potsgirl

I think that Medicare will provide some funding for home care, but don't quote me. The best bet is to call Medicare to find out what that individual's plan is, and see what they say and would your friend would need to do to put it into place. Going directly to the source is your best option. I call Medicare once in a while and they're been very helpful on what's covered and what isn't. Your friend could also go online to Medicare.gov with his mother's Medicare number and look up coverage options. She may need to set up an account first. Hope this helps a little. You've probably already done it by now... I'm sending positive thoughts to you, your friend, and your friend's mother.

Hi Jonathan~ You have to be responsible for your own health. This is not your partner's decision, but YOURS. I know several people who have gotten a script from their doctors for a wheelchair to be used when they just can't manage on their own, during flare-ups or just for everyday needs. You need to stay as active as possible, but when you need a wheelchair, it'll be there for you. Better than fainting in the middle of shopping. Take care, Jana

My doctor prescribed one for me, and I got it at no expense. It's for those times when I'm in a really bad phase and can't get outside the house without one. So, it's definitely worth asking your doctor about and seeing if you can get a script. I had mine in two days! I hardly use it, but it's there when I really need it. Cheers, Jana

Caterpilly~ It almost sounds like you might have mono or something like that. Have you been checked?

I agree with Jan. I always get a copy of my blood test results, and usually there are a couple numbers that are flagged as 'abnormal'. Most of mine are just a little off, and my doctor says they're not off enough to worry about. Your blood results can vary on any given day or time of day. It worries me that your PCP can't give you feedback on this. They should be familiar with blood testing. Where did you have the blood work done - who ordered it for you? They should be able to give you an answer. Either way, I'd follow up. It'll probably just take a phone call. Let us know what you find out, and good luck.

TLD: I just had this test two weeks ago to rule out large fiber neuropathy since I was just diagnosed with small fiber neuropathy. I think it's a useful test, but I guess by now you've had it done! How did it go and what did they find out? Bev Ray, Do you have small fiber neuropathy? Cheers, Jana

Hi Lina, Yes, I get it too. Usually at least once a day. I agree with pat57, low oxygen caused by a reduction in blood flow to the brain. Kinda freaky,though.

Yes! About one day a week or so I have what I call a 'bed day'. I get up around 6:30-7 am, stay up until 11 or right after lunch, and then nap for a couple hours. I come downstairs long enough to eat something, then it's back to bed. I do read for a couple of hours while I'm in bed, but other than that, I'm sleeping. It's the only thing that's comfortable when I'm dealing with a lot of pain and too much fatigue. You are not alone!

Thankful, Thank you for the kind wishes!

Thanks for your answer, sugartwin. McBlonde, I've heard that it can raise your BP, which I'm hoping it does, because I have OI.

I just started on 50 mg of Lyrica last night, and then took another one this morning. They have me on a dosing schedule to slowly bring me up in dosage until I get (or IF I get to) 300 mg a day. I'm taking it for small fiber neuropathy. Last night I slept a long time, and didn't wake up once. This morning I felt drunk/drugged and could hardly walk around. What experiences have others had on this drug? I think so far I like my Percocet better! We'll see how it goes over the next several days, but I didn't tolerate it well before. Thanks for any answers! Jana

Ken, Wow! What a weird mess. I'm glad you found out what the problem was, and I hope they discipline that receptionist! Yay, though, that it sounds like you're finally going to make progress and get in. Dealing with doctors is absolutely exhausting sometimes. Kudos to you for sticking with it, and please let us know what you find out. Which Mayo are you headed for? Cheers, Jana

CONGRATULATIONS on quitting smoking! Keep it up, and your body should balance itself out eventually. Way to go!

Ken, Your situation really baffles me. I know that at the Scottsdale location they're scheduling at the end of October, beginning of November. Are you willing to travel? I don't know where you live....I called last Thursday, they had a cancellation for Monday, and I just had a consult yesterday afternoon. Try Dr. Goodman at the Mayo Clinic in Scottsdale, AZ. Do you need a referral? Dr. G is a neurologist, but also specializes in POTS/autonomic dysfunction and is great!

Example to clarify.....Wow, I guess I created a real mess here. All of the Mayo Clinics, including Jacksonville, accepts Medicare. They are not contracted with Medicare, but will file for you. By not contracting with Medicare, it means that Mayo does not accept the allowable amount that Medicare pays for any service. They can charge up to 15% more for the procedure for which Medicare deems allowable, and you need to pay the usual difference (usually 20%) plus that extra 15% fee. It also makes a difference if you have additional, or supplemental insurance with your Medicare plan. I do not. So, for me, the scenario would be this: Fee: $115 (the 15% extra Medicare charges from what Medicare deems allowable) Medicare allowance for this service: $100 Medicare pays 80% of $100: $80 YOU PAY: $20 (difference between Medicare's $80 to the $100 allowable) PLUS the extra $15.00 Mayo is allowed to charge above and beyond... SO, in my case, I would end of paying $35.00 for a service that cost $115.00 initially. To extrapolate, on a $1,150 bill, I would eventually pay $350. Not great, but I think it's worth the extra cost if you have a good doc there. If you have supplemental insurance, it would probably cover the 20% difference (in my example) so you would end up only paying the 15% additional fee between Medicare's allowance and Mayo's fee. Please note: I got this example and information directly from Mayo Clinic's website. I went to Scottsdale's page, typed in 'insurance', clicked on that, and then clicked on 'Medicare'. It explains this all in detail. If in doubt, call their billing office, but this is how it's always worked for me. Hope this helps clarify things! Cheers.

