DawnA

Hi Nina...just wanted to say I hope you are feeling better soon. Green snot is miserable!! thinking of you. Dawn a

This is an interesting topic. We are all so different. I just went off of effexor and my tacycardia was bad. I have been very POTSY. I don't know if is from the withdrawal or if I need the SNRI. I took an effexor today and I am doing better, but I am reluctant to say it is because of the effexor. It is soo hard to figure this stuff out. Dawn

Sorry about your visit!! I can not believe they did not have you stop meds before tilt. They must of been wanting to see how you are doing on the meds. But this is not very accurate. I can do well for a while then very poorly with no change in meds. This is disappointing. Iwould of been nice to get some info and possible medication changes. It ***** having to prove ourselves. Thinking of you! Dawn Anich

Congrats on the baby girl! Welcome to the world Gabrielle. Best Wishes, Dawn A

Hi Nina, Sorry to hear about the bad EMG results!!! That is a real bummer. Yeah I can have that trucker mouth on occasion. It feels good to let loose sometimes. Its good that you can have a sense of humor despite. Humor is sometimes the only way. Keep smiling and watch that mouth of yours! Dawn

No Ernie, I did not do that. I am not one to pass out. The way I would of had to do it was stop taking meds and really overdo myself. That would of put me in a metabloic crisis. For a long time I thought that maybe I just had dysautonomia and the rest of my symptoms were because of a conversion reaction. So I did not bother. Finally it was prven that there was something going on with my muscles and i was ataxic. That is when they decided to do the muscle biopsy. After the abnormal muscle biopsy, a friend from the mito support forum strongly suggested I se Dr Whiteman who specialized in metabolic diseases. When I called Mayo and told them about my report they scheduled an appointment. Also, At first my insurance did not cover Mayo. That is why the ER thing was suggested. Now I have insurance that covers Mayo clinic. I feel so very fortuante not to have to wait a whole year for tests. I could not stand that. It just does not amke sense. Best Wishes, dawn a

I am glad you found us..Happy Tearose Day. I'll have acup of coffee and toast to you. Thank you for all of your wonderful Posts. You bring so much to this forum and have brought us all closer together. Big cyber hugs Dawn A

Your appointment sounds somewhat positive with the fact that he is openminded and sounds willing to look furthur into things. it is too bad he is not a neuromuscular specialist, but maybe that doctor would of not been so openminded. The Canadian healthcar system sounds really frustrating. how can they diagnose anything. You have to wait a whole year for an EMG. That is crazy. I like someones idea of going to Mayo to visit. You could faint on the street then go by ambulance to the ER. I was told to do that when I kept getting rejected from Mayo. In your case it sounds like the only way to get answers. Would the canadian healthcare system have to pay for that visit? You are in my thoughts and prayers. You deserve answers!!! DawnA

good new!!Glad to hear things went well. rest well. Dawn

sounds like POTS brain fog. I know of people who had neuropsych testing come back normal. Dawn

A muscle biopsy is the last step in diagnosis. A skin biopsy done in a dermatology office can also tell a lot and that is usually done before a muscle biopsy. That little piece of skin can give a lot of information. If you have not had an EMG, definitely ask for one. Your Emg can be normal and you still may have muscle disease. You should have some metabolic blood tests run to, such as CPT, CPK, urine organic acids...Your periodic paralyisi sounds like a metabolic myopathy. I recommend a web search on metabolic myopathys. Keep us informed regarding your appointment. Best Wishes, Dawn

Go for it Amy! I am at Dr #10. I will be adding more to that list with the neurologist at MAYO. I also may be seeing a rhematologist at Mayo. It depends on how the tests turn out that Dr WHiteman ordered. I have had an increased ANA. Don't give up. May we all learn from one another. Dawn

Amy, I am sorry you are going through this. Do you have muscle weakness along with the wasting. Have you considered seeing a neurologist who specializes in neuromuscular disorders? Do not worry about your Dr being angry. He is not the one living with this. You deserve answers!!! Do what you feel is best. Best Wishes, Dawn Anich

