My neurological appointment

[Ernie]

Hi everyone,

I am sorry that I did not give you the update of the appointment yesterday but I fainted 3 times during the interview and I was really exhausted and out of it. I had to be taken to the ER until I felt well enough to leave with a friend.

The appointment did not go as expected. I got in his office to learn that he is a specialist in epilepsy. So I asked the resident if I had an appointment with the wrong specialist and she said that he is a neurologist. So when the specialist came in he was wondering why my cardio referred me to him because there is a specialist in neuro-muscular disorder in the same hospital. The interview was on the aggressive side because I had waited for 3 hours and was exhausted, brain fogged and hungry. He had to repeat a few questions 2-3 times because I could not concentrate. Then the resident started the basic neurological tests and I fainted as soon as I stood from the exam table. I got up too soon (my ego) and stood again to continue the test and went down immediately! Boy what was I thinking about! The doctors told me to wait on the floor until I felt well enough to sit. So that ended the physical exam. I was disappointed at myself.

The neuro told me that I am a very very complicated case which cannot be diagnosed in 15 minutes. Ah! I was not aware of that! So he wants all my NIH medical file and he wants to research POTS and NCS on his data file. I told him that Dr Goldstein said that I am the only case like that that he met in 25 years but the neuro still wants to check if its the same disorder that causes the muscle problems. I am frustrated because I already know that it is something else.

He told the resident that I have some form of myotonia congenita or/and periodic paralysis. He told me that he did not have a diagnosis and that he has to research and will call me back when he is ready.

So I don?t know if I went there for nothing or if it?s positive.

I was well treated at the ER. The resident explained my case to the triage nurse and I was put in a semi-private room until I could leave. I think they gave me a semi private room vs corridor because of my high adrenaline rush.

The only test he ordered is an EMG which I have 1 year waiting list.

Ernie

[Jillybeanbme]

Dear Ernie,

I am so sorry your visit did not go well.

I don't mean to be rude, but where on earth do you live that it takes a year to have an EMG done? Are there a limited number of Neruologist in the area and this guy has a monopoly on things? Where I live the wait for an EMG is 2-3 weeks at the most! Is there a larger city close by with more neurologist ? We have three hospitals and competion is fierce. You should not have to wait a year! I'm sorry, but it angers me. You would think after the way things were in the office he would want to find out some answers sooner than one year!! There is such a thing as working in patients as in 'this patient needs this test done STAT' and putting them on cancellation lists to get them in sooner.

I wish you the best of luck.

Jill

[Ernie]

Hi Jill,

I live in the Province of Quebec in Canada in a large city. We have many hospitals but not enough doctors. Some people can't have a general practitionner because they don't take new patients. They have to be treated at the ER when they are sick. When a doctor retires you loose your doctor and you might not get another one. Here the medical system is like the third world. We have to wait a year to see a specialist and if he does not like your attitude he just tells you to find someone else. I had to go to Dr Grubb 2 years ago to get my diagnosis because no doctor here was qualified to do so. I payed out of pocket money and I am glad I went because it changed my life around.

Now I am starting to wonder if I need an American neuro-muscular disorder specialist to find the next diagnosis!

Ernie

[calypso]

Ernie,

I'm sorry things didn't go as planned. The ER is never fun. But maybe this guy really is going to do his homework. I'll keep my fingers crossed for you.

Amy

[Jillybeanbme]

Ernie,

I'm sorry your medical system is like that. People here in the US complain about high insurance premiums, but I would rather pay them and have the access to the healthcare that I need. Physician's here are paid well, therfore there are more of them. Granted they all are not in it for the right reasons, but at least we have more choices. My heart goes out to you and everyone else who has to deal with socialized medicine. I so wish there was something I could do to help.

Best wishes,

Jill

[Jersey Girl]

Dear Ernie,

I feel so bad you spent so long waiting and came away with so little. I hope the neurologist calls you back soon so you can get some answers. Please take care of yourself. Martha

[Guest Julia59]

Ernie,

As always my prayers are with you in your journey to get the answers you are looking for.

How awful to wait so long for a specialist. I feel so blessed to get into a specialist in at least a couple months. I think this Doc you went to sounded like he was at least willing to take the time to learn something about NCS/POTS----that's a plus.

It may turn out positive if he follows through with his plan to research all of this.

Your a trooper for hanging in there the way you do each day! I'm thinking positive thoughts for you to have a good outcome to this recent appointment.

Take care,

Julie :0)

[opus88]

Ernie,

Please don't be disappointed with yourself. You did the very best you could under much less than optimal circumstances. And maybe the fact that you passed out in front of them made them realize you really did have something going on, instead of just writing you off as a "hysteric" like so many of us have.

