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Another newbie here. I have been reading your postings for about a year and have finally decided to register. I would like to thank all of you for sharing your knowledge and experience. Through your postings, I investigated seeing Dr. Low at Mayo. By chance, my former neurologist referred me to a Dr. who used to work at Mayo with him. I have POTS, Raynaud's, autonomic neuropathy, and asthma. Like many of you I have my "horror "stories of misdiagnosis and endless lab tests for about 6 years. If I start it would take me days to get it all down!! My new neurologist has sent me to a cardiovascular Dr. It is astounding to me that no Dr. had done an EKG on me. He did and found that I have a slow message to my atria. He is testing me for amlydosis and adrenal problems. The neurologist wanted to make sure my heart was ok before putting me on Mestinon. My concern is that I have asthma and Mestinon is contraindicated in those that have asthma. Do any of you on Mestinon have asthma? I am also concerned that many of you on Mestinon are having adverse affects. The RX info. indicates that there is a medication the Dr. can prescribe for those affects. Have any of you tried it?

To backtrack a bit - My family Dr. is a saint! He always believed my symptoms were real and said he would send me to as many doctors as it takes. My former neurologist asked me what I felt I had. I told her my autonomic nervous system and immune system were both taking a #@#. She said I think you are right and did the autonomic testing. I had been telling doctors this for years. I was diagnosed a year and a half ago. Norvasc helps the Raynaud's. I am less purple and blue, but I am still cold. The neurologist said if I am not cold from the Raynaud's, I will be cold from the neuropathy. I am also one who uses electric blankets and heating pads even in the summer.

Thanks again!

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Marie, welcome to our small corner of the internet. We welcome a new voice, even it it's because you're ill like the rest of us. How wonderful to hear of your primary care doctor...can we clone him??? <_< Nina

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Steph and MightyMouse,

Thank you! You have all been so helpful. When I first started reading your postings, I was amazed to read so many of you had the same problem with others not understanding that you are ill, with some days better than others. I do not look ill, so it is hard for others to understand. Others understand better since I have a name(s) for it all now. Before, I was beginning to think I was crazy with the various symptoms I have had and been tested for over the years. Yes, I would love to clone my family Dr. He insisted I not accept my last two neurologists' explanations and go to another one. He will write me a referral to Mayo if I want one. Since my new Dr. worked with Dr. Low, I hope I won't feel the need to go to Mayo. I almost had heart failure when the Cardiologist she sent me to apologized for not helping me enough and giving me enough answers. It was my first visit! He found the slow message to my atria and ordered other tests. I feel like I won the lottery on doctors after going to so many! I am a special ed. teacher and I have 3 kids.

Thanks- Marie

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Marie, I work in special education as well...I'm BCABA (board certified associate in Behavior Analysis). My speciality is autism, and I've been working in autism and behavior analysis for 19 years now. I'm currently in school for my Ph.D. in educational psychology, special education and behavior analysis at Temple University. <_<

I'm glad to learn that your experience with the forum has helped you feel like you're not alone with your symptoms.

Nina

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Hi Marie,

Glad you decided to join. I'm new here too. Just wanted to say that I have asthma as well and have gone off of my asthma meds since I was diagnosed with POTS. I think they were reasons why my symptoms got so bad to begin with. You are wise to question the Mestinon if you read that it has side effects. I've never taken it, but you should definitely bring it up with your asthma doctor (do you have a good one??) I wish i had known more about the side effects of my meds.

Kristen

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hi marie -

welcome! sorry you have reason to be here, but glad you found the forum. there's a lot of good info & great people to go along with it - as you have already seen :D a lot of us - me included - lurk for awhile before "coming out" and posting. so glad that you did!

it's great to hear that you have a good GP...can i sign up for one of the clones? i've been lucky to have good ones too but just moved and thus need to find a new one, something i'm not looking forward too!

i'm one of the mestinon-takers who has NOT had problems with side effects although i'm on a smaller dose than many. i don't have asthma though do have bad allergies that can when aggrevated enough can produce asthma-like effects (some docs would say i have asthma, some not....). my allergist, who is pretty in the know about autonomic issues, was okay with me being on the mestinon but did make me stop my allergy shots when i started a beta blocker - even at a super low dose. for me its a combo of mestinon, inderal, & midodrine that are helping my BP/HR issues the most. i'm on lots of other goodies for GI, uro, & allergy problems. i have autonomic neuropathy, OI/POTS, and NCS along with other things - some related, some not (cortisol deficiency, neurogenic/underactive bladder, gastroparesis/ slow motility, ulcerative colitis, raynauds, etc....the fun never ends!)

i hope things go well for you with the new docs...

again, welcome,

B) melissa

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MightyMouse - Congrats on you working on your Ph.D.! Where do you find the energy? I have taught middle school special ed. for 16 years. We teach multicatagorical, so every year I get a mix of kids with a variety of disabilities. Some of my fondess memories are of the kids who have autism. Have you attended an Atwood conference? I admire his determination and voice in educating others about autism. I am fortunate to be in a school district that supports educating teachers and other staff members about disorders such as autism. We have many parents that are great advocates for their kids. I wouldn't stay in this profession if it weren't for the kids with emotional disabilities to make my days both challenging and rewarding. I must say that my job is never boring! How ironic that we are in this profession and may need others to assist us in our daily living. I am so used to being the one to help others, I have difficulty even thinking about relying on others. That scares me more than the physical problems.

