Fifth Diagnosis

[Mary P]

Hello to all DINET friends. I haven't posted for a long time. I've been through the wringer and haven't felt up to posting.

I've been diagnosed with : 1)PAF and/orOrthostatic Hypotension with PD-like symptoms.

I've been diagnosed with : 2)There's Nothing wrong with you, just go home and exercise. 3)Neurally mediated hypotension hypotension. (Both 2 & 3 were by the same ANS dr. He told me that nothing was wrong. He told my GP that it was NMH.

4)Parkinson's.....5)Multiple System Atrophy or Shy Drager. (Both 4 and 5 were by the same Movement Disorder Neurologist. He told me Parkinson's. He told my GP I had MSA.

I need a second opinion on this MSA diagnosis because I know it can be connected to Parkinson's. I have a brother with PD and my dad had PD.

I have a good DINET friend who advises that I seek a second diagnosis as regards MSA because one dr told her she had MSA and the next dr said it was POTS.

It's extremely difficult to find one. Has anyone seen a caring MSA dr in Canada? The one I saw is in Kingston, ON. He was a caring man but I feel he really betrayed me by telling me one thing and my GP another. My GP hasn't even heard of MSA. She knows of nothing except Parkinson's.

Has anyone here had a similar experience with an MSA diagnosis? Has anyone had a dr tell them one thing and then tell your GP something else?

Has anyone gone to the USA to see a dr whose specialty is with MSA patients? If so, where and who?

My GP can't do anything for me and she doesn't want to learn. I know enough about MSA to make me just want to go to sleep and not wake up.

Thanks for listening.

Mary P

[Ernie]

Hi Mary,

I am sorry you are having a hard time get diagnosed.

I had a doctor, the number one syncope specialist in Canada scheduling me for a TTT and sending the report to my GP saying that I had Munchaussen without doing any tests. Just is gut feeling. Then when other specialists called him to get his opnion he would tell them I had Munchaussen so no other doctor took my case. I had to go to NIH go get diagnosed and now I am followed by Dr Grubb. I don't know if he treats MSA patients.

[ajw4790]

Hi,

Sorry for the diagnosis confusion. I don't know anything about Canadian drs. or drs. that specialize in MSA. I wonder if Mayo would be a good place to try?

I hope you find some more answers soon!

[Mary P]

Hi Mary,

I am sorry you are having a hard time get diagnosed.

I had a doctor, the number one syncope specialist in Canada scheduling me for a TTT and sending the report to my GP saying that I had Munchaussen without doing any tests. Just is gut feeling. Then when other specialists called him to get his opnion he would tell them I had Munchaussen so no other doctor took my case. I had to go to NIH go get diagnosed and now I am followed by Dr Grubb. I don't know if he treats MSA patients.

Hi Ernie,

Please excuse my lack of knowledge but does NIH stand for? Is Dr. Grubb back at work yet? I may wind up trying to see him.

Like you, the specialist who diagnosed me with MSA with Parkinson characteristics did no tests..just a few simple muscle response exercises.

Thank you for your response.

Mary P

[flop]

NIH is National Institutes of Health (USA).

Dr Grubb (as far as I know) is working but does have to re-arrange/cancel some clinics. He has always had a long waiting list so if you are thinking of seeing him it is best to get the referal sent so that you are on the list.

You need to get a diagnosis from a doctor who knows exactly what they are dealing with (autonomic problems) and can explain to you what your tests mean and what the diagnosis is. I find it hard to accept that they can tell you one diagnosis and your GP another - I know that they may not want to frighten you but they should be able to explain things honestly. Until you get some answers from a doctor that you trust try not to worry too much about what may be the problem and keep searching for the answers!

Flop

[Ernie]

Hi Flop,

Thanks for the definitions.

Hi Mary

I am astouned that you were diagnosed with MSA without any tests. I agree that you need a second opinion but with a doctor who will test you!

[icthus]

On several occasions I've had the doctor tell me one thing and tell the referring doctor something else. It's sad. I'm sorry it happened to you. I'm right now petitioning my neuro at Froedert (Milwaukee) to test me for PAF/MSA rather than do the routine POTS stuff. I just want answers like you.

My guy is pretty knowledgeable although he is reticent to tell his patients the tough news. Look up his bio on the link below and see what you think. Froedert Hospital, Milwaukee, WI, Safwan Jaradeh. He's also chief of neurology and teaches at the Milwaukee School of Medicine (I think that's the name).

http://www.froedtert.com/PatientInformatio...ile.htm?id=1613

Listed below are his specialties in the field of neurology:

Neuromuscular Disease, Peripheral Neuropathies, Autonomic Disorders, Neuromuscular Pathology, Myasthenia Gravis, Electromyography (EMG), Neurogenetics

Hope this helps.

[Heiferly]

If you are willing/able to travel to the US, I would recommend Dr. Grubb. I am already at one of US News and World Report's "Top Hospitals," and even so, my cardiologist is sending me to Dr. Grubb because he said Dr. Grubb is THE guy to go to for autonomic stuff. He has published textbooks on this stuff, and many articles in medical journals. My cardiologist says he has sent other patients to Dr. Grubb who were not doing very well, and Dr. Grubb helped them immensely. As I believe someone else mentioned, there is a long wait to see him so if you do decide to, try and get the referral as soon as you can.