DawnA

Thank you everyone for all the support,words of encouragement and advice in regards to MAYO. I have not made hotel reservations yet. I am waiting to hear from my friend this evening. She is not even a good friend, I was so touched by her generousity. I know her through a circle of friends at church and she was my daughters 1st grade teacher. She was so genuine. Even if she can not go I am touched by her generousity. There are some wonderful people in this world. SHe is a MAYO patient and goes up their for blood work. She previously had cancer. I do not think I will get in to see neurology at this appointment. I live close enough that I can travel back at a different time. The drive is only 5-6 hours. I am going to pick up a book on crocheting. I have been trying to teach my self to crochet. Maybe I will make a crooked scarf as a soveigner of my trip to OZ. Dawn

If he has only supervised visitation, there is no way he will get the kids!! However, you do not need this stress. He is just insecure and feels inadequate...he wants you to feel inadequate too. Don't let him win. My thoughts and prayers are with you. DawnA

I can not believe I am going in only two days!! Thanks for counting Tearose. I have been in a crash lately. My husband is a little concerned about my going alone. i will manage. However, I have a friend who insists on going with me, if she can make a few schedule adjustments. It will be female bonding in the land of OZ. I am hoping to get a referral to see Dr Low. My POTS symptoms have become much worse the past four months. The medications just are not working anymore. Dawn

Wow this is one of the longest threads I have seen. I am happy you found the answer. Pooh pooh to that ER Dr. I think the only way they will say you are distressed is if you code. That is the only patients they seem to care to tend too. If you are not dying, don't bother me attitude. Makes me mad. Keep us posted. You are in my thoughts and prayers. Dawn

He sounds lide a gem. I ahve never had a Dr explain to me why I have the symptoms that I do. I am happy for you. Dawn A

Sorry that you and your friend are going through this. I wish there was more I could say. Take care, Dawn A

Julie, The Docter that I saw for SSDI gave me one of the most thourough exams that I have ever have. In his report he did not miss anything and found things other neurologists had missed. This Dr has a private practice too. They usually do more than work for SSDI, if this makes you feel any better. I hope you have as good of luck as me. Before I went to my appoinment I made sure to overextend myself, so I was in bad shape. It did not take much to do this. Best Wishes, Dawn A

You have received excellent advice. I just want to validate this! I went to a conference on ADD/ADHD. THe Dr was big on alternative treatment methods. He could not say enough about omega 3 fatty acids and its benifits. He also talked about avoiding MSG and food dyes. I wish I could remember more for you! Dawn

Thanks Nina, Ernie and tearose. I am kind of looking forward to my trip to MYO by myself. I always wanted to go on a trip alone, but I was planning on something other than Mayo. I am packing up and leaving...no meals for hubby and the kids. I have not been up to making very many meals. When I feel well I love to cook and make extras for the freezer. Well we have used up all of the freezer meals. SO I guess my family will live on sandwiches and pizza. They will be fine. I do not think I will be up there very long. If he wants me to see another specialist and I have to wait a while, I will come home and go back when I have to. I am hoping to be referred to Dr John Schoeffner in Atlanta, georgia for a fresh muscle biopsy. I had a frozen one done which was abnormal, but did not yield enough information. Off to bed I go. I am tired after getting out today. Dawn A

Hi everyone! Time flies, I can not believe that I am going to Mayo in only five days...I leave next Wed. My husband was going to go with me, but I decided that I wanted him to stay home with the kids. So I am taking a greyhound bus, the trip is around seven hours. i am a little nervous, because I have been feeling poorly and my brain fog gets bad. Also there are a lot of shady people at the bus station. The seats recline, so if I have a pillow and a blanket I will be fine. Wish me luck. Dawn A

I did a lot more than get my butt up and crawl across the floor. I went to the mall with my husband. I found many places to sit and it took all I had to walk. I often felt like crying, but I did it. I actually feel a little better. Neurogenic, meaning neuropathy can cause POTS. I have the diagnosis of autonomic neuropathy and POTS and so does my daughter. As far as metabolic myopathy, mito falls into this category and most of the mito patients I know have autonomic problems. Metabolic myopathy is pretty rare and probably not something you need to be concerned about. Neuropathy is more common. I am looking furthur into the cause of my POTS, because I have multisystem involvment. Having answers may not help me much, but for genetic reasons it is very important to me. I just had two aunts die from what I believe to be mito. My grandmother died at 47 and my mother is doing poorly at 67. Both of my children have many medical issues. I always wondered why? I breastfeed and we have always lived a healthy lifestyle. Now I know it is genitic. I worry about my children having children with infantile onset, which is fatal. I won't be at peace until I know I have pursued this furthur. I am looking forward to the day I have exhausted all possibilities. i am so ready to just concentrate on just trying to deal with my limitations and enjoy life to the fullest. I guess I should just look at this as an adventure of trying to find my way through this medical maze. I hope I don't run into many more road blocks or difficult medical personnel on the way. Dawn A

