Ernie

Hi,

When I started to be acutely sick 4 years ago I lost about half my hair. I had hair below my waist at that time. A year later I had it cut short and it came back. Whenever it gets to a certain length (shoulder) it starts to fall out again. So I know it is time to cut it again. I don't know why it falls like this but it scary.

Ernie

Congradulation.

Ernie

I just found a doc who wants to investigate (many tests) my case to find why I have muscle weakness and paralysis. My question is: Is is worth to investigate in muscular neurology or should I just be satisfied with a POTS and NCS diagnosis?

Personaly I feel that until we find the reason of my muscle weakness and paralysis I will not be able to improve some more. But I am afraid that the doctors or other people will tell me that I am making the government spend money on my case for nothing.

What do you think?

Thanks

Ernie

I get much more symptomatic during ovulation and menstruation. I have been told it is because of the difference in hormones levels.

Ernie

Hi Blackwolf,

I can relate to your situation. What helps me when it happens it to remember that I will have good days again. Sometimes it will last for weeks and suddenly I come out of it.

I think it is a good idea to go to the hospital for the testing. The more you know about your body the more chances you have of getting out of the crash fast.

Some doctors prefer to say that we are nut case than to admit that they don't know what we have. I highly respect a doctor who will admit to me that he does not know what I have.

Good luck,

Ernie

Hi Julia,

I am no expert but I think it is because you overdid it. I will probably take a few weeks of rest to get back to your baseline.

Ernie

Hi Jessica,

I am happy that you are progressing so well. I think it is a good idea to try to get your life back.

Ernie

Hi Amy,

Welcome to the forum. You met some really nice people. It's nice to have them around.

Ernie

Hi,

I am so sorry you are having so much trouble. I would go back to Dr Grubb and also try to find another GP who believes in me. Could you get a copy of your medical file and send that for your disability?

Ernie

Congradulation, what a success. Time to celebrate.

Ernie

Hi Veryblue,

Good luck with your tests. I surely hope that you will get your life back. Keep us posted.

Ernie

Hi,

Personally I would not be able to manage a TTT 2 days before going overseas. It takes me 5 days to recuperate from a TTT. I would wait until after my trip. I don't think 2 weeks later will make a difference in your diagnosis but you will have a much safer trip.

Ernie

Hi,

I am sorry you are feeling so crappy. I agree with you that you did a lot of things at the same time. I don't know if you were trying to wean off your medication or stopping it for the TTT but maybe you could go back on your regular dosage and wean them back when you start to feel better. If it was only for the TTT then should be back on them.

I think you had a normal reaction to a TTT for someone who has the disorder. It usually takes me 5-7 days to recuperate from a TTT.

Good luck

Ernie

Have you tried a beta blocker. It takes about 15-20 minutes to slow my heart down.

Ernie

Hi Susan,

If you want to have your adrenaline and norepinephrine tested you can ask for a catecholamine test. It is a blood test. They first take a blood sample supine and then another blood test after being upright for 5 minutes.

Ernie

Corina and Julia,

Well I just came back from seing my cardiologist and he told me that my receptors are borderline normal and that I have extremely high adrenaline and norepinephrine levels. He added that I am extremely sick. It made me feel good to be validated by a specialist. He wants me back in 6 months to do some further testing to find why I paralyse when I faint. (He needs to buy the equipment first!). I am very satisfied with my visit with him.

I spent a day visiting Niagara Falls (in the wheelchair) to celebrate. I enjoyed every moment of my visit. I am glad I have a wonderful friend who drives me and takes care of me. (Remember her Julia?) We went to the Butterfly garden, on the boat, on the lift, under the falls and we had our supper about 5 feet from the falls. We were soaken wet but so thrilled.

I have finally found a Canadian doctor who believes me. He said I have cerebral syncope which he says is extremely rare. He is a friend of Dr Grubb and they have studied medicine together.

I was so excited when I left his office. He is the first Canadian specialist who wants to have me as a patient. All the others I saw said that I was "too sick" and just flushed me out. It's a 20 hour round trip but well worth it.

Thanks for your support

Ernie

Hi everyone,

I am going back to my cardiologist to get the result of my TTT and all the tests they did. Wish me luck!

Ernie

Hi Julia,

I would tell my concerns to Dr Grubb and ask him directly if he could order the DNA test for EDS and if he does not want to I would look for another doctor who would order the test.

Ernie

I'll be praying for you.

Ernie

I Runnergirl,

I take Propranolol (BB) and Proamatine and this is the best treatment I have atteined so far.

Ernie

Hi Morgan,

My brother had high blood pressure, arythmia but the one that is interesting for us is POTS and NCS. He died 3 months ago and we gave his body for research on dysautonomia. Doctors are wondering if there is a link between enlarged adrenals and POTS. This is why I would like to be tested because I have EXTREMELY high catecholamine levels when I stand and faint.

I know most endocrinologist specialise in thyriod problems and diabetes but where do we go for adrenals problems?

Thanks

Hi,

I just learned that my brother's adrenals were twice the size of normal adrenals. I was wondering if any of you know how to measure the adrenals and what tests can be performed on mine to find out why I have so much adrenaline?

Ernie

Hi,

Welcome to the Forum,

Some of us have a "normal" life, others have an "adjusted" life. I have been a couch potato for 4 years now. I used to be a workaolic. It takes time to find the tricks, good medication and your limits but perserverance is important.

Ernie

Hi Morgan,

I had a similar problem 6 months ago. I was taking 60 mg Inderal on top of the Propranolol and my HR was about 48 and I was fainting because of it. So I decided to lower the BB and now my HR is around 58-60 and I feel much better. Maybe you could check your BB dosage.

Ernie

Hi Sue,

Congradulation. I am really excited for you. I am sure you will enjoy it. The couple seem like very understanding people.

Keep us posted on how it goes.

Ernie