Marie

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I think that the irony is part of the master plan of the universe.

Working with kids with autism has taught me to be more empathetic, compassionate, and to look beyond what the surface looks like.

Like you, I have trouble accepting help...no, wait, that's not quite right. I have trouble thinking to even ask for help; and just as much trouble taking the help once offered. I think that messed up thinking also plays a part in my inability to fully accept my need for medications.

Okay, I'm getting too intense too early in the day! B)

Signing off for now, deepthoughtsmouse.

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I just wanted to welcome you to the board. I hope you find all your answers and the support you need here. I have POTS Autonomic Neuropathy, Gastroparesis and that's all I know now. I am also a mother of 3. What are the ages of your children?

I think it's wonderful that you work with children with disabilities. I wanted to go to school to be a teacher but this illness crept it's ugly head in overnight and left me with enough energy to just care for my children (6,3,&1).

Dayna

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Welcome Marie!

Glad you decided to stop lurking and let us meet you! :) (like most of the rest of us, I lurked for a couple weeks before introducing myself, too).

I'm so happy your MD has been so cooperative and supportive! Keep close to that one!!! :) I hope that you'll be able to find some effective treatments soon, now that you're finding out what exactly is wrong. I've found that a lot of people are more understanding now that I have "names" for my problems, too.

As for the Mestinon/asthma issue, I do have asthma, although it only occurs in mild-intermittant form. I usually have no difficulty with it unless I get a respiratory infection or very intense physical exertion (always took a puff before a demanding performance!). I've had no trouble so far on the Mestinon in that regard, and Dr. Low didn't seem to think I'd have problems in that respect. If you have more severe asthma, it might be more of a problem, but that takes me out of my medical depth! :) I'll leave it for someone else to comment on! :)

I haven't tried any of the medicine you referred to to counteract the Mestinon side effects, particularly since I haven't really had much in the way of adverse side effects. Sorry I'm not any help there either! :) I do think the Mestinon is definately worth a try at least. Make sure you stick to the normal precautions to minimize the likelyhood of severe side effects (super low dose that works up gradually over many weeks, food and lots of water when taking, etc.).

For the Raynaud's, have you ever tried those little heating packs they sell in ski shops? My mom and a friend (who also has POTS and many complex cardio problems) use them to keep their purple Raynaudized digits warmer. You crack the little cake inside the packet, pop it in gloves or shoes, and have a toasty source of warmth for 6 hours or so. On really bad days, my mom keeps her gloves in her lap at work so she can give her hands a quick warm-up in between typing or answering the phone. They are a little on the pricey side, so she uses them only on really cold days.

Hope you see some improvement soon! Welcome aboard once again!

Angela

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Janeeyre9- Thank you for the info. on asthma. I tried all asthma meds. when I went to a pulmonologist. I have cough variant asthma that is active all the time. I just cough a lot everyday and try not to use my inhaler. The albuterol makes me shake too much and it triggers my raynaud's which I have in my entire body. I take singulair, zyrtec, and rhinocort. They decrease the coughing slightly. I even took a drug that supresses the cough receptor in the brain. It does nothing for me. I have hypersensitive bronchial tubes. Just breathing and eating cause attacks. The funny thing is I don't have allergies, but anything triggers it. I am on zyrtec to help the sinus pain.

Thanks again- Marie

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Sunfish and Eillyre - Thank you for the welcome and information on mestinon. I will see my neurologist in a month or so to see it she will put me on it. I get the echocardiogram and adrenal test results in Sept. I have tried those heat packs for my hands. I use the gel heat packs at work because I can reheat them faster in the microwave. I have raynaud's in my entire body, so it is hard to keep warm at work while teaching. Dressing warm does not always prevent my raynaud's. If I dress too warm, I overheat because I do not sweat. When I take the layers off to cool off, it triggers raynaud's. Norvasc helps the raynaud's a bit. I am not as purple and blue. My neurologist also said I am cold because of the neuropathy.

Thank you again for making me so welcome here-Marie

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Guest Julia59

Marie,

Welcome, welcome, welcome!

First, I'm sorry you had to go to so many ignorant doctors, but i'm glad to hear there was a pot of gold at the end of the rainbow for you with your current Docs.

The various forms of dysautonomia are still not well understood in parts of the medical community. I have seen some progress----slowly but surely. Part of the progress is hearing your story about the apology from the cardiologist------woo hoo------ ;) .

I recently in the last few months had a bad expereince with a Neurologist. I wrote the president of the University Hospital he was affilated with, and would you believe the president sent me a letter apologizing for my bad expereince with that Neurologist. Another step in the right direction................. :)

You will find a lot of support on this web site----along with loads helpful information.

Good luck with your future testing.

Julie :0)

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