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Nerve biopsy test: Is it done by a neurologist or rheumatologist?
What kind of doctor do I see for the nerve biopsy test? My PCP sent me to a rheumatologist for a diagnosis. She feels it is fibromyalgia but prior doctor in Wash. state said it is neuropathy. She won't arrange for the biopsy. Which kind of doctor can finally give me a diagnosis or is she right? All she is offering is amitriptyline for pain. I do take norco too, but my PCP would like me to get off that. I need advice.
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@jesfactsmon
I had the overnight sleep study. Unfortunately there wasn't enough sleep to study the first night. I couldn't go to sleep with all of the wires and knowing I was on camera. The second try gave enough data to diagnose apnea. When I told my mom, she said that when we were on road trips and I was asleep, she would wonder sometimes if I would start breathing again. I used a cpap for around 15 years, then had a follow-up study and was switched to a Bipap. I'd always used a full face mask, but because of my beard it was almost impossible to get a good seal. Now I have a nasal cushion which is much better.
I went through a period when I'd be awakened by a panic attack. I had to take off the mask and prop myself up with pillows and ride it out in various ways. I'd feel like my breathing was slowing down and about to stop. Death felt imminent. Feeling smothered. Those attacks are very real and very unpleasant. I had one at around midnight once, with 100 miles still ahead to get home. I had to stop and get a motel room. One thing I learned that night is only something like a panic attack will ever get me inside that nasty motel again.
I've been thinking about trying a wedge under my legs - a suggestion from my therapist to ease the pain. I don't think it would work because I've put pillows under my legs and the pain was worse. It would be interesting to compare the readings on my Bipap app if I elevated my head. Before I invest in anything I might try adding a couple of pillows to the 2 I already use. I sleep on my side as a rule, for a couple of reasons. The air from my Bipap blows on my wife if I don't aim it away from her. I've been losing weight lately and the scs hurts a bit when I lie on my back - not enough cushion for it. At 6'3" and 150lbs, I'm becoming as skinny as I was in high school. I imagine I'll quit losing when summer is over and I don't have as much physical labor. Then I'll be back to cutting out snacks and desserts.
Thanks for the link. I'll try to remember to look at it after some sleep.
Jim
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2 Reactions@jimhd Yeah, the wedge doesn't work if you sleep on your side as it bends you in a way that is not comfortable (nor too good for you either). Linda started having to always sleep on her back after her mastectomy so this was not an issue for her. So by the elevation, whatever was going on in her throat that caused the apnea was changed enough by the positional change of her head and neck to disengage that mechanical issue. Like I said, it seemed like a miracle. I remember, just like your mother did to you, listening to Linda stop breathing for what seemed like a full 90 seconds or more sometimes, and it was kind of scary. And she would usually wake up every morning and say, "I feel like I didn't get any sleep last night". If we had known just how dangerous apnea can be we would have taken action I am sure, but we both minimized it for years. Then, about 20 years ago she started with the breathe-rite strips and that seemed to help somewhat so she did that for a long time. We knew about sleep analysis but Linda is so hyper she would not do that as she knew she would not sleep in that situation, or believed she wouldn't. I'll tell you, she is so grateful to be able to get a decent night's sleep now, and so am I.
I'm sorry to hear about your panic attacks. They sound awful! Linda gets one every so often (once a year?), usually out of a deep sleep, triggered by a very vivid nightmare, and it's something to witness. I basically have to sit and hold her for about 5 minutes before she begins to calm down. How horrid to not feel like you can't breathe during this. Now that would make ME panic!
