gelann

My daughter just moved to Colorado Springs, Co this past week. Her insurance wont start until Sept. 1 but I was wondering if anyone has any suggestions for doctors to understand POTS in this area that they would recommend? Also a gynecologist because she hopes to start a family after they get settled. Usually she actually feels better there because of the high altitude.

My daughter who has been diagnosed with dysautonomia was having problems keeping any food down.

She was constantly vomiting and gaining weight. She is now following a gluten free diet and has lost weight and is keeping food down.

She always wonders why none of the doctors suggested that she try a gluten free diet. She has stopped vomiting and no longer takes domperidone which was to help her stomach move the food more quickly.

I was wondering if anyone could recommend a family physician and/or POTS physician in the area. My daughter will be moving there in August after she gets married and I am concerned if she can find a doctor who understands the autonomic issues. Thank you, Gelann

Hi,

I went and seen an allergist, due to hives that I have gotten since I first got sick. I had been reading a little about the mast cell activation, and on another post found one more thing that applies to me. I really haven't had time to learn all there is about pots, let alone the mast cell activation. But thought it was worth mentioning. When I went in to be seen first a resident came in and talked to me, and I struggled to explain my story, and all the different reactions to medications I've had. It is very hard for me to even talk to drs., because I have had so many bad experiences with them, and I get confused easy and dont comunicate well. So after struggling to explain everything I told her I had a story I had written out because I forget too much. So she went out and talked to the regular Dr, and when they came in he didn't even introduce himself. He didn't even get the door closed, and he was already giving me a lecture about how You can give someone too much information, and they are only human too, And it takes too much time. This lecture went on, and everytime I tried to say something I was ran over. (I guess he figured I didn't deserve any more of his time.) I had a rash (amazingly) probably because the resident had scratched my arm, and that will often start my itching and hives. I showed it to him, and on to a new lecture about how itching will cause that. That the more I scratch the more that will happen. He said something about the mast cell thing that I had mentioned to the resident. He said he would check me for it even though he didn't think I had it. At this point I was already fighting back tears, and just wanted to run from the office all the way home. I was barely hearing anything he had said, and was just hoping it would be over with. He then asked me to see the pictures I had brought. I showed him the bruising on my spine. The blisters that turn into scabs, and then last the rash I get before I scratch. I don't know why but that seemed to intrest him very much. He asked if I had had it biopsied by a dermatologist, and I said no. He ordered the blood work, and some 24 hour urines. I said goodbye to the resident, and went and did my blood and urine. All the time fighting back the tears. Maybe it wouldn't have been so bad for me, but I have been treated like a child so many times by drs. and it brought back horrible memories. My husband was very upset because he knows I am usually a very strong person, and don't let other people bother me. I couldn't stop the tears anymore from rolling down my face, and finally went to the bathroom, and cried my eyes out. I have more appointments in a couple of weeks, but just don't think I can do this anymore more. I just can't take feeling like a lesser person just so a dr can have his moment of fame. I am probably just going to cancel my tests, and my appointments. I guess I am just a lesser person, because I can't keep overcoming this. It is just too depressing. I also asked if sensitivities to medications can be part of pots, and he just said no and looked at me like I was and idiot. Anyways. This is my boo hoo-ing story. Thank you for just letting me let it out.

Suzy

I have been reading information on Celiac disease which is gluten sensitvity. Here is a passage of one of the websites. My daughter is avoiding all wheat to see if she feels better.

http://www.suite101.com/blog/daisyelaine/g...ity_enteropathy

Diagnosing celiac disease is difficult. The usual approach is to order tests for gliadin and tissue transglutaminase (formerly known as endomysial) antibodies and serum IgA levels. However, many physicians fail to order tests for serum IgA levels. Because patients with gluten sensitivity often have low immunoglobulin levels, various antibody tests for IgA autoantibodies will be negative. For this reason, the presence of IgG gliadin antibodies alone in someone with a low IgA level (less than 10) should be referred to a gastroenterologist for further evaluation including intestinal biopsy if indicated. On biopsy, intestinal changes are often seen in people with gluten sensitivity, even when symptoms are mild. The ultimate confirmation for gluten sensitivity, however, is the absence of symptoms after following a gluten-free diet.

I just thought I would pass on this link to a newscast that was shown on WLS-TV in the Chicago area.

