DawnA

Dayna, I hope the vitamins supplements are helpful for you. I know they really helped Kristin. Alternative treatments also have made a significant difference in my health. The supplemant that has helped me the most is CO Q 10. It has even helped my gastroparesis. I truly beleive that Kristins Mom has the right approach concentrating on the mitochondria. I feel many of us have problems with our metabolism. If your body is able to metabolize to make more energy...this helps teh whole body. For instance increased motility. I am having a hard time getting out what I want to say. Anyway I hope this encourages you. Dawn A

I am glad to hear that you are doing so well. Congrats on the new house. I live in a trilevel haveing four levels with the basement. I would love to move to a anch someday. I have often wondered the same thing if I am ever good enough to go back to work. Don't be to hasty in going back to work. Make sure you are really up to it. However I do understand the need to bring in more money. Take care, DawnA

Emotionally having a diagnosis could be better for your daughter/daughters. She will have a little more understanding about what is going on with her body. It can be so frustrating when your mind does not focus well. She has you who understands and can relate My daughter was evaluated for depression/ attention deficit. She had neither. She starts high school this year. If she is not able to keep up or has problems with organization...the POTS may have to be brought up. However my daughter is proud and wants to be normal. I understand how difficult it is to remember things and not function. I am always loosing permission slips, forgeting lunch money, etc. Fortunately both of my daughters are pretty good at getting off to school on there own. If it was my responsibility they would be late all the time. I am sorry that you have to deal with social medicine ...I suppose you do not have much choice in Drs. Do have rights in your country for children with disabilities? Hang in there DawnA

Hi I have two daughters and the oldest is diagnosed with POTS. The youngest has the symptoms, but I have not had her go through testing. I agree about the waiting for a label until necessary. You have to think about what is in the best interest of your children. Will a diagnosis help them in there life at this point?It depends on the situation. I had my eldest tested when things got disabling. She improved on her own and does not need meds at this moment. I often have to encourage her to drink fluids and pace herself. The diagnosis has been helpful for her because my husband is not a very patient man. He does not understand forgetfulness and has often accuses her of being lazy. Now I just remind him that she has POTS, which he does not totally understand, but is getting better. Also when she had surgury they gave her extra fluids. School issues may be another benifit. My otehr daughter, I am reluctant to put her through the testing. She has had enough tests due to other illness' Since I have an undiagnosed metabolic disease. they treat both of my children using precautions. It looks like we probably have a mitochondrial disease and the only way to know for sure is to go to Atlanta for a fresh muscle biopsy. I have decided to put this off since my children and I are both beig treated like that is a possibility. My diagnosis would not change our treatment at this point. I will persue this in the future, but it is not a good time right now. I just want my children to feel as normal as possible and not be afraid of the future. Medical testing was very difficult emotionally for my oldest who is 14. I hope this information is helpful to you. Do not let that Dr tell you what to do. It is your decision. Only you knows what it best for you and your children. What ever you decide you have my support> DawnA

I use one for the sake of my children. There are places that I could not go to without the use of a chair. I use it when I am really bad or if there is a lot of walking. DawnA

Hi, I am sorry to hear you are having so many things going on. It sounds like the drs were too proud to call your ANS doc. Good luck Dwn A

How precious. Thanks for sharing the pics of your beautiful children. Enjoy! DawnA

Hi Ariella, Your best bet is to see a genetisist and a neurologist. It is best to find soemone knowledgeable about mitochondrial disorders. The only way to truley rule out mito is a fresh muscle biopsy. Most places freeze the biopsy and send it out for testing. I know of many patients, including myself who did not get enough information from the frozen biopsy. They were not diagnosed until they had a frsh biopsy. I recommend that you check out http://www.umdf.org/ . Look under information for patients and medical professionals. You will get a lot of information. I also recommend the support group Yahoo mitoldies. They can answer questons you may have. You will learn so much more from the patients than any of the drs. I hope this information is helpful. DawnA

Hi Danya, You have been given lots of great advice. I hope it works out for you. It is hard to find a Dr who knows much about ANS stuff. If she is not able to help you with your migraines, I know of an excellant neurologist who specializes in migraines. She is in Racine and is a very well liked Dr. You can not see her for the ANSproblems. She used to be my neurologist before she decided to specialze in migraines. When I was diagnosed with POTS she sent me to a cardiologist. If you need someone else for the POTS my cardiologist is one of the best in the US. She gave me more information and advice than any neurologist that I have seen. She also spends a lot of time with you. Take care, Dawn A

Thanks for sharing the pictures Jessica. Ethan sure has gotten big. It is good to hear you are doing well.I will pray for a good delivery and a healthy baby. Blessings, DawnA

Hi Welcome to the board. I am sorry to hear you are having such a hard time. The medical system can be very frustrating. Are you on fludrocortisone for your addisons? My friend with Addisons takes it daily. It also helps POTS. I take it and it has helped quite a bit. DawnA

When ever my gastroparesis acts up, I follow the BRAT diet also. One of my favorite things is chicken broth with noodles. Mashed potatoes and rice pudding are another favorite. Things to avoid are high fiber, fruits, veges and grains. They are hard to digest. Yet high fiber is supposed to be good for constipation which many of us suffer from. You just can't win! DawnA

