lgtaylor100

I guess I will have him check for heart damage since others have talked on this forum about damage. I will also ask him about Bystolic, although I believe that Coreg and Bystolic are similar in that they are central beta blockers. If anyone else has any ideas please let me know.

I have a cardiologist appointment on Wednesday. It is with the cardiologist that originally diagnosed me with dysautonomia just by noticing my rapid heart beat. After that appointment last January I was formally diagnosed with a TTT by an EP at Jefferson Hospital in Philadelphia. The EP only diagnoses but doesn't treat. My cardiologist who I will be seeing on Wednesday is not very familiar with dysautonomia and has had only one other patient with the disorder. At my last appointment with him this past March, my heart rate was not as high as when he originally diagnosed me so he said I was getting better even though I told him that I felt awful, particularly with the disabling fatigue. My question that I am putting to all of you is what should I ask of him at this appointment. I am on Coreg, Midodrine, and amitrityline but my heart rate still goes up 30 points on standing, I am still extremely fatigued, and have severe exercise intolerance. I would like to make the most of this appointment. Any suggestions? For those of you who saw my post about not being able to post new topics, I figured it out. I had to be on the forum screen and not on the view new content screen. Lynne

Naomi - I sent you a PM about Dr. Weimar. No rush. I just wanted to make sure that you saw it because the lay out is quite different. Thanks, Lynne

A+

Naomi - Who is the doctor who did the AChR. I've asked for that test and I was told that it was not commercially available. Is this the neurologist In NY. Please let me know his/her name. Thanks, Lynne

Arizona Girl and anyone else who has any other ideas - My rheumatologist says that my Ana is not high and points to the info that many people over 60 after positive ANAs. To me that is not a good answer because of all my symptoms but he is very knowledgeable about Sjogren's. The pattern type is speckled which is indicative of Sjogren's. Also, he told me that my lip biopsy was not negative but did not meet the criteria for Sjogren's. The SMA is an auto-antibody which could indicate auto immune hepatitis but no one is taking that seriously either and says it is only slightly elevated and these are non specific tests..I have also been tested for other rheumatic diseases (autoimmune) and they were all negative. I did test positive for POTS on a TTT. My symptoms are severe fatigue, tachycardia, weight loss followed by weight gain, dry mouth and dry eyes, hair loss, neck pain ( have some cervical stenosis), pain and weak feelings from the waist down, I am not actually weak and pass all of the standard neurologic tests as well as an EMG. Nonetheless, I am getting sicker and sicker. I have adrenaline surges that last for hours and leave me totally wiped out. I also do not sleep well and wake up three and four times a night. I have been to almost every kind of doctor(except endocrinologist and neuro- muscular) who I will see within the next few weeks. I have been tested for many things.Most things are negative but I do have a low IGg 3 which falls below I have been to two dysautonomia specialist and neither were very helpful. Any ideas for next steps would be appreciated.

I get that heavy anchor feeling in my chest sometimes in the morning when I am awake in bed but haven't gotten up yet. Fortunately this hasn't happened in a while. I also get something that seems like an adrenaline surge. It's in the morning after I am up for an hour or two. It is a shaky, jittery feeling. It feels terrible, lasts through the morning and then goes away in the afternoon.

Thankful and Naomi - It's so hard to say , since our symptoms are so variable. The doxycycline definitely helped the dry eyes and I did have more good days when I was taking the larger dosage than I am now, so maybe it was helping with inflammation. Might be worth taking the 100 mgs a day again to see if I feel better.

Naomi - The Sjogren's specialist is Dr. Vivino at the U of Pennsylvania. He is one of top experts in the country on Sjogren's. So if he says I don't have it I guess I don't. He says the Sjogren like symptoms are probably from the dysautonomia. The lip biopsy wasn't that bad. It was sore for a day or two but no numbness after the anesthesia wore off. Also, I am still taking a small dosage of doxycycline for blepharitis but my primary doctor seems to have given up on the Lyme theory. I'm feeling worse after cutting my dosage of doxycycline though. Not sure what that means. Lynne

I am actually standing or walking for very little time during the day. Maybe about an hour broken up into shorter intervals. Once during the summer I went to the art museum and was upright for about 55 minutes. I went to a small zoo with my grandson and was probably up for about 20 minute intervals. Does driving count? I am able to drive for about 45 minutes and that is mobile but sitting.(So I guess that doesn't count.)

Todd - I am 62 and my 86 year old mother definitely has more stamina. Alicia - I wish I could treat my symptoms effectively nothing has worked so far. I would love to be able to hide my symptoms from my family because except for my husband they are really having trouble wrapping their heads around this invisible illness. Lynne

That's weird. I was the one person in the 60-70 year age group. I'm still here. Don't know how the vote got deleted. Some people find it surprising that I got this horrible disorder only a year ago when I was 61.

