Traci Posted July 8, 2005 Report Share Posted July 8, 2005 hello all, My name is Traci and I am new to this forum.I have been experiencing alot of strange symptoms in the last six months. Scary symptoms.In the beginning my heart rate would increase upon eating or sitting up or standing just slightly. Now most of the time on standing it is in the 140 range.I have been ill with many different types of symptoms, at first they suspected MS and ALS after alot of muscle loss, but my neurologist is almost positive I do not have either do to testing. I have seen numerous doctors and they just think my symptoms sound strange, which is driving me just a little crazy. I have had numerous negative tests. My cardio tests all came up negative.I feel wobbly now alot of the times when I stand up. Lately when I sleep I feel like I am losing circulation in my arms and getting burning strange sensations. I can't sleep on my right side for the symptoms are even worse. At times I wake up at night and have to walk to ease the loss of circulation symptoms, which seem worse on the right side. Sometimes I get this terrible gagging feeling. I also have alot of aches and pains and numb feelings. Sometimes when I turn my neck to the right I feel a little off balance and my mouth goes dry and my nose gets a little plugged. If I put pressure on my upper back I feel weird feeling in my arms and head. Also sometimes when I am walking I fell pressure going through my body and my hands change colors, red or blue.My neurologist is now sending me to an autonomic doctor.I am just wondering if anybody else has experienced these types of symptoms?I have been going through quite a tough time for alot of people in my life do not understand the symptoms including alot of the doctors.Traci Quote Link to comment Share on other sites More sharing options...
Ernie Posted July 8, 2005 Report Share Posted July 8, 2005 Hi Traci,Welcome to our little world.You might ask your specialist for a tilt table test among other tests.Ernie Quote Link to comment Share on other sites More sharing options...
ariella Posted July 8, 2005 Report Share Posted July 8, 2005 welcome TraciYou should be proud of your neuro for sending you to an autonomic doctor.Many of us her have been bounced around here for years misdiagnosed and undiagnosed. Wishing you luck on your journey, we're here if you need us.POTS causes many weird symptoms, see list on DINET.......Ariella Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 8, 2005 Report Share Posted July 8, 2005 An evaluation by an autonomic specialist does sound like it is in order for you, based on your symptoms and tests to date. A tilt table test is the basic diagnostic tool for POTS or NCS. Have you had a holter monitor? Try to keep a diary of your symptoms as that information may also be helpful to the specialist.There ARE medications and other treatments that will probably help you if you have POTS or another dysautonomia. That's the good news.To answer your question about specific symptoms--the symptoms you describe can be associated with dysautonomia. I have had many of them and I have POTS. Some things you might try in the meantime to see if they help are--exercise, increasing fluid intake and compression hose. If you can exercise at all, it is good to try to do that--especially anything to strengthen your legs--even if it is just 5 minutes of floor exercises a day. Of course, it is best to talk to a doctor before starting anything that could affect a known medical condition, if you have any.Take care,Katherine Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 8, 2005 Report Share Posted July 8, 2005 Traci,You are not alone in your symptoms and you are not alone in your docs reactions to your symptoms. The good thing is that you are being referred for autonomic testing! Stick around and you will find the support you need here.Ann Quote Link to comment Share on other sites More sharing options...
Sunfish Posted July 9, 2005 Report Share Posted July 9, 2005 Hi Traci - welcome! sorry that you have things going on health-wise to bring you here but glad you found the forum. there's a lot of great info & great people to go with it. i've had some of the symptoms you describe & have heard all of them described by at least someone else at some point. diagnosis is really tough as a lot of symptoms overlap between different disorders. it's great that your doc is pursuing getting you in to see an autonomic specialist. do you know who you will be seeing? and i know others have asked already, but i'm curious to know if you have had a tilt table test yet?good luck & let us know how things go with the new doc...:-)melissa Quote Link to comment Share on other sites More sharing options...
Traci Posted July 9, 2005 Author Report Share Posted July 9, 2005 Thanks to all the welcomes!In regards to my heart, yes I have had a holter monitor test a couple of times and an echo, which were all normal.I'm having a tough day today, my heart doesn't seem to want to slow down at all and I didn't get alot of sleep last night for I felt like I was losing circualation in my arms and even my head felt strange and my neck doesn't stop burning. Does anybody else get these symptoms and if they do how do they cope and get some sleep?Sorry for all the questions. The symptoms I seem to be experiencing are getting worse and I'm having a difficult time. Most of the time, well nearly all the time, I can't stand still in one place without severe discomfort in my legs.I can't wait to see the Doctor and no presently I am not sure who I will be seeing. I find out about the appointment next week, hopefully Monday. As for the tilt table test, I have not had one yet. Traci Quote Link to comment Share on other sites More sharing options...
nantynannie Posted July 10, 2005 Report Share Posted July 10, 2005 Hi Traci,You asked what we do for the symptoms, many of us take medications, some try other coping mechanisms, such as eating small meals, that you will hear about and most of us use a combo. You might try compression hose for the feeling in your legs, but most of us cannot stand for very long regardless of medication or compression hose or anything else. I take a beta blocker for the tachycardia, a neuropathic pain medication for the burning pain and sleeping pills to sleep, as well as other meds. Sorry, I know it sounds pathetic, but that is my reality at this point. I fought medication for a long time, but now I am not sure I could live without it! I am sure you will get more responses soon. Let us know if you have any other questions. Ann Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 10, 2005 Report Share Posted July 10, 2005 TraciSorry you are going through such a tough time with so many symptoms. For me, POTS came on very quickly and I became incapacitated by it within weeks of the first noticeable symptoms. (Although I had had mild symptoms for years previous). It took months for me to be diagnosed and treated. I hope things move faster for you as far as appropriate diagnosis and starting some treatment. In the meantime, I would suggest that you try some of the non-medical procedures and treatments to see if they bring any relief--again some of these things, like increasing salt or exercise--you may want to consult with a doctor first before starting.Yes, the symptoms you describe, I have experienced. I would wake up and my scalp or arms would be "asleep", for example. I also in general had trouble sleeping. Insomnia is a common complaint for POTS patients. I used xanax, sparingly, for these troubles, and it helped a lot. Eventually, a low dose SSRI is what helped me. I no longer experience most of the typical POTS symptoms with any severity.Take care and let us know how you are faring.Katherine Quote Link to comment Share on other sites More sharing options...
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