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Hi Kim. I saw a physiatrist for pain in my hips. I have an old injury from military service that still causes me pain after 12 yrs. I have some osteoarthritis in my joints. The physiatrist I saw was at the VA. He tried to give me steroid injections in my hip to alleviate the pain. It didn't work and he referred me to PT.

I saw Dr. Cheshire recently for my autonomic neuropathy. He is one of the neurologists on staff at Mayo in Jacksonville. He was pretty thorough and made note of everything I said and didn't write me off as anxiety (even though I have Bipolar Disorder). My case is extremely complex. I have a LONG list of symptoms. He referred me to urology and GI (I am incontinent). I have also seen pulmonary and cardiology who helped to confirm his suspicions. I went to their autonomic function lab for TTT, Valsalva, and QSART. Cardiology did an ANSAR test. I'm due to see GI in about a week for my digestive issues. Overall, my experience has been pretty good.

Hi all. I haven't been here in a while, but I'm looking for some feedback. I have an autonomic neuropathy. I don't have hypotension. On the contrary my blood pressure is elevated (130's/90's). Not too bad. But needs to be addressed. I also have a sinus bradycardia. My HR rests in the upper 40's to lower 50's. I had a sleep study about 1 1/2 months ago and my mean HR overnight was 37. My PCP started talking about a pacemaker. I have seen a cardiologist about all this who ran a holter, an echo and two ekg's. I have heard about a medication (beta blocker) called Carvedilol. It lowers blood pressure but has minimal effect on HR. One of the side effects was rapid weight gain, since I'm already slightly overweight, that concerns me. Has anyone been on this medicine? What are your thoughts?

Hi all. I had a sleep study a few nights ago and I had a low bradycardia mean of 37bpm. It held steady all night long. My mom and my wife are nurses and encouraged me to follow up with my PCP. I made an appointment and saw them this morning. I described symptoms of bradycardia in the evening with the lowest I've seen at 36bpm. The highest I've seen is 193bpm. My wife works on a telemetry/cardiac floor. This morning, my doctor mentioned potential sick sinus syndrome and referred me to an Electrophysiologist for an EP exam. Anybody had one of these? The Dr. said I may need a pacemaker to regulate my heart beat. Thoughts? P.S. I get all my specialty care at Mayo in Jacksonville where I live. I'm trying to see cardiology there but am kinda having to battle my insurance as they are trying to send me somewhere else. Mayo is helping me and trying to get the authorization approved. I really want to go back there. They have all my records and I don't have to repeat tests, and exams. I also don't have to retell my story over and over of why I'm there!

If you take beta blockers such as Propanolol or Metoprolol or the like, these meds are associated with bradycardia. During the day, my HR sits around 70 due to my metoprolol. Without it, my HR hovers around 100-105 bpm. But in the evening, when I've been relaxing for a while, I've received readings on my pulse ox as low as 38bpm. My BP cuff says about the same thing. I logged a 37 on EKG once. It scared the nurse. I'm having a sleep study done on the 21st so I'm curious to see what my pulse does in my sleep. I take a medicine that sedates me so I'm curious what the study will show. I sometimes have difficulty breathing and I'm wondering if it has anything to do with my HR. Side note: I have an autonomic neuropathy

Green plaid sounds pretty cool.

I received albuterol breathing treatments and went home with a script of prednisone. Prednisone made me jittery.

I'm am supposed to have a sleep study done sometime in the next couple weeks. I had one done about 5 years ago and it was negative for sleep apnea. I tested positive for nocturnal hypoxia though. I had a pulmonary function test done about two weeks ago and a chest CT yesterday. PFT reiterated my asthma dx. That's my third one. I've had several chest x-rays. I've been in the ER about 3-4x for difficulty breathing. I have had a few EKG's as well.

Hi all. Yes, I am getting used to using my "stick". It's really coming in handy. I used it today when I went to my appointments at Mayo. The hospital is very big and it's a long way from the parking lot to the medical center. Helps with my joint pain when I walk long distances.

