DawnA

Hi Ernie! You are definitely not wasting the government s money!!! I have read your p0osts for the past two years and it sounds like something else is going on. It sounds metabolic to me. I ahd to fight to prove that my muscle weakness and ataxia were not a conversion reaction. I finally found a Dr who would listen to me. My first EMG was normal. I found out the person doing it can make a difference. They say it is an Art. My second EMG was abnormal. I just had a muscle biopsy which was abnormal in the mitochondria. It has been sent out for furthur analysis. I will hear in 3-4 months. If it was not for my children becoming ill and my daughters neurologist. I would of given up and takingthe dysautonomia diagnosis. You may have a deficiency somewhere that can be helped with a vitamin, mineral...Even if their is no fix you deserve an answer. Also, the more patients that push the Drs for answers. THe better future for others with these weird illnesses. We can't give up. We are not quiters! We are here to support you. Best Wishes, Dawn Anich

That's got to be the shortest case of bronchitis I ever heard of!!LOL

Sorry your are feeling so poorly, my heart goes out to you. Maybe you are on the wrong combination of meds. It took a long time to find the right ones for me. So frustrating. I know. Topral was awful for me. It made my HR and BP so low. I could not function. Hang in there. Dawn

That's terrible! You should of been with him!! I think many people who work in ER become so desensitized they loose there compassion. They should have compassion training!!! They should have studies on ER Drs and nurses. For some reason they seem to loose their common sense. I wonder why that is. Coughing is definitely an allergic reaction!!! How could bronchitis come on so quickly. That is ridiculous. My nephew almost died at two from poor judgement from the triage nurse. He had fallen and hit his head. He had projectile vomiting. When he went in he was screaming then he would pass out. He waited 40 minutes to be seen. Then the Drs gave his mom a hard time. Fortunately his pediatrician showed up and made them do a stat CT scan. HE had a hematoma so large, they were positive he would die. Everyone was crying. They gave him his last rites on flight for life to children's were he ahd surgery. It was a miracle, he survived and had no brain damage. Of course the ER was strongly reprimanded, even from the surgeon at Children's. Something is wrong. Something has got to change with the way so many ERs are run. Make sure you file a complaint. They need to know the public is not happy with their services. Let us know what his DR says about a allergic reaction! Take care, Dawn

I get this if I overdue myself. My electrolytes seem to be totally out of wack. Rest, salt and fluids are what help me. But too much rest can make me worse. Amy, your permanent weakness sound like more than POTS. Have you had an EMG. My first EMG was normal. I had another one by a different Dr. who was supposably better at it and it was abnormal...showing definite muscle disease. I was told the person performing it can make a difference and it definitely and art. Your muscle wasting definitely sound like muscle disease. I hope you can find a Dr to take this seriously. Tomorrow I get my results back from a muscle biopsy. I was told it probably would not yield much information. Yaay another test that comes back normal! It would be nice to get some answers, but that may not happen. Best Wishes, dawn a

I just receceived the CFIDS Chronicle and thier is an interesting article, "Joint Hypermobility with CFIDS". It was interesting. Here is a quote: " Hyremobility and the physical features and dysautonomia often associated with it, account for virtually all of the diagnostic features of CFIDS and also explain some of the other symptoms often associated with the illness." Again, all of this overlaps, makes everything very confusing and it is hard to know what is what. dawn

I know that POTS can be caused by many things. These include EDS, viral, MItochondrial myopathy, , chiari malformation and CFS. It is common for people with CFS to have orthostatic intolerance, but you can have orthostatic intolerance without CFS. So they do overlap. THis is how I understand it. Does this make it a little more clear. I too find the POTS symptoms to be the most debilitating. I have alot of medical problems. But I feel the worst when my POTS symptoms are bad. I really feel for those with bad cases of POTS. My heart goes out to them. I am fortunate, because mine has gotten more manageable. Dawn