Arizona Girl - How were you able to determine that your neuropathy is autoimmune? Does that mean that your POTS is autoimmune also. How was this determined. I am going to see a neuromuscular doctor next week but I don't know if he treats autoimmune neuromuscular disorders. I have a positive ANA 1:320 and a positive smooth muscle antibody. I went to a top rheumatologist thinking it was Sjogren's because I have so many of the symptoms but the lip biopsy did not meet the criteria for Sjogren's and the blood work did not indicate any rheumotological disorder. I thought the Sjogren's could be causing the dysautonomia. I also believe that POTS is a symptom of another condition and so does my primary doctor but so far we have had no luck in determining it.I will be seeing an endocrinologist in a few weeks. After that, seriously thinking about Mayo. If you already answered my question in your detailed explanation, I apologize, but I am very fuzzy today. Thanks, Lynne

Does anyone take Mirapax for restless leg syndrome. My doctor just prescribed it and I am interested in anyone's experience with it.Since my worst symptom is fatigue and my sleep study showed restless legs (although I am not aware of it) he thought it might help me to get better sleep and maybe help with the fatigue.

I realize that everyone will need to appropiximate on this, but I just wanted to have some idea. I know its hard to say. Some days I have just a few hours that are good, so would I call that a good day or a bad day? I guess that depends on my mood.

Thank you everyone for your responses and votes. What I gleaned from the poll was that not able to work/ able to work was two to one. For each person that is able to work there are 2 that are unable. Many of us socialize and do errands and shop but it is uncomfortable to do so. Many people have good and bad days; for me they are bad and worse days. In short, most of us struggle to do most of the things that we do. I think it would be interesting to find out how many days in a week are good and how many are bad and I will start a new poll for that.

Chaos - that is really weird that your pattern was so like mine. Has anyone addressed this issue with their doctors?

I started off just with fatigue( April through June, 2010. Then within a few months (July and ongoing) I was experiencing tachycardia and sensitivity to heat. During this time I lost about 25 pounds unintentionally. Dry eyes was also one of my early symptoms.I was diagnosed with POTS in January, 2011. During that time I was sensitive to light and sound. That has since passed. I developed pain in my neck and back last fall and the pain has been ongoing and increasing. Now I have what seems like muscle weakness in my legs. The weight loss has turned around and I gained the twenty five pounds back. Yes, some of the symptoms have waxed and waned. Even the tachycardia waxes and wanes but the severe fatigue stays with me.

Has anyone else lost significant amounts of weight (without trying) and then gained weight. I lost about 25 pounds when I first became ill from June to December of 2010. Then I gained back about five pounds and stabilized there for a while. Now I have gained back the entire 25 pounds and a few more. I am seeing an endocrinologist in a few weeks but I'm wondering if anyone else has experienced these weight swings from dysautonomia? This is very disconcerting. Along with all of the other problems, last fall my clothes were falling off of me. Now the same clothes are extremely tight.

I am of Eastern European ancestry so I guess that breaks the mold a little. My maternal grandmother died at age 56 of a perforated stomach ulcer. I remember her as having low energy and spending a lot of time lying on the sofa so maybe she had POTS. No other familial connections.

I'm not able to work. I can socialize for short periods of time if I am sitting. I have a great deal of exercise intolerance and become very dizzy in stores so I do very few errands.

Hi everyone, I've never set up a poll before so I hope it works. I've noticed through the past several months varying levels of activity among forum members. I am curious about how debilitating your symptoms are. Please check off as many as apply as well as posting information about your level of functionality. Lynne

Thank you for your quick and detailed reply. I am seeing a neuromuscular doctor at U of P in three weeks. Do you live in the Boston area or do you travel there for treatment. I too feel somewhat alone in all of this. I do have my husband who has been wonderful, but my children are busy with their lives. I do get to see my grandchildren because I am still able to travel (one group lives only fifteen minutes away and the other about an hour and a half) to see them (with my husband's help). Wishing you the best, Lynne

Hi Bellamia - I am curious about what prompted your workup for mitochondrial disorder. (If you already posted that and I missed it, I apologize.) I'm curious about the chain of events that led up to this workup. What kind of a doctor suggested it to you? I'm asking because I have lately suffered with weakness in my arms and legs and severe exercise intolerance. It sounds like it was a tough experience and you got through it. Hugs to you and I hope that something positive comes out of the experience. Lynne

I think I am going to try leg weights and walking in the evening when it is cool. I have not walked all summer because of the heat and I really hate treadmills. I'll let you know how it goes. Any suggestions for protocol? Also my appointment with the neuromuscular doctor is on October 5th. I'll let everyone know how it goes. About the time that the leg weakness started I also started getting occasional muscle twitches. Does anyone else have these? I wonder if it connected.