set up.

>

> I know there are alot of tests such as CT and MRI and PET scans and

auto immune blood tests and sweat tests that need to be ran, but we

need a doctor who can run them and do it right.

>

> We are trying to get disability since he can no longer do his job

as a union carpenter because it is dangerous to climb if you pass

out, but SSA says he could do another less dangerous job. Where can

you work if you are on pain meds, can't drive, can't remember to take

your own meds and eat and can't stand or get too hot or cold?

>

> Of some significance here is the fact that he is younger than the

typical MSA patient he is 41. But he has been in close exposure to

alot of hazardous chemicals and that could account for the problem.

Also he had alot of childhood illness that could have triggered auto

immune problems.

>

> Another new person to the list said her mother developed problems

after hip surgery? Do you suppose bone marrow problems could have

affected her immunity? My husband became ill after hip surgery, too.

>

> The meds he is on are

>

> Proamitine (florinef didn't work and proamitine is only helping

some)

>

> neurontin, valium, oxycontin and lortab( for pain)

>

> celexa(anti depressant)

>

> I read that neurontin and celexa help with autonomic problems.

>

> I can use any support I can get, we have 2 children at home and our

future seems very uncertain with no income.

>

>

> Wanda L. () Thacker Chesapeake, OHwanda_t36@y... Genealogy

URL'swww.familytreemaker.com/users/t/h/a/Wanda-L-

Thackerwww.wandathacker.50megs.com

>

>

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