Author Topic: Hi  (Read 7102 times)

Maria3667

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Re: Hi
« Reply #30 on: October 30, 2010, 05:35:14 PM »
Hi Navydad,

Just a hunch: you don't happen to drink coffee, do you??

I get very weird symptoms from the bean, including pain in hands, arms, knees - practically ANY joint in my body. Also upset bowel....

Maybe it's far fetched, but if I don't tell you I'd feel guilty....

Take care!
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Joe S.

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Re: Hi
« Reply #31 on: October 30, 2010, 05:53:13 PM »
Maria3667, you may have a high level of uric acid in your system. Gout and arthritis are the end results over time. High Active tart cherry extract (black cherries) can help reduce the levels of uric acid in your system.
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Kerrikins

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Re: Hi
« Reply #32 on: October 30, 2010, 07:49:50 PM »
Navydad its good to see you but I'm sorry to hear that you are not doing well. I agree with the other posts suggesting another opinion. I hope that something can be done to help.
Kerrikins

season

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Re: Hi
« Reply #33 on: October 30, 2010, 09:12:36 PM »
Navydad.

I wish you were all better.

Maria3667

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Re: Hi
« Reply #34 on: October 31, 2010, 06:25:37 AM »
Maria3667, you may have a high level of uric acid in your system. Gout and arthritis are the end results over time. High Active tart cherry extract (black cherries) can help reduce the levels of uric acid in your system.

@Joe,
Are you sure they are black cherries? When I Google the extract, I only get pictures of red cherries (or are they berries?). Didn't know about the uric acid - thing is, if I lay of the bean, nasty symptoms subside...  ;)
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, thyroid meds, 25mg quetiapine, 10% testosterone. Allergies: nickle, methylisothiazolinone, latex

Carolina

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Re: Hi
« Reply #35 on: October 31, 2010, 08:10:45 AM »
Hey, Navydad,

No fun, angel, no fun at all.

Like everyone else I wish I had a NEW suggestion, but I know that when you can't find help at Mayo, help is hard to come by!

Relief from the pain, cramping and other symptoms is probably the best you can aim for.

I don't know all the things you are taking or have tried.  You list Evoxac and Neurontin on your profile.

But I know you are taking other things and have tried many drugs. 

My last visit to a neurologist was totally disappointing, too.   All of my problems and symptoms were dismissed as part of getting older or the result of disc degeneration.  My SICCA was not addressed AT ALL.

And reading your experiences I realize that even if things get a lot worse, there probably won't be any treatments or cures.

I guess I keep thinking that in another month or so I'll feel better, sleep better, be stronger!   Funny isn't it, how that works?

I had knee surgery in April, and my knee is still very weak and painful, and I thought it was going to just keep getting better and  then be OK.

I know I don't even know about the surgeries you have had on your back and the results of those, I've just seen passing references to them.  And the surgeries on your sinuses, too.

Both types of surgery are discussed in my case, so I always look to you for advice and shared experiences.

If you have the energy and time to spare for us here on this forum, we all really appreciate your comments and opinions.

Take care, angel.  My thought are always with you.

Kisses

Elaine
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Patze

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Re: Hi
« Reply #36 on: October 31, 2010, 08:25:19 AM »
Hi Navydad,

I'm so sorry to hear that you're doing so poorly, but please don't give up on the medical community!  There are other doctors that might have that "piece" of the puzzle that will put this all together for you.

How are you doing today?

Take care my friend and don't forget to keep in touch, okay?

Patze
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Catilee2

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Re: Hi
« Reply #37 on: October 31, 2010, 12:09:24 PM »
Navydad and others with PN,

     There is a conference in Washington DC for both Drs. and patients organized by the Neuropathy Association. It is being held in early Dec.  the web site is www.neuropathy.org. We(my husband & I) are already busy that weekend, so I know we won't be going. maybe someone there has some answers for the wide variety of symptoms and pain levels that occur in SS people as well as other AI disorders.

Catilee 2

aussie mum

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Re: Hi
« Reply #38 on: October 31, 2010, 01:50:18 PM »
Hi Navydad,

We've all been so worried about you! Thanks for posting again.

It must be so frustrating for you, being so unwell and the Dr's seemingly unable to help.
There must be a Dr who can put all the pieces of your medical puzzle together.

Please don't give up, please do as your wife suggested and get looked at again.

Sending gentle hugs from Australia

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Jules48cats

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Re: Hi
« Reply #39 on: October 31, 2010, 04:09:55 PM »
Hi Navydad,
I hate to hear that you are still suffering and in so much pain.  I know its hard but you need to hang in there.   Maybe you should try and find a new neuro or Rheumy.  I agree with you about ER's I try to avoid them too, but if you are in that much pain you should maybe give it a try.   
My husband was not doing well because he has chronic diarrhea.   He was seeing a gastro specialist, but he was losing weight and going 15+ times a day.  Well they referred him to a gastro at Hershey Med and they changed his meds and did some tests and he is gaining weight and hes down to 5 or 6 times a day.  I am so grateful.  We aren't chained to the house (bathroom) anymore. 
Of course I am not suggesting for you to go the Hershey, but it sounds like you have a lot of people from your area maybe they can suggest a good doctor in your area. 
You are in my thoughts and I will send healing thoughts your way.
Jules

Sarah

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Re: Hi
« Reply #40 on: November 01, 2010, 08:05:37 AM »
I am so sorry you are suffering and pray that some solution will come to you.  I have just finished reading the book "The Mindbody Prescription" by Dr. John E. Sarno.  It has some interesting theories on pain.  (I have been suffering for 5 years with extreme permanent nerve pain).  Might I suggest a psychotherapist who can help you cope with the pain?  I have done this and another man with PN in our group,just like yourself, have been helped.  After being bedridden I now function fully and enjoy life again.  Please give it a try - what can you lose?  I was on a great many pills - I only take an occasional baby aspirin now.  I too went to Mayo and so many doctors, I can't even remember their names.  Your body wants to heal itself.