Sure Amy, I do not mind sharing my family history with you. As far as genitics of mito...it can be sporadic or there is maternal inheritance. SOme of the enzyme deficiencies come from both parents. My family has a maternal inheritance (meaning mothers pass it to children) that is quite obvious. My mom has all sisters so it is girls in my family. maternal grandmother died at 47 asthma????? mito can make you very short of breath! mother-67 fibromyalgia, stroke at 57, heart disease, interstitual cystitis, mental illness, muscle pain, ptosis, seizures ....recent complaints of muscle weakness, and gait difficulties, fatigue, migraines maternal aunt- died last month at 61 from heart failure. knowledge of history limited. Spent the past ten years in a wheel chair at a nursing home. Also ward of state of California due to mental illness. Maternal Aunt-64 presently in a venilator hospital in Michigan. She has been on a venilator one month. Multiple health problems!!! Wheel chair for eight years. brother- asthma, mild complaints of muscle problems and orthostatic intolerace. migraines myself-CFS,fibromyalgia, POTS, autonomic neuropathy, GERD, intestinal dysmotility, ataxia, muscle weakness, myopathy, asthma, depression, CPT deficiency Daughter- 13 POTS autonomic neuropathy, migraines, sickly as an infant, requires frequent meals and high calories or feels ill. asthma daughter-9 crohns disease, depression/anxiety, learning delays, short stature and autonomic symptoms. asthma Amuscle biopsy is the last resort for trying to diagnose a mito disorder, however a normal biopsy does not rule out mito. THere are a lot of specific blood tests, genitic tests, urine tests that can help determine what is going on. All of my blood tests have been normal which is common in adults. A skin biopsy can test for a lot of things and not as invasive as a muscle biopsy. A physician doing the testing should be knowledgable in these disorders and know what to look for. Even if you do not have a family history does not mean that you do not have a genetic disorder! I hope this information is helpful. Dawn A

Interesting stuff Tearose...thank you for sharing. It is great to hear that the Dr spent 35 min with you on the phone. That is soo rare. I am glad you got answers to your questions. Dawn A

Good luck on your surgury Emily. I have not kept up with the posts. When is your surgury scheduled? I will be thinking of you. It will feel good to get that nasty gallbladder out. Best wishes, DawnA

Ernie, I wish I had advice for you. I hope and will pray that you have a neurologist who is openminded and has a good heart. I have not had much luck with neurologists myself. Does this neurologist have a specialty. Is he/she familiar with metabolic myopathies? Have they analyzed you for periodic paralysis? It sounds like you have more that one thing going on. Lets hope this neurologist loves challanges. DawnA

I feel for you . I ahve felt the same way many times. Right now the pain seems so unbearable, but you will get through it. You will have hope again. You are not crazy. My concern is that you are off of antidepressants and it sounds as if you are going cold turkey. This will definitely make you more depressed. Maybe you do need to try another antidepressant. I am sorry to hear that your parents are not very supportive. It sounds as if they are in denial. Are they educated about POTS? My husband is supportive of me, but does not accept that my daughter has POTS. He can be hard on her. He is definitely in denial. With me my problems are ovious with neuromuscular problems...POTS symptoms however are more debilitating. SO for my daughter her symptoms are invisible. You are very strong to have come this far in your education. THis is something to be proud of. I too suggest finding a good counselor. You could use someone to talk to about all of these emotions and to show you support. All this emotional stress makes our POTS symptoms sooo much worse. Best WIshes, Dawn A

Kristin, Hope you are doing better now. I agree with Ernie....IV fluids ahve always helped me recouperate the fasted. Which you need when you are caring for young children. Take care, Dawn A

