KarenLorrel

Hi Patti, I think they are in the process resheduling. My daughter and I were just rescheduled. How this news gives you hope! Karen

I appreciate the standards you set. This is the reason I feel comfortable referring doctors, as well as, other people to this site. It is a site full of interesting research and updated information. The doctors I have referred to this site think the information has helped them. Thank you for keeping our discussion forum 'focused.' You are so right about what unites us....it was a very lonely place to be before I 'met' many of you. This site is such a blessing to so many people with this type of dysautonomia. Thank you, Karen

I am glad to read your experiences with abdominal pooling. I have had pooling in the legs and arms but now the abdominal area! My family doctor wrote a prescription for a 'belly binder' which ties up like a corset around the abdominal area. I have not picked it up used it yet. Have you tried this type?

Adrian, Michigan!

Hi Janine, My daughter is at the School of Medicine at Duke...could you tell me the name of the doctor that understands POTS. I would appreciate knowing so she can make contact. She won't except it but she has many of the symptoms and is heading for a crash. FYI....(We donated Dr. Grubb's book to the medical library.) I hope you find some answers and this doctor can help you. Karen

[color=blue] Hi -Steph, Thank you for sharing information on Dr. Grubb. I have been aware of his situation and I have been very patient...and prayerful. I would never get upset about Dr. Grubb not being able to see me due to such circumstances. I have too much respect and gratitude towards him to be more concerned about myself. My family doctor is a friend of his and she was asking when I would be seeing him again. I was wondering if rescheduling had started although I did not want to call the office. I thought the forum would be a less intrusive way to find out. I am sure his office has had a lot to deal with so asking on the forum seem to make sense. I have been very sick, unable to work much and will have to leave my job, and yet I have not called his office knowing what he is going through. My daughter is also struggling and I am concerned about her so, I was hoping to hear that maybe some people are being rescheduled. I certainly did not mean to sound impatient...because I am more concerned with him than myself. [/color][/code I was hoping to hear that rescheduling had begun, but my daughter and I will wait and we wil try suggestion made by other doctors. It will be great to see him again and get his help. But for now...I pray for his recovery...updating me with information is appreciated....as far as appealing for patience...I can wait for as long as it takes him to heal..and more. Karen

Hi...I had an early April appointment with Dr. Grubb and it was cancelled and the message left was 'will call you and reschedule." Has anyone had an appointment cancelled and, if so, have you had a rescheduling call? I am trying to 'hold on' but I need his input. I called and they said that they have 450 to reschedule....anyone rescheduled? Karen

FYI I took Provigil about 3 years ago and it was effective but I did get a 'tunnel vision' feeling. I would have continued but I thought something else might work better so my doctor and I tried other treatments. I think it has some merit and may work for some. Karen

Hi Julie, I have been on Cerefolin for about 9 months and am doing very well on it. I went thru a period when it gave me a mild headache, however I cut it in half and then slowly went back to full tablet. It is a prescription 'food supplement.' Dr. grubb explained that it was predigested folic acid combined with some B's so the it can easly absorb into the brain. I found it helped me to focus and feel gnerally better. I hope it help you too! You sound like you are doing much better. I have not posted for a while so it was good to read that you are doing better. You might know the answer to my question. I have an appt with Dr. Grubb the first week in April and I had a call left on my answering message that cancelled my appointment and said they would call back and reschedule. I havent' heard back. Have you heard of this happening to others? K <{POST_SNAPBACK}>

Gena...answer to your question. Dr. Grubb didn't do the genetic testing for EDS with me. He did an extensive examination...using the Breighton 9 point scale. He also left me sitting with my legs handing off the exam table for a long time. When he came back he asked if my legs always turned blue...or mottled and I said yes..thinking it was 'normal.' He then took my blood pressure sitting and then standing. (He had taken it before while sitting and my legs support by the floor) After this he diagnosis Hyperjoint Mobility Syndrome, although he alternates using the terms EDS and Hyperjoint Mobility Syndrome, he believes all the EDS categories should be called Hyperjoint Mobility Syndrome. He explained that is a genetic connective tissue conditon and that is causes my POTS which causes the chronic fatigue. This is not true in every person with POTS...it is what is causing mine. Hope this answered your question. Karen:)

Hi Gena, I didn't 'pass' a tilt table test and that was my question to Dr. Grubb and Dr. Abdallah. Both said that it was possible to show a negative Tilt Table Test. Dr. Grubb explain that it was important to watch how the BP changes DURING the tilted table test. (He explained it in much more detail but it was over my head). I spoke with Dr. Abdallah after his 'talk' at the DYNAKIDS summer camp and asked him about the TTT and he said..."10-13% of the patients with POTS do not pass the Tilt Table Test." Have you been checked for Ehlers-Danlos Syndrome, in addition, to the POTS? Take care!! Karen

I was told that he had emergency surgery... he would be out a several weeks...they are rescheduling his patients and that he will be 'back in the saddle' again soon.

I just read the topic started by Julie regarding antibiotics...sorry for repeat.

I just read your responses...I just posted asking about antibiotics...should have read these first...shows you how rotten I feel right now. These responses were helpful..Karen