lalalisa

Just thought I'd "Bump" this and see what happens. =)

Keely,

Hello!! I just wanted to write and welcome you to the forum. We're glad you're here!

I hope you find lots of help and encouragement here,

Lisa

Happy Birthday!!!!!

Hope you have a great time celebrating!

Lisa

Just wanted to do a follow up poll after reading this poll: http://dinet.ipbhost.com/index.php?showtopic=9773

Thanks!

Lisa

Grace,

Hello, I had a really specific blood volume test done because my dr. told me that there weren't any accurate blood volume tests available. I researched the methods and found this one that is very accurate. They offer it at select hospitals...there is more info about the test and places that offer it if you're interested.

http://www.daxor.com/bva100.asp

The BVA-100 is a semi-automated Blood Volume Analyzer used in conjunction with a single-use diagnostic kit. It is the first instrument to provide rapid direct measurement of a patient's blood volume.

Blood volume measurements have been available for almost 60 years. The test often required 4 to 8 hours to perform and was very difficult to perform accurately. Because of this, blood volume measurements were rarely obtained. Physicians have been forced to rely on "surrogate" or substitute tests , such as hemoglobin or hematocrit which only measures the thickness of blood. Such tests can be highly misleading in many surgical and medical situations.

The BVA-100 can measure blood volume in approximately 1.5 hours. In an emergency, preliminary results can be obtained within half an hour. In addition to accurately measuring a patients blood volume, the BVA-100 also determines each individual patients normal blood volume and compares the measured volume to that patients norm.

For the first time, physicians have access to technology which enables them to obtain blood volume measurement rapidly and with a high degree of precision. Blood volume measurements can be instrumental in diagnosing and determining appropriate treatment for a number of acute and chronic medical conditions.

If you have any questions about it please feel free to contact me.

Take care,

Lisa

Rachel,

I'm really sorry to hear that this medicine caused you such bad side effects and that it's not going to be an option for you. I am glad that this isn't your "new norm" and that you seem to be doing a bit better off of it.

Thanks for keeping us posted.

Lisa

Hello,

Mine are usually quite purple - especially near the base of the nail. I'm guessing I have poor circulation to my extremities as my feet and hands are always cold.

Take care,

Lisa

Michelle,

Happy Birthday!! I think I saw this a bit late but I hope you had a wonderful day of celebration!

Thanks for all of your time and the effort you put into this forum, we appreciate you!

Take care,

Lisa

Rachel,

Thanks for sharing about your visit with Dr. Cohen. He sounds extremely smart and ready to help figure things out. I'm sure this is a difficult time of waiting and processing and wondering.

Thanks again for sharing and we look forward to your updates,

We're so glad you are a part of this forum!!

Lisa

Hello!

I just wanted to share the news that after 2 and 1/2 years of denials and appeals my case has finally been found "fully favorable." I just opened my mail and had to share the good news!

Thanks for all of your advice and support!

Lisa

Suzanne,

Thanks for sharing about your walking and the improvements you've seen! I forgot to mention that although exercise is very difficult at times I too have seen improvements ever since I started. I have fewer crashes and when I do crash it is not as long.

Lisa

Hello,

I think it makes sense that some of us are quite lightheaded when we are trying to get up. I experience this as well. I'm pretty sure that blood pressure drops while sleeping so getting up can be challenging.

I have to take my dose of Midodrine about 20 minutes before getting up. After I take it I prop myself up with pillows and begin to adjust to more of an upright posture.

Hope you have a good day!

Lisa

Hello,

My dr. recommended that I swim for exercise. It really is great - I feel much less symptomatic while in the pool than an exercise such as walking. I've slowly worked up over the past 2 years from 1 lap to 12 laps (12 laps takes me about 25 minutes). I mostly swim the backstroke as it's easier and I don't get dizzy from having to hold my breath.

As many others I have good days and bad when it comes to exercise. Some days exercise is a lot harder than others and some days it's not even an option (I'm too weak).

As another person mentioned the recumbent exercise bicycle is my other option because you're almost laying down.

I've been impressed by all of the responses by people who exercise intensely and frequently, wow!

Take care,

Lisa

Happy Birthday Willows!!

Lisa

Happy Birthday!! I hope you have a wonderful time celebrating!!

Lisa

Hello!

I recently talked with Dr Grubb about pregnancy. When my husband and i decide to try to have children he wants to "team up" with a high risk OB here where I live because of my POTS. On the other hand he is very confident that I will be able to have children safely. (He says that many of his patients actually feel better during pregnancy)

Take care,

Lisa

Melissa,

I'm SO glad to hear that you are home! Like others have said this sounds extremely painful!!! Thanks so much for keeping us posted. My husband and I will continue to pray for you.

Love,

Lisa

Becky,

Hello! Thanks for the update, it's good to see you again. =) First of all congratulations on your engagement...that's wonderful news!!

That's great that your POTS is gone or in hiding, what a blessing! I don't know anything about labrynthitis so I'll let others hopefully help with those questions.

I hope you have a great week and thanks for the update on what you've been up to.

Lisa

Dawn,

Happy Birthday!! I hope you have a wonderful day!!

Lisa

Ernie,

Thanks for sharing this good news! I hope and pray that you have a smooth trip and that most of all the research/tests will be able to bring you improvement.

Thanks for letting us know and we look forward to hearing about your trip/experience.

Take care,

Lisa

Melissa,

Thanks so much for sharing with us from your heart and for sharing truthfully. We love and appreciate you so much! Your perseverance and joy are such an example to us all and those are just 2 of your many wonderful qualities! My husband and I will be praying for you diligently.

Love you sweet Melissa!

Lisa

Maxine,

Thanks for sharing these wonderful pictures!! Mackenzie is SOOO cute!!

Lisa

Amy,

Happy Birthday!! That's wonderful that you were able to go out for your B'day!

Take care,

Lisa

Hope you have a wonderful Birthday!!!

Lisa

Tobel,

Hello!! I just wanted to say Welcome to the forum!! It sounds like you've had a rough time with dr's who don't understand what your body is going through. Most of us have had to go to numerous dr's before finding one who understands - but in the end it's worth it.

Welcome and I hope we can be of help and encouragement to you!

Lisa