Thank you everyone for the welcome backs! It was a good trip, but I did not get to make my crooked scarf. I had the yarn, book , but lost the hook. Oh well their is always next trip. I was able to manage well at Mayo, having my htel connected. I difinitely helped that I was post menses. If I had gone the week before, it would of been difficult. Fotunately my next trip is around the same time of the month. As far as my biopsy goes...my neurologist in milwaukee told me I did not have a mitochondrial disorder. I have myofiber degeneration, a slight accumulation of lipids and mitochondria. It show a metabolic myopathy. It was then sent in for CPT analysis, which came back normal. Yet it was not normal. Everything was either low or high. Dr Whiteman said he was more lenient on the results and considers a CPT deficiency at 50% were I am at. But, a CPT deficiency does not explain all of my problems. CPT is an enzyme that breaks done fat before it is oxidized in the mitochondria. He said that my abnormal muscle tissue is that of someone at the beginning stages of mito. Based on that, my multisystem problems and family history he strongly suspects a mito disorder. Yes I* have suspected this for over a year now. The funny thing is I never even mentioned to him that I thought I had a mito disorder. Hopefully the skin biopsy will give us more information. I am probably looking at another muscle biopsy in the future. Kristin, did you see Dr Rhead at CHildren's? Dr Whiteman mentioned that my girls should see him. Dawn

Hello munchkins! I'm back! There are soo many threads here to catch up on! My trip was good and I was physically doing pretty good. It always has to do with my menstural cycle. I saw Dr David Whiteman a metabolic geneticist. He was brilliant!!! Unfortunaely my medical records and referral letter did not reach him. Fortunately I had copies of all of the results from my muscle biopsy and a few other records. It was good that he did not get to read any of the notes that say I am crazy. He was very thorough and suspects mitochondrial myopathy. Which my neurologist said I did not have. HE told me what I have is REAL and I am not crazy, but Drs may tell me this, if I have not already heard it. It was soo nice to be validated. He explained all of my biopsy results and was concerned regarding family history. He was able to describe my oldest daughter as an infant to me and feels my nine year old does not have Crohn's disease. He feels she has autonomic dysmotility. I totally agree. I have not followed up with her gastroentology appts and took her off of her Crohns meds. She is fortunaely doing well. He mentioned seeing my daoughters after we figure a few things out with me. I had a lot of blood work done. I also had a skin biopsy, hearing test, ekg and a n echocardiogram. I wish I knew the results of my echo. They would not give them to me when I was there. I go back in one month and will see neurology. I am not seeing Dr Low. I am seeing Dr Folger for general consultation and he will decide if I need autonomic testing again. Dr Whiteman is more concerned about the overall picture. He noticed that my left lip droops. I strongly recommend to anyone who feels they have something genetic going on to see a geneticist. They are a different breed of Dr. I have seen two of them and have been impressed. They are very skeptical of any other Drs opinion and dx. They want facts and are very very detail oriented. They do not miss much. They are very good at putting the pieces of a puzzle together and finding answers. Dr Whiteman spent an hour and a half with me and had so much to say my head is still spinning. I have never been more impressed. Dawn A

Well I am traveling on my own and fortunately I am feeling a little better. I think I am coming out of my big crash. My hubby said they are going to have the house spotless for me. So I'm off to see the wizard the wonderful wizard of OZ....... I'll be back!!! Dawn a

I am so glad you had a good visit and that this Dr is taking so much interest in your case. I hope MAYO is sooperative and you get some advice/ansers. Take care, Dawn

"ditto on sudefed" It makes me feel terrible dawna

Hi Julie, The Dr you are going to see may be on your side too. Mine seemed to be. I have a copy of his note and he recommended that I get SSDI. I do not think you need a lawyer at this point. At least wait until you are denied. But the one problem I ran in to was that they did not consider me disabled until the date I had my appointment with DR Heffez. I had been disabled a year and half before that. I did not want to fight this and took what I could get. I was sooo happy to not have been denied my first time. As far as the neck brace goes...if you only have to wear it three hours a day...maybe you should not wear it, but bring it to the appointment. I would be concerned about the neck brace seeming factitious and first impressions are lasting. That is just my thought. Good luck! Make sure you get a copy of the Drs report. Dawn A