Gayla you will be in my thoughts and prayers tomorrow. Good luck and hang in there. dawn a

You should show your husband these posts. It will help him to be more understanding. People who do not have this awful illness just do not understand. It is not there fault, but it can be so frustrating. I went on trip with my family and my husband just could not understand why I felt so lousey when all I did was sleep in the car. I am going to have him read this. Best wishes, Dawn

I am very happy for you. Thank you for sharing this good news with us. dawn A

The first time I tried florinif it did not make much of a difference. I decided to try it again a couple of months ago. It has been doing wonders. i have not been this functional in years. Godd luck I hope it works for you. Dawn A

I was initially diagnosed with CFS? fibr and POTS. Now they feel I have a mitochondrial disease. I have also had the flu-like symptoms of CFS. many of these illness' overlap and seem to somehow be related. It is hard to differentiate what is what. Like Nina I also feel old like 80. I push myself to keep going too. Inactivitie makes things worse. It also makes me depressed. I often get 2-3 day crashes if I overdue myself. Then I do nothing but sleep. It is so hard to get myself back to how I was before. It is hard to find taht happy medium

Dawn Anich 37 Dx: POTS , Orthostatic hypotension, gastroparesis, unknown neuromusculat diasese possible mitochondrial myopathy age of diagnosis: 35 SE Wisconsin At worst I have sleep 18 -20 hrs a day, which I call crashes. ...Tachycardia, heaviness, numbness and tingling , brain fog, blurred vision, tremor, exercise intolerane, cold or heat intolerence, chills, aches and pains, headaches, nausea, inability to eat, weight loss, poor balance, ataxia, poor coordination, moodiness, depression anxiety, muscle weakness, presyncope..blackouts major fatique At best I have exercise intolerence, easy muscle fatigue, mild headaches, walk up to a mile then loose muscle control, mild fatique. Some difficulty with standing I have tried many beta blockers, midodrine, clonazepan.... I take nadolol, florinif, wellbutrin and effexor.

Migraine, I hope Olivia outgrows the fevers, poor thing. It is hard to see your little one always feeling poorly. It is great that you are feeling better with this pregnacy. I hope it continues. I was sick with both of my pregnacys, which where girls!!! Briarose, I ment to put your name, not migraine regarding being a single mom. I am sure you figured it out. I am terrible with names!!! Take care, Dawn

Thanks futurehope for postig the article. I am not able to get to the computer much these days. Paige, I can not believe what you are going through. I thought I would have to claim disability on a mental health issue, but I did not. After becoming sick mental health issues started to come forward, like you said, who sould'nt be depressed. But I had problems that were not related to the POTS! After becoming sick I felt so child-like that my traumatic childhood and memories started to affect me. This was all documented in my paper work. I feel fortunate that they did not take this approach. I was giving SSDI based on a mylenopathy that caused significant coordination problems. They sent me to see one of their neurologists and he was great. Now they are finding it is not a mylenopathy but a neuromuscular problem. It is so outrageous that they always want jump the gun on the psychological issues. Once it is in your charts many proffesional seem to perseverate on it. I went to see a female gynocologist for an ovarian cyst. She brought up my depression/anxiety (which is no longer an issue). I felt like she was talking to me as if I was an inferior being. She was so condescending. Is this depression junk going to follow us forever? I wish you the best of luck! Like Nina said do not give up. And send them some good articles. Dawn

Oh my, migraine !!It sounds like you have your hands full. I hope you have a supportive family. I don't know how yuo do it as a sick mom. That must not be easy. Dawn

