DawnA

You sure are an ambitious person!!! You push your self to the limits and beyond! Little person-Big attitude thats our mighty mouse. Wow you go for it!! I know you will achieve what you have set out to do what ever it takes. Dawn Anich

Time and more time will help your fears. This illness takes getting used to. I had a lot of fears in the begining. Push yourself a little and you will be surprised and relieved that nothing happened. The more you do it the easier it gets. But if you just can not bring yourself to go to your moms it is OK. You need to give yourself more time to adjust to this disease. Take small steps..too much stress and anxiety just makes us worse...then our anxiety gets worse just a viscious cycle...... Dawn Anich

Sleep, eat, read, watch movies, pottery, bike ride, play with children or my dog....sleep some more

Thanks for the suggestion. My doctor keeps checking my thyroid and it always comes back normal. I also have symptoms of hypoparathyroism but it comes back abnormal also. Dawn

Im back...it is nice that I am able support my daughter and understand what is going on with her. My oldest daughter was sent to the social worker at school because the teacher thought she was depressed and also thought she had attention deficit diorder. I knew something was not right but she could not describe her symptoms very well. Four years later she was diagnosed with POTS. If it was not for me getting sick she probably still would not have a diagnosis. I can handle my self being sick, but not my kids! dawn Anich

This is very interesting. i was wondering about IV access for those who do it at home. I ask my Dr if I could have IVs at home and she said no because insurance would not cover it. I am feeling good right now...but their are times that I would be so much more functional if I could have saline on a regular basis. I am hoping the dr I am seeing in Boston will push for this. Dawn ANich

THanks everyone for the kind thoughts and words. THomas you hit it on the head with the mito disorder. That is what my PCP and I think I have. My muscle biopsy came back abnormal, but not enough to yield a diagnosis of a mito disorder. Dr Whiteman a Mayo clinic found abnormal labs pointing towards mitochondrial dysfuntion, but felt my mito problem was secondary to an autoimmune disease. After seeing a rheumy ...this is not the case. Dr Whiteman is no longer at Mayo. The mito Dr near me does not know her stuff and insisted I had a conversion disorder. This was proved wrong by another Dr...a lot of feathers were ruffled over my case between Drs. I no longer feel comfortable with. I do feel fortunate however because I am going to see Dr Korson in Boston who is one of the leading specialists for mito. I am hoping he can give my Dr support in treating me and in due time see my children. It gives me hope to know that my daughters will be able to have children without passing on the mito defect. Gotta go pick up my daughter. Dawn

I have not posted much this past year. I have been to busy trying to feel well and manage my family. I have been really been struggling physically and emotionally. A few years ago my daughter Carissa 14 was diagnosed with POTS fortunately she is doing pretty good. My daughter Allison 10 has been diagnosed with Crohns and psychiatric problems which she has had since very young. She has displayed a lot of autonomic symptoms over the years. I have never pursued testing. Now she has all of the classic POTS symptoms with a 40 beat increase with poor mans tilt. Like her older sister was, she is a gymnast. She loves gymnastics and does not want to quit. Her sister had toquit. Aly has so many good friends on the team and loves to be active. I am hoping that she can continue to go at least for a few years with treatment. It is YMCA gymnastice and not very competitive. She has suffered enough in her short life especially with her psychiatric problems. This just breaks my heart. I remember when I was going through testing for MS and how many people told me I was so lucky that I did not have MS. Their intentions were good but the comment always upset me.. i really wanted an answer. Now I would give anything to have the MS diagnosis. Instead I have a heriditary metabolic illness that has killed two of my aunts and grandmother while in their fifties. Now I am waiting for another aunt who weighs 70 lbs and my mother to die. They are both very ill. Onset seems to be coming at a younger ages as the generations pass. What does this mean for my daughters??? The unknown is the hard part> Should they have children??will their children have this in infancy! It makes me so sad to see my children suffer and struggle. It would help if their were doctors available who know what they are doing...but their are very few. The one I saw at Mayo just quit so I will be traveling to Boston in January. For those of you who pray, please keep us in your thoughts and prayers. Dawn ANich

I think a regular tilt test would have been too boring...that had to dramatize it somehow!!! I have never watched hourse. I think I will have to give it a try. Dawn Anich

Hi I see my Dr every 3-4 months and sometimes in between for emergencies. She likes to keep an eye on me and watch my electrolytes. However, I do have metablic issues...pos mitochondrial myopathy. My oldest daughter 14 at the present is not even being seen for her POTS. Her symptoms are managed by diet and she is doing well. She hates Drs and I do not see the need for her to see a Dr on cont basis. It is difinitely a case by case thing. Dawn Anich

I was also diagnosed with conversion disorder for my abnormal gait. I accepted the diagnosis but found that my gait never got better. That is when I sought more medical help. It was later proven that it was caused by a medical condition. However their are still some medical Drs who bring up the Psychosomatic stuff. If Morgan does not get better and continues to have these episodes. Please search again for a medical basis. She may have to change Drs, because they get so focused on the psychological stuff. It may also be a good idea to hide this label from futhur Drs. I honestly do hope this is psychogenic in nature because when it is helped the results will be permanant unlike many medical issues. I hope Mogan has a good therapist to get her through this ...it is REAL whether medical or physical or a combination of both. Many blessings Dawn A