I'm glad the neuro at least asked for info on your condition and said he would research it. He may be very open to learning and could become a big ally. Let's hope!

Very best wishes with this new doctor. Stay positive, and keep us in the loop!

[Guest tearose]

Ernie, don't sound so down! It could be that this doctor will do the research and get back to you! I would suggest you sit down and write a letter thanking him for discussing your "unique" set of health issues and appreciation that he will be doing more research to help you. This way you can follow up in a month and see if he got anywhere on this. Sometimes it does take time. You unfortunately have to wait for the EMG, use that time to your advantage.

I think you did exceedingly well in light of the fact you passed out three times!

Don't get down on yourself!!!

I am glad they treated you well in the ER. Isn't is sad that we have come to "expect" a rough time from people who are suppose to help us.

best wishes, tearose

[avais1]

Ernie,

Have you ever thought about coming back down to Minnesota? If you need instant access back into Mayo, crash through their ER. My friend is a nurse in the Mayo ER, and that is her advice. I know it works, because I did it, and that's how I got to Dr. Low. In Minnesota, a facility cannot deny a patient care (example: no money). They have to treat you (unless you are threatening to the staff and dangerous - sometimes I wish I was strong enough to be ). Anyway, I hate to have you wait for another year like this.

Don't feel bad about your appointment. Your spirit is willing, but the flesh is weak. And that is NOT your fault. Good luck to you.

[briarrose]

Ernie

I'm so sorry for your horrible experience, what a waste of time and energy for the most part. I have heard that Canada's health care is that bad.

I was actually up in Canada for a few days last fall and was sick on the couch. I just layed and watched T.V. They aired a segment on women that chose to have their babies naturally with a midwife and then their primary doctor's won't take them back as patients, that is horrible too. They shouldn't be forced to have a baby the way their primary wants.

Anyway hang in there and maybe you should consider coming back to the U.S. to see a doc, I know that it's extremelly expensive for you but it might be worth it and I think the Mayo Clinic occasionally has studies in this area.

[yogini]

Hey Ernie,

Sorry to hear about your trip to the ER, but at least you were treated well. It sounds like this doctor is treating you seriously, and that's good. You mentioned that there is a neuro-muscular specialist in the hospital. Could you get in to see him too (or would there be a year wait for that too)? It sounds like the doctor who referred you made a mistake and sent you to the wrong doctor. I don't know if that would help you to move ahead in the waiting list...

I give you a lot of credit for being patient. I go nuts having to wait a week or two for an appointment, but that's nothing compared to what you have to go through in Canada. It scares me that some politicians here in the US often mention Canada as an example when talking about how to reform our own health care system!

-Rita

[ginger]

Ernie--

You have had sooo much waiting to do. My heart goes out to you! I agree with everyone above... it sounds as though this doc may actually do his homework. I'll pray for the best!

Keep us posted!

Ginger

[Ernie]

Thank you all for your wise word of encouragement.

This neurologist is pretty young, he graduated in 1999. So I guess he is about 33 years old. My cardiologist referred him because he is open minded and he likes challenges. The poor neuro told me that he did not expect a case like mine at the end of the day! I can understand that he felt discouraged by my case.

2 years ago I was told by a neurologist that he did not want me as a patient because I was too much work, I would not payoff and he was not interested in learning about me.

At least this young one says he wants to research to make his own mind on the subject. He is even willing to meet my family members who have the same muscle problems.

Maybe I am just panicking because of all the bad experiences I had with previous doctors. I hope that this one will stand up to his word.

Those of you in the US who have insurance, Medicare or Medicaid are better off than we are here in Quebec. Only the ones who don't have insurance and/or can't afford to pay are worst off than us.

Avais, thanks for the information. I was not aware of that but I will seriously consider it if things don't turn out here. Could you tell me more on how you did it? Maybe you could write me a personal email!

One thing I am proud of myself is that after the 2 syncopes the resident wanted to send me home and I kept telling her that I did not feel well enough to leave then. The resident told me that it was 5:00 and the office close at 4:00 and I had to go. The volunteer who drove me there wheeled me to the entrance and called the security guard and told them that I was too sick to leave the hospital. I was sitting in the wheelchair, I could not think clear but I knew I would faint outside in the cold 0F with 2 old people in their 70s who would panic. Then I would be paralysed for at least 10 minutes on the ground and would have to wait for a stretcher and people to lift me up. The only thing I kept saying was "I won't make it to the car." So, this is when the resident sent me to the ER. I am glad that I was kept in the building until I could safely make it to the car.

I think I have a variation of the white coat syndrome. When I see a doctor I automatically assume that I will be made fun off, ridiculed and mistreated. I wish one day I will forget all the bad experiences I had in the medical world.