I live in Michigan but someone in my family saw this and thought the symptoms sounded familiar. Dr. Grubb is also mentioned as one of the top doctors in this field.

http://abclocal.go.com/wls/story?section=n...&id=6505198

Gelann

I was just wondering if this has happened to anyone else. My daughter saw Dr. Grubb recently and we received the bill for the office visit and it was a double charge like we had two visits.

It was est level 5 visit and prolonged care visit. I called they did not have the notes from the visit but I was told that he can charge more for addtional care. The visit was about an hour. The first time we saw him, it was about an hour but we didnt get charged extra.

Last time we got an extra bill from the hospital. She was not sure if I would get one now because he was at the Perrysburg office.

Just wondering if anyone else has had this or should we call and question more?

Thanks, Gelann

Goodluck Amber, I hope it works out for you the way you want.

My daughters visit with Dr. Grubb was about $200 but there were also hospital charges for the visit which were about $500.00. Total $700 which we had to pay $200 out of pocket.

Hi Randi,

My daughter also get huge temperature variations. She can go from 91 to 103 in a very short time. Dr. Grubb told us that the temperature issue is less common than the other issue with POTS. Her autonomic nervous system is affected more than just blood pressure drops. Her main issue are the passing out, digestive problems and temperature control.

We were pleased when we finally understood what was going on. Doctors looked for infections when her temperature issues started.

Good luck to your daugher.

Gelann

I know this topic has been posted before--but, Chrissy's been feeling really crappy lately and now her temp. (armpit) has gone as low as 92.8. I don't know if the thermometer is wacko or what. Her normal temp. is around 96-97. She said she feels really warm on her entire body, except her feet (which are always cold). When I feel her head, she doesn't feel warm, or cold for that matter!! I can usually tell if one of the kids has a fever by touch. She has vertigo right now, burning eyes, diarrhea, and what the Dr. thinks is Vasomotor Rhinitis.

Any ideas on what the deal could be on this really low temp.?

Patti

Hi Patti, I just want to mention that my daughter Angela,25, has these huge temperature regulation problems. She can go from 93 to 103 occasionally within a very short time. This is all part of the autonomic disregulation. Her temperature problems started back in 1999 and the doctors kept looking for infections. No one understood what was going on until she started passing out a few years ago. At least we know what it is now. When the temperature is low, we try to warm her up with lots of blankets and when it is high she will put on her ice vest from Coolsport. It does help. We now understand from Dr. Grubb that this is one of the less common problems with dysautonomia. They did put her on pindolol to try to help control the temperature fluctuations. They occur less often.

I hope she feels better. Gelann

I am looking for some type of cool suit or cool jacket. -- what I mean is that I am looking for something to wear that will keep my body cool when I am outside in hot weather. I had heard that they make some type of jacket that keeps you cool. Please help. Thanks. Shane

My daughter also has a vest from cool sport. They are adjustable and work great. She would love to get a head scarf but they are always out of stock.

Hello everyone,

I was wondering if anyone has ever had a test for IGM.(blood work)my daughter is the patient who has been diagnosed with POTS/dysautonomia. She recently had blood work done and was informed it was very high. They retested her weeks later and it was still high. Years ago when her "symptoms" started and was not diagnosed I remember one of the tests for blood work came back high in the IGM test.

The dr. only said that it is a sign of infection. That was the only thing he said. Has anyone else ever had this happen? If so, did you get an explanation?

Thanks, Gelann

Hi Christina,

I just wanted to mention that my daughter sees Dr. Felix Rogers in Trenton, MI. He is a cardiologist and has helped her quite a bit. He also put her on midodrine but it helps her. Good luck to you.

I just wanted everyone to know that my daughter who contracted the whooping cough at work (A HOSPITAL!)

was vaccinated for pertussis and still caught it.

There is a new booster vaccine for adults which we have just learned about. She was a new employee at the hospital and her blood tests were tested to see that she was up to date on all vaccines. But it still happened!

If you read about whooping cough which I have read so much on it in the last few months. Most adults do not even realize they have whooping cough. In a health adult is is often misdiagnosed as bronchitis as was hers by three different doctors. Her first blood test also came back negative and then the specialist (pulmonary dr.) retested her for whooping cough and confirmed it. Unfortunately with her dysautonomia is is taking an extremely long time to recover.