Hope you have a peaceful night tonight. All my best, Hank
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3 Reactions@jimhd Hi Jim, Just read your problems with apnea, and I am so sorry about it. Since I really know nothing about Apnea, I cannot contribute much, but something did come to mind. I have been using a product for sinus headaches and sinuses dripping down my throat in my sleep, for easily 15 years. It is an herbal pill, and it really just clears your nose and throat if any of your issues come from your sinuses. The product is sold by Natures Sunshine and it is called "Seasonal Allergy." It was formerly called ALJ, and you may see it as ALJ in older bottles of it. Since using it, I stopped all steroid dose packs, steroid nasal sprays, and all gasping in my sleep, and trying to catch my breath. The stuff has been fabulous, and is on line for usually about $20.00 dollars a bottle. It is just herbs, such as fennel, horseradish root, etc. I have recommended it to a few people who have even have had sinus surgery unsuccessfully, and now, these people have no more sinus problems. Maybe this could help you? Maybe give it a try. Love to you, Lori Renee
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1 ReactionDear Jim, HEAVENS TO MURGATROYD!! You poor thing! I can relate to your CPAP experiences. And the overnight study. But I think I have good news for you, at least it has been excellent news for me. There is a newer face mask out, which is not really a mask at all. It is called Dreamwear C-PAP Mask made by Philips. I wore nasal pillows forever after I found myself suffocating in a full mask. I liked nasal pillows but this newer dreamwear mask is unbelievable! I love it and that is a gross understatement!! You must go in and get fitted for it and it can be a teeny bit of a struggle to learn how to use and get on easily at first like any new thing, but it is the best thing I have ever found. Now, to me, it is super easy to get on. It's the softest thing I ever felt. the suction of your own inhalation through your nose is what makes the seal and the seal stays. I am so grateful I found this and I hope you get a chance to try it out and that you love it as much as I do too. There is very little on your face.
Yes the panic attack feeling is your autonomic nervous system being starved of air from what I'm told. Your heart can beat really fast with that right! Oh that feeling of panic is terrible!
Jim, I am going to hope and pray you can give this a try and that you find relief. There's nothing like a good night sleep and believe me I know because I rarely get one but it's for other reasons such as pain.
Take good care and know that I'm on your side and will be thinking about and praying for you. Many blessings, Sunny
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2 Reactions@jesfactsmon
Surgery just made me breathe better.
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1 Reaction@sunnyflower
Thanks for the mask recommendation. I'll look into it. I'm not sure how soon I can switch masks, thanks to Medicare guidelines.
I sleep well for the most part. I feel best if I can get 9 or 10 hours. I was sleeping 10 or 11 hours, but my sleep doctor told me to cut it back to 9, and no naps.
Jim
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3 Reactions"HEAVENS TO MURGATROYD" we have a Snagglepus fan in our midst! I watched a ton of cartoons in the early sixties too Sunny. Fun to hear the expression again, it's been a long time. Well, gotta go now. "EXIT, STAGE LEFT." 😀
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3 ReactionsHey Jim, if you're able to pay for it yourself, I would do it. But, at minimum and before that, if your pulmonologist refers you to the pap and accessories company your insurance covers, (ours is APRIA Healthcare), he/she can order a fitting (by appointment) of the Dreamwear mask which you need anyway. The fitting is done by a respiratory therapist or resp tech. Then you can get to know the product and which size is best. Both the soft area (cushion) that sits up against your nostrils (one hole for both nostrils, so soft and pliable you won't believe it!) , and the frame the cushion is attached to, have sizes. So you need to know your size for both pieces which you will learn at your appointment. I think you can get them on Amazon but need to really know what you want and need. You can get the referral and the fitting should be covered if you tell your doc that what you're using is problematic.
I really hope that at minimum, you get the fitting and can experience the product.
Let me know! All the best, Sunny. 😊
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3 ReactionsCareful Hank, we're dating ourselves! I could never remember if it was exit stage left or stage right. Sunny
@sunnyflower I looked online at the dream wear mask you mentioned. It's one of several that I tried at my last fitting, and one of the two finalists that I brought home. I found that the air fit 20 suited me best. The mask issue is complicated by my also having to wear a chin strap to keep my mouth closed - theoretically. I have finally found one that does a pretty good job.
One important consideration for me is having gear that will stay in place when I move around. Right now I'm wearing the chin strap over the nasal mask headgear. It really does well stabilizing the mask.
As you say, we all have our various pieces of medical equipment. We have a corner of the garage dedicated to crutches, walkers, walking boots, toilet seat extenders, ice machine, and sundry braces. We like to be prepared.
Jim
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