Migraine, your daughter sounds very similar to mine when she was a baby. How old is she now? My daughter Carissa, who is 13 now , was sick nonstop from six months to two and a half. She had the same thing, very high fevers. She was usually fever free only a few days a month. Poor thing was so weak. They tested her for everything, but nothing showed up. Then she grew out of it. I hope this is your case. Unfortunately, Carissa does have POTS with a positive tilt. She has had various problems since second grade. She was diagnosed because of me. Our neurologists are looking into mitochondrial myopathy. I have disease of the muscles, so I will have a biopsy done this fall. My youngest daughter has been dx with Crohn's and psychiatric problems. She is starting to show symptoms of of dysautonomia. My brother and mother both have symptoms, yet are very functional. What causes the POTS is what could be heriditary, ie: ehlers danhos or Mito. My daughters are 9 and 13 and have already made the decision to adopt. It was my 9 year old who brought it up. It makes me sad. They do not blame me for their problems but they blame my mom. They do not care for my mom and have to be forced to see her. I still feel guilty taht they have to go through this. i hope in your case, this is not hereditary and your child grows out of it. Take care, Dawn

My daughter had a tilt table test this past Friday. Her symptoms have been mild lately so I was worried she would have a normal test. It was not normal and her heart rate went as low as 73 and as high as 150. Her heart rate jumped all over the place ,even while lying, up...down....up....down. Has anyone else had this. Her blood pressure was normal. She also had an abnormal Q-sort. which did not surprise me. She has always been intolerant to heat. Carissa has had problems since second grade. She was never able to tell me what was wrong or how she felt until this past year when things got bad in the fall. That is when I knew she had POTS, too. It is a relief to have proof of her problems. My husband always said she was a wimp and she needs to toughen up. I have always been there to defend her. She is an awesome gymnast and has always been on the honor role. Gymnastic has been getting very hard for her. She misses most of the practices. We have talked about her quiting, but I want her to make the desicion. It is a grieving process and it is hard for her to give up something she loves. I pretty sure she will be finished with it by the end of summer. We have been talking about it a lot. I feel sad for her that she will probably struggle with this for the rest of her life!! dawn

Briorose, THe first thing that came to my mind with the mini-strokes is a mitochondrial disorder. Have you ever had any stroke like episodes? Do you have a lot of migraines. It is worth them looking into to it somewhat. At least looking into your lactic acid levels. I do not mean to scare you. I just want to make sure it is not missed. Dawn

Thanks for sharing this information with us. Will this go away? Or do they have a way to treat it. I am happy you found and answer and hope you are symptom free soon. Dawn

Hi Nina...I am glad you did not pass out and Teri was there to take over. It stinks that we always have that fear of something happening. It is good that it doesn't stop you from living and you have a good sense of humor about it. My theory on why you are so symptomatic is that you had to spend the day in close proximity with your mother!!!! It sounds like you have a poor relationship with your mom like me. The thought of being in the same room with my mom makes me sick. Hope you are feeling better soon. Dawn

Wecome! I feel for youand what yoare going through right now. I was 34 when my problems became debilitating. For many symptoms do improve with time. It takes time to find the ride combination of meds and for you to figure out your body better...but things will improve with time. I hope you get as much out of this group as I have. Ask a lot af questions!! Best wishes, dawn

Amy, Lots of good advice here. Don't let the doctors push the conversion disorder nonsense on you. I went through the same thing. I was initially diagnosed with panic/ anxiety and conversion disorder. My neurologist blamed my ataxic gait on a conversion. I actually believed it. Don't let that happen to you. When my depression cleared up, my muscular problems got worse. Then I knew it was not a conversion. But I could not convince her. My first EMG was normal. I ahd one two years later by a doctor who knew what he was doing and it was abnormal. Proving the conversion diagnosis wrong. Don't worry...your EMG was probably done right. It sounds like muscle wasting and weakness are common in the beginning of POTS. I am an unusual case where my POTS is caused by a neuromuscular disease. My point is that you need to trust yourself and follow your heart. You know your body. If you are not comfortable with the answers that you are given...keep looking. Best Wishes, dawn

One of the things I recommend to all of you applying for disability is to send them information on POTS. I sent in Dr Lows article on how POTS is as disabling as CHF and emphysema. Good luck to all of you. I hope you get what you deserve. Dawn

I bet that felt good!