Maxine,

I just wanted to say that my daughter who has autonomic problems contacted whooping cough back in November. It started out as a bad cold then the doctors thought it was bronchitis. The coughing got so bad that she passes out. She finally was diagnosed with whooping cough. It has been over three months and has been unable to work and is still passing out when the coughing gets really bad.

Her POTS passing out was under control before the whooping cough. So be sure to get onto antibiotics as soon as possible. The pulmonologist said it would be a few months more due to her other problems.

I wish you well.

My daughter who has autonomic issues has a new problem. About the first week of November a cough started and naturally she thought it was a cold. Antibiotics haven't helped. They tested her for whopping cough and Asthma --both negative. She is 25.

Has anyone had this problem? The coughing is so forceful that she passes out. Her passing out was under control with midodrine. She recently started a new job and she has missed the last month due to this cough. Now she is worried if she will have a job or insurance since she is still in the probation period.

Any suggestions would be appreciated.

Gelann

I hope your appointment with Dr. Grubb went well and hopefully feeling better.

My daughters fevers which started in 1999 her junior year of high school have gone as high as 106.5.

Even at that time she would have some low temps 97, 96 which we didn't think was strange but looking back on the records that we kept we now understand what was going on the ANS dysfuntion. She still gets temp. fluctuations. She can go anywhere from 93 to 103 in a short time span. Dr. Grubb has tried cymbalta which did seem to help the fevers but gave her awful tremors and when she stopped we noticed she had more fevers. She is now on a low dose of wellbutrin and she hasnt had too many fevers.

My best to you and hope they figure it out!

Gelann

I am sorry to hear you have so many fevers as of late .

I just wanted to mention that my daughters has had fevers of unknown origin for many years until they diagnosed her an autonomic nervous system that does not work properly. Dr. Grubb told us that this is one of the symptoms (problems) that is not as common as all the rest under the dysautonomia catagory. Tylenol and other meds dont seem to help. We just try to cool her body off. Ice vest, popsicles, cold wash cloths. This may not be anything in relation to you but I just thought I would pass it on. Doctors were puzzled for years, test after test.

I wish you well.

Just wondering if anyone else in the Detroit Metro area is being seen by a primary physican who understands this condition. My daughter will be on her own insurance HAP and will be looking for a primary care doctor who understands. Thank you for any suggestions.

Gelann

Lindajoy,

My daughter has low B12. The lab who does her blood work has a notation on the result sheet stating that some people might have symptoms of neurological problems if the level drops lower than 400. The dr. explained that some labs consider over 250 normal. She now gets B12 injections monthly. Tablets did not work for her as they were not absorbed properly by her stomach.

Good luck to you.

Gelann

My daughter recently went off cymbalta. She was on 60 mg a day. So in order to go off of it she decreased her dosage to 40 mg for one week and then 20 mg for another week. The following week she took one every other day for a week.

She had no problems coming off of it and she feeling better. Good luck to you.

Hi I was wondering if this has ever happened to anyone. My daughter who has pots and gastroparesis forgot to take her meds this morning before she went off to school (nursing school) she forgot because she had a final and came home a little while ago and she has felt fine all day. She normally takes domperidone, mestinon, prevacid,midodrine,pindolol. She takes cymbalta at night which she plans on going off because she has had terrible seisure like movements and tremors since she started this. Was it a fluke or maybe all the meds made her feel worse. She really feels like the only med that made an improvement was the midodrine.

Gelann

Hi, My daughter has been on mestinon for 3 weeks and has recently noticed that she is having memory loss. Has anyone else had this problem? She is also on cymbalta since December 06. She has been on midodrine for over a year.

I would appreciate any input. She is not sure if she should cut back on it. We called the dr. but havent heard back yet. Thanks Gelann

The temperature is part of the Autonomic System. My daughter has had these temperature problems for years. It used to be only high temps. Doctors were always looking for infections. Now at least we understand that it is the autonomic nervous system. Hers can go and did so on Friday from 90 to 102 in a few hours. She is now seeing Dr. Grubb who told us that the temperature problems are not as common as the other symptoms with POTS, etc. He has her on cymbalta. She started on 20 mg and is up to 60 mg and is trying to get adjusted. We hope it works!