I might get some more news this week as I called the cardiologist on Friday and I also left a message at my PCP's office.

Ernie

[DawnA]

Your appointment sounds somewhat positive with the fact that he is openminded and sounds willing to look furthur into things. it is too bad he is not a neuromuscular specialist, but maybe that doctor would of not been so openminded. The Canadian healthcar system sounds really frustrating. how can they diagnose anything. You have to wait a whole year for an EMG. That is crazy.

I like someones idea of going to Mayo to visit. You could faint on the street then go by ambulance to the ER. I was told to do that when I kept getting rejected from Mayo. In your case it sounds like the only way to get answers. Would the canadian healthcare system have to pay for that visit?

You are in my thoughts and prayers. You deserve answers!!!

DawnA

[Ernie]

I think it's a good idea.

When I went to see Dr Grubb I was at the MCO bookstore paying for his "Syncope" book. I told the cashier that I was feeling wrotten and passed out on her.

So I was rushed to the ER and Dr Grubb came to see me.

I guess I could have a similar accident close by Mayo!

Is that what you did Dawn?

Ernie

[MightyMouse]

Ernie, I hope you've stopped feeling disappointed with yourself over the fainting stuff--you can't help it! If your body played fair, you wouldn't faint...but it doesn't follow directions (mine doesn't either, so I hope it helps to know that everyone on this board has a body that's misbehaving).

Sorry you have to wait so long for specialists and special tests. That's just crazy.

Nina

[DawnA]

No Ernie, I did not do that. I am not one to pass out. The way I would of had to do it was stop taking meds and really overdo myself. That would of put me in a metabloic crisis. For a long time I thought that maybe I just had dysautonomia and the rest of my symptoms were because of a conversion reaction. So I did not bother. Finally it was prven that there was something going on with my muscles and i was ataxic. That is when they decided to do the muscle biopsy. After the abnormal muscle biopsy, a friend from the mito support forum strongly suggested I se Dr Whiteman who specialized in metabolic diseases. When I called Mayo and told them about my report they scheduled an appointment.

Also, At first my insurance did not cover Mayo. That is why the ER thing was suggested. Now I have insurance that covers Mayo clinic. I feel so very fortuante not to have to wait a whole year for tests. I could not stand that. It just does not amke sense.

Best Wishes,

dawn a

[Ernie]

Hi Dawn,

Sorry about the question. When I read your answer I remember you posting about it not long ago. You had a real difficult time too getting into Mayo. I will really have to figure out how to get into to proper department. I don't want to see Dr Low but it would be someone in Metabolic or Neuromuscular disorder.

I really hope to get the help in my own country but it is safe to know that there are other options.

Ernie

[spirlhelix]

Hi, Ernie

Do you or your other family members have low serum potassium levels? This result can be found on a renal blood test. Low potassium can lead to periodic paralysis. It would also go along with your brother's adrenal hyperplasia.

Have your doctors tested for Conn's syndrome?

Is there a history of hypertension or stroke in your family, sometimes with low potassium? If so, I would ask the doctors to test for Glucocorticoid Responsive Aldosteronism. There is a genetic test available by Dr. Lifton of Yale University.

Wishing you the best!

Warmly,

Pam

[Miriam Poorman-Knox]

Hi,

Sorry you had such a bad experience. We have some friends who are docs in canada and I think your best plan is to keep calling them and having them contact on your behalf. It is a complicated system, DISEASE, and life. Always remember to have your BP checked if you are unsure of leaving- legally they can't discharge you if you still have the same symptoms you came with. Low BP is dangerous!!!!

[Ernie]

Hi Pam,

There are a lot of my family members with hypertension and some have had strokes.

I know at least 3 have low potassium but I was never below the normal low side.

I was tested for Cushing and it's negative.

I have not been tested for Conn's. I could check with my doctor.

Thanks for your help.

Ernie

[spirlhelix]

Hi, Ernie

Your family history seems very suggestive of familial primary aldosteronism.

If I understand it correctly, even low normal potassium can cause "periodic paralysis" problems for many people.

Sadly, most doctors know very little about Conn's or Glucocorticoid Responsive Aldosteronism (the condition which affects families). I encourage you to try out this list just so you can get some ammunition to bring with you to the doctor, so you can get the testing done promptly and without errors.

http://health.groups.yahoo.com/group/hyperaldosteronism/

Dr. Grim runs the list and he will be happy to assist you in finding the best way to get tested and understand the results.

Best wishes to you, and I hope to see you on the hyperaldosteronism list!

Warmly,

Pam

[Ernie]

Hi Pam,

Thank you very much for the forum. I have just posted about this muscle problem and I will see what happens.

Ernie