I am a little slow in posting. I wanted to let you know that my dysautonomia has progressed in teh past three years. I was intially worried about shydrager. I know of others who were misdiagnosed with it. I hope this is your case. I am not on IV fluids, but have come close to it. Have they ruled out mitochondrial disease. I have many friends diagnosed with it who have dysautonomia,receive extra fluids and even on tpn. I have been diagnosed with a metabolic disorder, NOS. It is most likely a mitochondrial disease, but there is not enough evidence on my muscle biopsy to diagnose it yet. Welcome to the board! dawnA

DId you have your testing done at Froedert? My daughter and I were both tested there and diagnosed with autonomic neuropathy. I think they use this diagnosis when you fail the sweat test. I still consisder myself to have POTS and orthostatic hypotension diagnosed by my cardiologist after testing. At Froedert, I was told I had small fiber neuropathy and sent home on a beta-blocker, which did not help. I could not find any information on the internet and was soo confused. THen I ordered my test results, saw orthostatic tachycardia and found this web site. I used the information on here and was able to get better treatment elsewhere. I think autonomic neuropathy is an umbrella diagnosis. Dawn A

Wyoming is a nice and cool place to go. A motorhome home through Teton Nat'l Park and yellowstone sound good to me. Yes you can take your W/C on the airplane. You do not even have to check it in with your regular luggage. Like a stroller...you check it in at the gate. Dawn A

Julie, Sorry you are at your wits end and going through this. I agree with everyone else. Get rid of that attorney. IT is not the disease that makes people accepted. It is the level of disability...the symptom...the ability to function. Concentrate on this. Ill keep you in my thoughts and prayers. DawnA

Julie, Sorry you are at your wits end and going through this. I agree with everyone else. Get rid of that attorney. IT is not the disease that makes people accepted. It is the level of disability...the symptom...the ability to function. Concentrate on this. Ill keep you in my thoughts and prayers. DawnA

Wisconsin...not very exciting...born and raised here!! But my heart blongs out West. That is where I belong! DawnA

I took it and it did help with my mood...especially before my period. It was not a placebo affect! On the downside I had to stop taking it . After a couple of months I broke out in a rash and my joints swelled up. It went away when I stopped taking it, but came back when I started it back up. DawnA

Joyrose, Thanks for the information on Mestinon. I amy give it a try. Yes...I would rather eat spaggetti than feel llike it!!! DawnA

POTS is a syndrome( a group of symptoms) not a disease. THe POTS is caused by something. Whatever is causing the POTS is probably causing the other symptoms. Therefore whatever is going on is more thatn POTS and the symptoms are out of the POTS range. Dawn A

I have been tested for Myasthania several times also. All tests neg. The more that I do the weaker my muscles get. I start to walk funky and have footdrop. Also my eyes get droppy. I had a muscle biopsy which show some abnormalities with my mitochondria. Mitochondria are the power houses in our cell...they make energy. This is not enough information to diagnosis me with a primary mitochodrial disease. You can have mitochondrial abnormalities with other diseases such as lupus. They have not been able to fiqure out what I have . So far I am diagnosed with Metabolic disease, NOS. In order to know if my problems are caused from a primary mito disease, I would have to have a biopsy done fresh, which can only done in at a few hospitals. I am now taking CoQ10 and other supplements, which helps with energy production. This has helped me quite a bit with my symptoms...muscle, gastroparesis, fatique... You might want to give Co Q 10 a try if you have not already. Nature made is a good source, but even better is Q-gel from tishcon over the internet. I hope you can get some answers or relief. Dawn A

I hope things go good for Marissa, so she is able to Dance. My thoughts and prayers go out to her. Are you hooked up with the support forum for those with J-tube? I can get you the name of a good one if you are interested let me know. I just have to email a friend. Has your daughter ever been evaluated for Mitochondrial Disorder? I ahve friends with very similiar problems who have it. Maybe the mitochondrial cocktail would be of benifit to her. I am taking Co-Q10 and to my surprise it helped significantly with my dysmotility. Of course don't have her take anything without her Drs permision. Has she ever gone to Cleveland Clinic? I hear it is a wonderful place to go. Sending good thoughts your way. DawnA

I also fid that it is harder to walk in the morning as far as balnce goes. I get better balance wise as the day goes on, but my other problems kick in. My muscles get fatiqued and I no longer have muscle cooridination. I really feel the drunken gait walk is due to POTS. Since I have so many issues related to my gate and it varies so much, I have had too neurologists diagnosis it as a conversion reaction. THey say my gate is bizzaree and exaggerated and state their are many inconsistencies between my examines. with my examines. Meaning I had apositive Romberg for a long time and not it is negative.....I have tried to explain things but I am not convincing...so I give up. Funny thing is I have been diagnosed with POTS , neuropathy, myopathy and a metabolic disorder nos tha has to do with energy metabolism...but they still think I ahve a conversion reaction. One of the neurologists is from MAYo. I was shocked My PT says absolutely not, but they have there own opinion. Well if I have someone psuch me to my apointment in a W/C my gait will be normal and my balance will be off. Then they will be convinced that I am crazy. No use fighteng it after 3 years. Time to move on, but I am really afraid to go to another neudrologist. Iwill not be not show them my past medical records. I won't be that honest again. I won't let them know about the conversion diagnosis. sorry I got off on a rant. I am glad that my post gives you some peace of mind. Your waking is probably just from the POTS. DawnA

I have had the pain around my belly button after eating for a long time. I was diagnosed with Gastric dymotility. Has your sister been evaluated for that. I know of many with delayed gastric emptying who are on TPN. Fortunately mine is mild. I would think it would very hard to be a wife of a rabbi/minister with all of the social demands. I feel for you. Take care, Dawn A