Hey Kim. Thanks. I am looking forward to meeting with the Mayo urologist on Tuesday. I don't know if he'll be able offer me something I haven't tried. But, maybe. I'm hoping he can help me tie my bladder and digestive issues together and say they are related to the same condition. I think my continence issues are related. My gastro doc and previous uro doc(s) say they are. But it hasn't been good enough as far as my disability case goes from the VA. I'm hoping one of the leading research hospitals in the world carries more weight! Any help with my case is always good!

Just an update: I went to Mayo on Friday. It was a pretty productive appointment. Go figure, the neurologist did not write me off as just another anxiety case. He actually listened to me and noted my entire complex medical history. He referred me for autonomic testing. My TTT was normal, however, it was discovered on my Qsart that I do not sweat. This explains my heat Intolerance. He confirmed with my list of other symptoms what my referring neurologist already thought, that I have a mild autonomic neuropathy. He noted that it was not autonomic failure. I also have breathing issues so I am having a chest CT tomorrow and I see urology for my (lack of) continence issues on Tuesday. I follow up with the Mayo neurologist at the end of the month for treatment plan.

Hi. I guess this scenario applies to me too, such as before a major doctors appointment. My appt's are usually in the early morning. If it's a big one, such as the one I've got coming up with Mayo this Friday, my anticipatory anxiety will be high. As will my BP and HR. Doctors call it white coat syndrome. Anyway, before such appointments, I will not sleep the night before and be wired in the morning. This happens even though I take medicine to help me sleep. I have Ativan to help me relax for tough times. Like others, I feel my anxiety is warranted as a fight or flight response due to the fact I've had bad things happen to me in the past that could necessitate such a reaction.

I have an anxiety disorder amongst other things. I have tried some SSRI's and SNRI's. I currently take Wellbutrin as I have no side effects from it. I believe it's in a class of its own. My doctor has prescribed me Prozac, Paxil, Lexapro, Celexa, and some others. I don't remember how they all worked. But the thing is, if you don't get satisfactory results from one, there are plenty others.

Hi Razzles. I too have an appointment with Mayo in June. I am anxiously waiting. I'm seeing Dr. Cheshire at the Mayo Clinic in Jacksonville, FL. Please let us know how your appointment goes. I'm unsure what to expect.

Hi TCP and Tara. No, I don't have diabetes. My glucose is normal. The doctors are still working on the cause of my neuropathy. It could be the result of medical treatment for my Bipolar Disorder. I have been on a lot of medications over the years trying to get stable. Some of which have neuropathy as a side effect. So it's possible my neuro issues are iatrogenic. That what we are trying to figure out. My neuropathy presented itself first with enuresis. It's been all down hill from there.

Hi Finnmin, I am diagnosed with autonomic neuropathy. It is not clear yet what my diagnosis entails. To answer your questions, I have not been able to duplicate the breathing troubles that I sometimes have. It's not everyday. So I haven't been able to track any desaturation readings. Mine have all been 97-98. When I required oxygen, my levels would drop below 85 for more than half an hour. Which is rather dangerous. The oxygen I was prescribed at night came from an at-home concentrator. It was big, and HEAVY. Not portable. The respiratory company came to service it about every 6 months. They gave me the cannula tubing to replace every week or infections can occur. The rental cost was relatively low. As for your next questions, Low oxygen saturation levels can exhibit as fatigue, brain fog, and cognitive impairment. The brain does not like to be starved of oxygen. I was diagnosed by an overnight oximetry. I wore a pulse ox on my finger attached to a small computer that tracked my sat levels all night while I slept. This is ordered by a pulmonologist. The extra oxygen helped me sleep better and wake up more rested.

This sounds so familiar to me. I am doing exactly what your describing when it comes to breathholding. I feel like it happens when I'm really tired especially when I first get up in the morning. It's almost like I'm bearing down and holding my breath. Unintentionally. I described it to my neuro and she diagnosed it as dyspnea on exertion. I posted a thread about it a few days ago. I do it and when I catch myself, I take a deep breath. I bought a pulse oximeter because I wanted to see what my oxygen saturation was performing at while in these episodes.