Statins can also cause problems with the mitochondria. Those who have mitochondrial disease act negatively to them. My mom was on them . She came down with extreme fatique and muscle weakness and her ammonia levels were high. The Dr took them off of them and her symptoms disappeared. I wont take them either. Omega 3 is supposed to work better than statins for high cholesteral. Dawn Anich

The high cost of liability insurance...I think has made the costs of masters level counseling go up. The going rate here in Milwaukee is $125.00 an hour. My insurance only covers 60%. My counselor is a christian counselor and she often makes deals regarding payment. She likes to see people finish therapy. Also, she has seen many people for free!! She has scratched many peoples bill out. She does this as a ministry. As you can guess she is pretty poor. Many people respect her and do a lot of things for her...but I worry about her not being able to keep her business going without much profit. Dawn Anich

Nina, I am sorry to hear that you having been having a rough time. I understand the difficulty in not being able to post because you do not feel good. Sending warm thought your way. take care, Dawn

Paige, Sorry to have missed you. I understand your struggles...been there before. I do not post much anymore, but felt touched by your post. You are definitely in my thoughts and prayers. God created you, which makes you worth while! People have missed you on this forum...your words, feelings are worthwhile. Hopefully you will be feeling worthwhile by the time you read this. Warm fuzzy thoughts Dawn Anich

Thanks for doing this. I have been waiting for Chad's post on Dr Low's supposably miracle drug. i am feeling desperate here. Dawn anich

I am sorry that the ER did not do anything for you. can't they even give you IV fluids? Last night I went to the ER and they gave me two bags of fluids per my request. It helped my symptoms a lot to get rehydrated. My body just could not seem to catch up. Honestly I have never had such a pleasant ER experience. Everyone was sooo nice. They listened to what I had to say and they were very interested in learning about my medical issues. Actually they had heard of POTS. A few years back I had a very bad experiance at this ER. I hope you can start feeling better soon. I love Hawaii...can blame you for wanting to go back. dawnA

Keep going guys it is great, made me laugh. What a great thing to give to others to read and show what we are going through. People get bored so easily with any medical information I give them. This is cute...hope to see it in the newletter with more additions. Dawn Anich

That is wonderful news Ernie. I am proud of you. dawn Anich

i don't know what to say. Tears of frustration well up in my eyes. This is awful, but beleivable. A psychiatrist could find something wrong with anyone. i would love to see a study on sane people going to a psychiatrist and what kinds of things they are diagnosed with. Go somewhere else and don't let them get a hold of any of those hospital records. Don't give up on looking for answers...someone will take you seriously. Take care DawnA

Hey I have the dissociative disorder diagnosis too! What a bunch of crap. Like others I have no memory left. When I am really bad their are periods of time I can not remember. When I am sleeping a lot I can not remember if I dreamed something or if it really happened. On really bad days I function on fumes, cause I have kids thank God they are older. I can no longer multitask and it is getting harder and harder for me to be active on this forum. I can not rememeber what I read to respond and I can not come up with the words. I am in a world of my own and it gets a little lonely at times. I am not like this when I am feeling well. I hope and pray that these problems disapate for your daughter. Yes she will be a better person for it. But I am sure you can think of much better ways to make her a good person. Have you tried any alternative meds. I strongly recommend omega 3 and coQ10. They helped me tremendously for a while, but I have a progressive metabolic disorder and am in an exasorbation. I know of others it has helped including both of my daughters. God bless, DawnAv

My heart goes out to you. I can totally relate! I am proud of you. It sounds like you are being proactive and heading in the right direction. The appartment sounds great. MichiganJan: Thanks so much for your reply. It gave me hope that my future social life and support system will improve. Dawn A

I ahve been labeled as depressed , anxiety disorder, panic disorder, conversion disorder, and bipolar. It is a pain to have all of this stuff in your medical records. Even with all of my dxs and some effective treatments proving everyone of these wrong, I have had Drs label me. On my Mayo trip I told the neurologist that I used to have panic like attacks before I was treated for POTS. He labeled me with panic disorder. URGHHHH!!!! So frustrating. Once you are labeled as crazy you are always crazy!!! I do have depression that is alleviated by Rx but the Drs make such a big deal out of it. It bothers me that so many of us are labeled with these things, just have to laugh it off and continue to try and prove the Drs wrong!!!! DawnA

Lot's of good advice here. I think you should give it a try. The hardest thing for me is walking or standing in line! I just went to Great America a few weeks ago and had a lot of fun. My POTS has been mild lately. I did some pretty tough roller coasters. I walked a little funny and had mild symptoms when I got off, but nothing major. The thing was not able to handle at all was the rides that spin. I rough a few out for my younger daughter. But could not do it. My older daughter with POTS was not able to do the rollercoasters last summer but can this summer! I si pay some for the triop the following week and required a lot of rest, but is was well worth it. Good luck! Have a good trip Dawn A

Hi Sophia, I am so sorry to hear about your loss. My thoughts are with you. As far as fatique an emotions go...we release hormones with different emotions. I think OUr body is extra sensitive to this and we do not regulate these hormonal surges well. I know the ANS is a mind body connection. They are finding such a mind body connection with any health problems. Not meaning that our illness is caused by the mind. But I think when we feel intense emotions it really affects us physialogically sp? and this affects how we feel. Take care of yourself! DawnA