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Other Platelet Disorders

TOPIC: Mistrust of doctors

Mistrust of doctors 3 years 10 months ago #53583

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Melinda:

I took Alpha Lipoic Acid years ago when I was first diagnosed with peripheral neuropathy. I don't know if you remember, but it started one day when I got into the shower and lasted a few months, 24/7. It was really bad at first, then calmed down. It really only stirs up now when I'm exposed to heat or cold. I never really thought that ALA was the reason it subsided, but I guess you never know.

Aoi:

Which supplements do you take? I take a load of them too.

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Mistrust of doctors 3 years 10 months ago #53591

  • Melinda
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I remember when that happened to you Sandi. I'm glad yours only acts up with exposure to heat or cold. My feet get horrendous with cold - but my feet & lowers legs are constant, hands aren't very bad thankfully. Alpha Lipoic is helping very minutely and so is acupuncture - but very minutely is better than not at all!

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Mistrust of doctors 3 years 10 months ago #53594

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well, it won't hurt to keep taking it then. Maybe it will help more in the long run.

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Mistrust of doctors 3 years 10 months ago #53596

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I take what my blood work shows me to be deficient in. That currently includes iron, folate, and vitamins B12 and D. I also take vitamin C because research shows that high doses are helpful for people with the connective tissue disorder I have, and a probiotic because my digestion is a bit iffy and can probably use the help.

I've not had any reason to try ALA. My neuropathy is intermittent and has to be managed based on the connective tissue troubles, which basically means I just put up with it.

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Mistrust of doctors 3 years 10 months ago #53605

  • Melinda
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I'll keep taking it 2x a day but really there's nothing but mind-boggling drugs to take to try [notice the word "try"] to lessen the pains and I just will not take them, period - nothing is going to work, I've already resigned myself to that.

How are you doing Sandi??

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Mistrust of doctors 3 years 10 months ago #53610

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I agree, the only drugs that work are horrible. They prescribe the same ones for myalgia. I've tried Cymbalta and Lyrica as you know. They were awful. Had to quit. Won't go there again.

I guess I'm a little better every day, but this surgery has been much tougher than the last one was for some reason. Sleeping is impossible. I'm supposed to wear the collar at night but there is no way to get comfortable. I don't sleep at all when I'm wearing it. I started taking it off but then there is only one position that is comfortable and it takes forever to find it. My head has to be level and my head cannot be turned left or right or go up or down. It has to be perfectly straight. I've been wearing my wrist splints and am having trouble finding a spot for my arms that doesn't interfere with my head being moved. Three more weeks until I can drive and it's making me crazy because I don't do well with being dependent. I was born without patience so this is frustrating.

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Mistrust of doctors 3 years 10 months ago #53615

  • Melinda
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Believe me I know the feeling of no patience, my family knows I was born that way too bless their hearts!

I don't know if I could keep my head in the position it needs to be in without that collar on. Bet even sleeping in a recliner almost in the sitting position doesn't work either. Things are more miserable when can't get some sleep.

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Mistrust of doctors 3 years 10 months ago #53618

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The collar doesn't keep my head in the right position. It is loose enough that when I lay down, it keeps my neck straight but my head bends. That hurts. It also pushes on neck muscles that hurt.

Without it, it's very hard to turn over in bed or sit up. The muscles are the problem.

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Mistrust of doctors 3 years 10 months ago #53625

  • Melinda
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Ah, I thought the collar was to keep your neck/head in a certain position. Sure sounds like a pain in the bum!

Now how will you get the muscles strong once again?

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Mistrust of doctors 3 years 10 months ago #53628

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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It does keep your head straight for the most part, but your head can still tilt.

I'm probably going to have PT when this is all over. I have to build up my entire body. Hopefully, there isn't too much damage.

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Mistrust of doctors 3 years 7 months ago #54784

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The spinal surgery didn't help.

At this point, diagnosis is ataxia. Cause to be determined. MRI on Saturday.

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Mistrust of doctors 3 years 7 months ago #54786

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Sorry to hear that. I was hoping for a better outcome for you.
And I hope the MRI sheds some light on what is going on so you can figure out what to do.

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Mistrust of doctors 3 years 7 months ago #54788

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
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  • Thank you received: 2342
I don't quite get the point of another cervical MRI. I had one just before the surgery in March. It shouldn't show anything different unless the surgery failed.

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