Also I was thinking of another thing. Why are so many of us exercise intolerant. I am unable to do any anarobic exercise (weights, stairs) without paying for it majorly. I try and stay active,but it does not take much to set me back. It is so hard to balance the activity rest. Right now I am in a slump and feel that I have not pushed myself enough lately and this has made me worse. Dawn A

Tearose, I think that is a good question!! Also , what is causing the POTS is where the answer may lie. I was reading on metabolic myopathies last night. It stated that muscle wasting was more common in nerogenic diseases meaning neuropathy. I thought that was interesting. I have evidence of a metabloic myopathy. Hoping to get meor answers soon. Dawn

I thought I would post a list of things that cause muscle atrophy. I was interested in finding out. THey said the biggest cause is disuse. Even minor muscle atrophy usually results in some loss of mobility or power. Common Causes: some atrophy that occurs normally with aging cerebrovascular accident (stroke) spinal cord injury peripheral nerve injury (peripheral neuropathy) other injury prolonged immobilization osteoarthritis rheumatoid arthritis prolonged corticosteroid therapy diabetes (diabetic neuropathy) burns poliomyelitis amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) Guillain-Barre syndrome muscular dystrophy myotonia congenita myotonic dystrophy myopathy Hmmm is florinif a corticosteroid? Could it cause atrophy? A lot of us take it. Dawn

I do not think muscle wasting is a part of dysautonomia unless it is caused by severe deconditioning. The gauge thing that your neurologist used is probably a dynamometer. It just tests hand strength. Do you have neuropathy? Distal weakness is common in neuropathy. But it also sounds like you have proximal weakness. Do you have difficulty with walking? It sounds like you may have something neuromuscular going on. I am sure you already know that. It will be interesting to see what Mayo says next year. But maybe you will be doing better and not have to go!!! Wouldnt that be nice. Dawn A

I was given oxygen in an ambulance, but i was also given and IV. I think it was the IV that help more so that the oxygen. I never have had low O2 sats. So I dondt think hpoxia is my issue. I wonder about CO2 however. Sometimes at night I have a hard time talking and breathing if I have done a lot that day. I think my diaphragm gets week . Sometimes it tremors. Do others get this?

I had to do the methacoline challange! That is were they use methacoline to induce asthma symptoms. This can be uncomfortable if you have asthma, then you get albuterol to treat it, which can make your heart race. If the Dr is looking for asthma, you will probably have to go through this. I have breathing isssues that I feel are not related to asthma. I think we have trouble breathing, because our body is in a state of shock from low blood volume, probably other factors included. Good luck today! You will be OK. Dawn

I know shat you are going through. Iam feeling awful lately ,because I can't stay hydrated due to the nights sweats. My night sweats come and go I have not figured out a cycle yet. I was tested for premedapause and this started long before SSRIs. dawn

Angela, As you can read from other posts your actions are very common. I have hidden behind many pillars myself. As Kristian put it, you are in a grieving process. You have soo much to grieve about. It is a process and we all go through it differently. I would say more but I need to get ready for church, Dawn

That is great that you are getting in to see the endo so soon. I am glad that your psychiatrist was concerned about your medical symptoms. Now that is a change! Keep us posted. Happy Holidays, Dawn

Paige, it is nice to hear from you. I am glad you are doing OK. I go through periods of time were I am not up to posting either. happy Holidays Dawn

bump! Paige, wondering how you are doing! Thinking of you! Dawn

Everyone has given you very good advice. Skip seeing the neuropsych person! I was told I walked funny because of childhood trauma and I actually believed it . I ended up having a neuromuscular disease. Don't go down that path. Iam glad your parents are backing you up. Your panic attacks are probably caused from the autonomic problem. I was hyperventilating all the time until I was treated for POTS with a beta-blocker. What kind of meds do they have you on to treat the NCS? By the way welcome to the forum. Dawn

I like that! Especially the thing about going to the mall. New clothes always make me feel better. Dawn

WOW Nina, you have a lot going on back there. I hope this does not interfere too much with your trip. Hopefully the pain will be minimal. Have a wonderful trip. Dawn