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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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@jimhd Jim you made me chuckle with your "We like to be prepared" summation. I know what you mean. I also know what Sunny meant when she mentioned how much of an effort it would be to travel given all the paraphernalia she would have to drag along. Nothing about our lives gets less complicated the older we get or the sicker we get. Linda does have her own set of stuff built up since the neuropathy took hold, but I just thought a picture of her sleeping arrangement would convey the complication factor the best. She is sleeping right now but knowing her she won't mind me showing it.
In the photo below you can see the covers are pulled back to the other side of the bed so you can see what all she sleeps on. You can see the foam cushion I told you about for her apnea, the fan on a small table (right side of photo) for her feet which she sticks out beyond that round cushion you see at the right, and all the various pillows and cushions, blue heating pad, etc. And she has never slept better since this was all put together in the last couple years (her bed looked much more normal before). But imagine trying to set something like this up wherever you are traveling. And just the dragging alone is something else. Thank goodness, in that way at least, she does not travel any more, although I'll deal with it in a heartbeat whenever she decides to travel again. We both really want for her to be able to go up to Hartford to see my mom and family after the pandemic is over, so I am not giving up hope that that will happen. On the other hand I'm having a hard time actually visualizing her "on the road again". We'll see I guess. Best, Hank
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3 ReactionsJim @jimhd I also settled on the ResMed AirFit F20 full face mask. I had used the Dreamware full face and Amara View and both worked well for a few weeks but then I had one of those nights and ripped them both off because I couldn't breathe. Both of the other masks fit under the nostrils and worked well as long as I could breathe through the nostrils. Once my nose plugged up all bets were off. I think that's part of being a "mouth breather" and has something to do with my deviated septum. Although when I mentioned the deviated septum to my sleep medicine doctor, he didn't think it would make any difference.
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1 ReactionOh heavens Jim, your visuals put a smile on my face! Oh my, the medical equipment we have...., which I am very grateful for, does make life interesting to say the least.
What kind of mattress are you sleeping on? The reason I ask is because I 'm told one of the reasons people toss and turn all night when they sleep on spring mattresses is bc of circulation being compromised. If I'm understanding correctly, when we sit or lie on a spring mattress, the springs are tempered to return to their original shape so there will be both the pressure of us sitting /lying on the mattress and counter-pressure of the springs trying to return to the shape they were without something pushing them down. So, our bodies toss and turn trying to get good circulation. That's the "theory".
I have a Swedish Tempur-Pedic mattress w/ an adjustable base. I wake up in the identical position I fall asleep in! 🤗 Yay! Take care! Sunnyflower
Oh Hank, I wish you guys could get a Swedish Tempur-Pedic mattress with an adjustable base. It changed my life. I do however, have to sleep on medical grade sheep skin for my bony parts to prevent pressure sores. Believe me, it works! I think I 've shared that before. Warmest regards, Sunnyflower
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1 Reaction@johnbishop @jesfactsmon @sunnyflower and whoever else reads this conversation
John, I use the air fit 20 nasal cushion mask. I used a full face for many years, but they aren't compatible with a beard. Sunny, I'm pretty sure I kept the mask like yours (I guess that goes without saying, being a moderate hoarder), and I'm going to give it another try.
We have a firm memory mattress, can't remember the brand. It's too firm for me. It hurts my joints and hurts where my scs implant is. I don't have any body fat to cushion everything. So, I have an egg crate foam pad on my side of the bed. It irritates my wife because it makes the mattress too tall for our fitted sheets and mattress cover. But that's nothing compared to the blanket lifter. I've adapted it so it's high enough for my big feet, and I extended the legs that go between the mattresses. The sheet and blankets are draped over it. The top blanket that we use in the winter season is big enough to tuck in the corner, and keeps everything in place. I need to sew an extension on one of the year round blankets. Think about hauling that around and setting it up every night, Hank. I already pack my Bipap, 3 or 4 pillows, multiple pairs of shoes, a bag of medications, 2 dog beds and 2 dogs. It seems like a lot of stuff, but nothing compared to what Linda or Sunny would need. If we need much more, we'll have to drive the Cadillac, which would be fine with me. I like driving it more than any compact - for one thing, there's enough legroom for me to be able to move my feet around. When I drive, I have to move my feet every couple of minutes because of pain. Some of you know what that's about. Thank God for cruise control.
Jim
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2 Reactions@jimhd Jim, I hear you about cruise control. What I can't figure out is how did older people dealt with driving long distances before it came along? I too find it a major pain (literally) to have to keep my foot on the gas pedal, like when you are stuck crawling in a traffic tie-up on the freeway for an hour and twenty minutes, which happened to me on Tuesday on I-40. Ankles hurt, right shin got a shin splint, and I had to start using my left leg for braking. Thank-you, whoever invented CC!
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1 ReactionHank @jesfactsmon - The picture looks pretty close to the zero gravity position on my adjustable base bed. We recently bought a Ghostbed Split California King adjustable base bed (2 TwinXL Frames pushed together). The ZG (zero gravity) position is really comfortable and takes pressure off of the lower back. https://www.ghostbed.com/products/adjustable-base
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1 Reaction@johnbishop I can see what you mean John. Linda is SO finicky though that even if we didn't already have too many beds (including one of those Big $$$ Sleep Numbers that is now in storage) I don't think she would be happy without sticking in a few odd pillows and other accoutrements here and there and god knows what all, and even then it might take her 5 months to get everything "just perfect". I think I'll pass on showing this to her, just in case she might fall in love with it if you know what I mean. 😉 Hank
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1 ReactionI do know what you mean Hank 🙂
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1 Reaction@johnbishop That looks like my adjustable bed also but mine not called the Ghost bed Certainly does take then pressure of your nerves in legs
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