Thank you Azara. Your kind words really help. I know it's all about perspective.

I am diagnosed with autonomic neuropathy. It comes with many distressing symptoms. It is a topic I do not hear about much on this forum and some of the symptoms are a bit taboo. I am still learning about my illness. You all are teaching me new things everyday. Much of what I experienced is trial and error. I have chased a diagnosis down for 8 years. Now, with a looming trip to Mayo, I may be close. It has been one thing after another with symptoms pyramiding on top of one another as the years have gone by. Probably, the most troubling is my incontinence. I have some bladder control but none of bowel. I know it can be fairly common with my type of neuropathy but it is never discussed. I feel alone. I have seen many specialists and have been through all of the, rather embarrassing I might add, tests. I have tried medications but refused surgery as it was too risky and not guaranteed. For the last 8 years, I have resorted to using adult diapers. It is extremely embarrassing. It bothers me because I read about my condition online but have never encountered anyone like me. But the literature is out there. I know people like me exist. I don't know how common my neuropathy is so I don't know how many people may be out there. I just know I feel like the only one.

On a side note, many health insurance companies cover canes, crutches, walkers, etc. as part of durable medical equipment and considers them a necessity. Medical supply companies will often work with them to get your items paid for. You may need a prescription from your doctor. Just something to check into...

StayAtHomeMom, I got my cane from a medical supply/pharmacy shop not far from my house. My 3 yr old actually picked it out. She has good taste, lol. It cost me like $50, but you can get simpler ones without elaborate patterns on them for less. The shop actually measured me for it and cut it for free. There are some really pretty ones out there for women, too. I have found it useful so far in taking some of the stress off my legs.

I have issues with joint pain in my knees and hips. Walking long distances can be painful. I broke down the other day and bought a walking cane. It's actually rather stylish. Not plain. It has some pretty Asian artwork on it against a faded yellow background. I do however, feel really odd using a cane at my age (34). I'm afraid people will look at me and wonder why someone my age would need such a thing. My wife told me not to worry about it. She said if you need it, use it. Canes can be used for other purposes other than joint pain, I found old threads in this forum from a couple years ago with a few responses where people were using them for support for lightheaded and dizziness to give them some stability. I have autonomic neuropathy and am wondering if my joint pains could be related. Any thoughts or ideas? I'm trying to get used to using my new "stick". I still feel awkward. For those of you who may use one, did you feel the same way?

Does this sound familiar to anyone? I saw my neurologist this morning. She is referring me to a pulmonologist for a Lung function test. I complained that I stop breathing with exertion (physical activity). I bought a pulse oxymeter to track my O2 saturation so I can report back to my doctors. They are interested in what find. I was formerly oxygen dependent at night and used 2.5 Liters / per min. via nasal cannula. I thought it resolved as I was retested and told I could stop using it. But I may be symptomatic again. I don't want to be oxygen dependent. I told my doctor that it happens only after I wake up. My neurologist hopes that pulmonary can shed some light on the situation. She referred me to a group that works in the same hospital she does. This is good because all my records are in one place. So we'll see.

I second to try using a cane. I use one occasionally because I have arthritis in my knees and hips. I get really bad pain when walking long distances and the cane gives me something to lean on when the pain kicks in. Due to the lithium I take for my illness, I am unable to take Motrin as an anti-inflammatory. So i have to rely on Tylenol for pain which doesn't always work. So the cane helps me take the weight off my legs.

Hi Pink. I told them of my autonomic neuropathy a couple times and that I had tachycardia and high blood pressure. I guess they didn't put two and two together because I not only got a local with epi but the gel to stop my gums from bleeding also had epi. So needless to say my body reacted poorly to the double dose causing a potential medical emergency. After I told them about my pulse and BP, they said I should have gone to the ER. Especially with a BP of 150/114.