tachyfor50years

http://www.youtube.com/watch?v=2wqjXqGo6cM

Dear Ley, you are not a lone, you can see my reply to another post on this link:

http://forums.dinet.org/index.php?/topic/22977-supported-studies-point-to-possibility-that-dietary-salt-may-stimulate-activity-of-key-immune-cells-involved-in-ms-attacks/

Thank you guys for your reply.

Yes Rachel I had an allergic reaction.

northerndarlene, Feeling any better? I always experience that severe burning pain in my upper back and neck, nothing helps.

Does anyone know anything about a relationship between Cortisone shots and flaring of POTS? I felt horrible after my Dr. gave me a shot in my shoulder, I was sick for 3 days and my temperature reached 102.

I will be grateful for any input.

Add me to this list! My Dr. put me on 50,000 Units Cap D2, It made me very sick and when I told him about my reaction, he said: Well, you have no other option but the sun!

Sue1234,

You are right about the Glucose test, that is not a problem but I really want to know how do they schedule patients from overseas!

I told them that I have no problem staying there for one or even 2 weeks to have those tests.

Joan,

Trust me I did, but she had no clue except that she was reading from a computer screen that I have been scheduled for 1 day appointment!

I think it will be better if I go ahead and cancel it because I really don't want to get upset and hopeless this time with one of the top centers in the US.

The only thing that I think of is my age, I am over 50.

I will pm you about this place!

I don't know about this topic much but I have noticed that some foods provoke and worsen my symptoms such as:

1) Artificial sweeteners.

2) Preservatives.

3) Hormones and other bad ingredients added to Cheese, milk and other diary products.

4) Non organic eggs

5) MSG

So, for me, it is much better when I avoid these altogether.

Prayers for your son.

Thank you Jackie for your reply, you are right, it is not Mayo!

Thank you Looneymom, Yes, this place that I am referring to is one of those that you have mentioned!

I am really surprised and even shocked at their decision with me!

This center has all those tests yet they are not planning to allow me to have them, why? They are not telling me.

I am so upset and disappointed because my insurance does not cover the other top dysotonomia centers.

I have done my best and had walked on the shoulders of giants before I write this post and ask for help, all I need is some answers: This forum is my only open window!

I have been trying for over 15 years to get an appointment with one of the autonomic dysfunction centers in the US since I live in a state that has no doctor familiar with POTS.

Finally, My Dr. and my insurance approved that lifetime appointment, but, here I am struggling again, this time with this high recommended POTS center who gave me a one day Consultation Appointment .

I really want to have some of the following tests if not all. (Most of them are unavailable in my state and I have an approval from my health insurance for most of them):

1) (QSART).

2) Mast Cell Disease.

3) Small fiber neuropathy.

4) Immune system tests.

5) Circulating blood volume tests.

6) Insulin levels and glucose tolerance tests.

7) SPECT and xenon SPECT scans of the brain.

8) Mitochondrial myopathies

One day appointment will not do me any good and this is my last chance.

I don't want to stay like that until I die, spinning my wheels, going nowhere with my treatment.

I don't understand why they refuse to keep me there for some days and have these tests

get done. I really don’t want them to tell me come back after some months to have these tests done; I

want to save time, energy and money.

I have sent them a pile of my medical records which proves POTS, NMH, A fib, SVT, CFS.

I feel like I am trapped by the medical system.

Please tell me what to do and how can I convince them to keep me there for the tests.

I emailed my ex electrophysiologist to speak with them but he never replied (he is retired now).

Am I at a dead end? Hope not.

If you have any suggestion, please tell me, I will be grateful.

Notes

1) When I asked the center why is that, they told me that it has been always like that and the Dr. sees the patient for only one day.

2) I asked them to take me as a volunteer patient for their studies after my appointment, but they told me that I am not qualified and when I asked why, they said we don't know, the doctor did not tell us.

Some input please!

Thanks Jackie M.

Before I post this, I tried the search button on this forum to find what I need to know about this center but I was unsuccessful.

After walking on the shoulders of giants, finnaly I have a referral to this center.

Do you know:

1) How many days they usually keep you as an outpatient?

2) There are many Doctors there, do you recommend one for me?

3) Do you recommend a reasonable desent hotel close to them?

Thanks in advance!

Good luck Jackie M!

I was only 5 years old when I 1st passed out; I was diagnosed at age 50 after I showed an article to my cardiologist from Mayo clinic.

All those years, I have never lived a symptom free life, even one day.

Have you seen this?

http://irishdysautonomia.wordpress.com/

Hope this will help you.

My Dr. usually replies within 24 hours, but the last time I emailed him asking him to put me on IV Saline once or twice a week, he never replied and that was 3 weeks a go, I emailed some good articles about that too.

res,you are not a lone!

Dear Freaked,

I understand your frustration and I know very well your pain, I hope you find some answers.

I live in the US and having hard time to find a good Dr. that knows or at least believes in Dysautonomia.

There are many excellent people on this forum, I hope that they will be a great help for you.

Take care

Thanks alex.

It is very sad, 2 burnt bodies were found today, both were in the garage of their home near a vehicle with its doors open. They appeared to be getting ready to leave but they never made it.

Oh no, sorry to hear that, I thought that it depends on the insurances that he takes.

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

Few weeks a go, I asked my GP to order iv for me, he never listened to me and when I asked why, he never answered me, I emailed him some good articles on the benefits of iv saline for POTS patients.

I usually feel close to normal whenever I had it.

Thank you Hope & looneymom.

360 houses are burnt to the ground, 14 have been damaged.

I live very close to the disaster area and feel overwhelmed.

Loved this fact:

The only domain in which POTS patients did not fare worse than the control group was mental health.

I did not understand one thing though, the researcher was mentioning a patient one time and subjects another time; Was this study about one patient or a group?

Thanks alex.

There are a lot of Mandatory Evacuations in our area right now, the last I heard the Royal Gorge Bridge is not on fire, but yes it is in danger.

Record high temperatures, extreme dryness and strong winds all ganged up on this wonderful city, please pray for us.