About 5 months ago I started having hot flares in my feet. Gradually the pain went into my right hand, then my left, then both feet were affected. The pain has gradually become worse to the point where I can't even carry my coffee cup in the morning and this pain is constant. I have flares where I can hardly stand the pain, and I've been taking Percocet for it, which just takes the edge off. I went to a pain clinic yesterday, and although I had problems with Lyrica before, I'm giving it another shot, starting tonight. I also saw my neurologist at Mayo/Scottsdale yesterday afternoon, and it's very likely I have small fiber neuropathy (sfn). They'll be doing testing for it and for a possible underlying cause in a couple of weeks. It tends to be progressive, and you treat the pain/symptoms. My pain bothers me at night, too. So...I try to not 'do too much' on any given day because it makes the pain worse. I try really hard to get a couple of weeks in a week, and do some ab work. I was only taking the Percocet when my pain became unbearable, but now am keeping on a small dose around the clock so my pain doesn't get too out of control. Avoidance of things you know might make your pain worse, getting your pain under control so you can continue to get some exercise in, eating right, getting enough sleep and trying to avoid as much stress as possible helps me. Also, moist heat is good. Heating pads can also help. I would try a pain clinic if your PCP is not knowledgeable in that area. Our lives are tough enough without adding all of this pain! Do what you can to help yourself. And see if they can try to find a triggering cause to your pain, and keep a journal. Good luck!

An insurance update for ALL Mayo Clinics....They DO accept Medicare just like they used to. The insurance department told me that a rumor started about 8 months ago that they no longer accepted Medicare, but it is NOT true. I'm off to an appointment there today, but wanted to spread the word. Hope this clarifies the situation! Cheers, Jana

I certainly thing that stress can exacerbate your problems. That has proven true for those of us who are ill and those of us who are not. Have you ever tried meditation or relaxation when you can carve out a little time for yourself? Are you taking anything for anxiety? SSRI's have proven very helpful for most of us with autonomic dysfunction. Hope you're feeling better soon!

You may want to do a 'search' for compression hose/garments on the site because they've been discussed a lot before. Usually the best ones are to the waist, and you can get them with an open toe to let some air in. They are pretty hot, if you get ones from the medical supply store. My cardiologist wrote me a prescription for two pairs, so my insurance would pay for them. They measure you and get the perfect fit just for you. Other options include Spanx or other garments meant to 'hold you in', and you can get these in various lengths. What works for one person might not be the best option for you. Compression hose seem to really help quite a few on this forum, but unfortunately didn't do much for me. Good luck. If you want the brand and specifics of the kind I wore, just PM me. Jana

Hi Vlinder, I think we probably still have t-shirts available, but you need to write to one of the administrators to find out (MightyMouse, Sunfish, Rachel, Flop). They do cost about $10-15, and I'm not sure if they are able to ship them out of the country yet. You would probably need to pay the appropriate postage costs. Welcome to the Forum, it's a great place for support and to find information. Make sure you check out the home page - it has a lot of good information about doctors, symptoms, types of dysautonomia, etc. Take care, Jana

Hi Crow~ I have odd sleeping patterns too, but mine are switched around from yours. I go up to bed at 5-5:30 pm, read, and fall asleep between 6:30 to 7:30pm. I get this weird 'sick' feeling, like I hit a wall, and just can't stay up any longer. Then I'm tossing and turning until I get up between 5:30 - 6:30am (sometimes as early as 4:30, ugh). I would love to be able to stay up like I used to, until 10 pm or so, but I just can't do it. Really puts a damper on any social life....Then I lie down and try to take an hour nap after lunch. Re the computer, yes, that's definitely stimulating your brain, making it harder to fall asleep. Try to get off the computer a couple of hours before bed and read or take a hot bath. Good luck, J

Hey Garrett~ No one can tell you if you can drink 'safely' or not, it all depends on YOUR body and how you react to alcohol. I know some people on the Forum feel better if they have a drink or two. I can have a drink every so often and it doesn't bother me too much. If you do try, take it slow and match your alcohol to your water/Gatorade/etc. Only then will you know what will work for you. Good luck.

Flop, great answer! I also get dizzy after sneezing, especially after I do it a couple of times in a row - darn allergies! Sometimes I get it when I hiccup, too. And when I say hiccup, these puppies come out of the blue, are loud and make my whole body jump. Any other hiccupers? (Is that even a word?)

Hola Michael~ I'm sorry, but your medical issues are out of my range of knowledge. I do want to welcome you to the Forum, though, and to all the support and information you can find here. Perhaps you could try to PM Maxine if you can figure out how....I would guess there are a few others out there with similar issues to yours, too. I can relate, in a way....what they think is causing my POTS and small fiber neuropathy and heart issues is a rare disease, too. Take care of yourself and let us know how you're doing! Cheers, Jana

May I ask how old you are? I had never had PMS/hormonal issues before either, until they struck me out of the blue a couple of months ago. Very irritable, horrible cramps, nausea, my breasts became very hard and painful, too. Are you on birth control? Sometimes changing that can also help. My GYN has me taking pills for 3 months straight to help with these symptoms, only having a period every third month, and it seems to be helping. I'm not sure about your other issues, but wish you luck!