Re: New to List and need advice

[Guest guest]

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, OH

wanda_t36@...

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