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Old 03-01-2010, 11:22 AM #1
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Default maybe

You have to check for Gulian Baree. The progression is so rapid that I would think about GBS.
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Old 03-01-2010, 07:41 PM #2
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I am afraid I have to agree with glenntaj in that all the meds you are taking could be causing some of your physical problems.

Have you had medical confirmation of ankyloid spondylosis? I am assuming you are female and it is very rare in females. Have you also been diagnosed with Sjogrens syndrome - it does not usually 'come and go'.

Are you taking Embril, methotrexate and Plaquenil all at the same time? Methotrexate alone nearly did my liver in. It took years to heal. Do you take folic acid right along with it? Taking all three DMARDS at a time is triple-dosing. Occasionally, Rheumys will rx a small dosage of MT with Embril but only in the more serious cases. Please correct me (anyone) if I am wrong about this but these are very serious drugs. I wish I could scratch the DMARD off my list...

Do you have a set of doctors that you use on a regular basis. In any case, are they aware of your med list. I am finding over the years that "less is best". I have a lot of medical problems, but i try to keep the drug list to as much of a minimum as possible.

You mention 'cigarette smoke poisoning and bug spray poisoning'. Are you kidding? I would be way more concerned with the intake of meds and the long list of 'diagnosis' if this was my hx.

I don't mean to sound rude but I only speak out of concern when I say that your priorities should lie in the current state of your existing problems. And, you can tell me to mind my own beeswax...

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Old 03-01-2010, 08:06 PM #3
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Default I've got to agree with Glenntaj and Mere...

I suggest you take a look at ALL the meds you're taking and web up the 'Med One -Full prescribing information' all down the lists! There is a slew of deliberately confusing info about each med BUT common and less common side effects MUST be listed! READ THEM, MEMORIZE THEM, Make a chart on them! You might just be surprised that Med A is working against Med B if not taken properly or simply being taken together in the same human! Why do you think there are soo many meds? Because some don't work for all.
At one time, I was on at least 10 prescribed meds and a slew of supplements ... they did NOT work in concert-not at all.
Keep in mind that meds are created to help us? And they can and do at times, but at other times they come with a cost. Docs don't know the minute details of these things...and they shouldn't but for the most basic of cautions and interactions... often tho? Some don't pay attention or know enuf about your thyroid med affecting your allergy med etc..and on and on.
As for anything neuro for diagnosis? In addition to Liza Jane's lists in the stickies, READ THEM PLEASE! There are two others you should take a peek at before your brain freezes over?
http://www.aafp.org/afp/980215ap/poncelet.html AND..THIS IS ON JUST NEUROPATHY DIAGNOSTICS?
And this: http://neuromuscular.wustl.edu/alfindex.htm Take a peek under N for neuropathy or PN for Peripheral Neuropathy.... Explore the whole universe of what is only a portion of what is Neurologic! We don't easily fit into neat square boxes. Nor should we, as each of us IS different. But this all is squirrelley stuff!
Only thing I've got to ask, is...did you have a bad cold or flu a while before coming down with this stuff? And, were you on antibiotics? If you can't remember? Call your insurance co or your pharmacy about getting copies of your prescription records - that could help you and future docs in getting a diagnosis.
You seem to have a lot of things going on..if and how they mite be related is of no issue now? You have to go thru the whole diagnosis mill for spinal, nerve and immune issues if any to get the ultimate treatment you will need to keep on going. Gotta admit? Your 'list' is longer than mine!
It's not easy? But it can and must be done.. You want your life back, I understand and others here as well? All too well! We're all working on it!
Keep faith and keep your cool in any doc's office...never ever let them 'tell you'? 'IT's ALL IN YOUR HEAD!' It's Not and we've been where you are to varying degrees and understand that well. Just learn all you can about the varied diagnoses and keep any doc on their toes by knowing as much as a mere-non-medical-mortal can..and ASK Key questions...What about this [not treatment-more diagnosis] and work your way down the 'list' I am sure you have rite now? Keep to the BIG ISSUES tho, once you've got a doc you can work with? You can get down to the 'details'.... Keep faith in yourself...You are key to the total equation, and only YOU can know what will 'fit' for your problems. - j
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Old 03-01-2010, 08:26 PM #4
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Perhaps I am a bit harsh... I know it's tough to be ill. The last thing I want to do is increase your stress level. I am concerned about the DMARDS though. They created a terrible mess for me. I have been through them all and Humira (is similar to Embril) works for me with minimal side effect. I have spondylarthropathy and connective tissue disease, so I understand your dilemma in that regard. It just plain hurts without them and costocondritis is the worse!

I am also waiting for lab results. I was diagnosed with small fiber neuropathy through skin biopsy. But the lab studies; it has been going on four weeks now!!! Long enough.

Hope you have a restful night,

Mere.
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Old 03-02-2010, 12:38 PM #5
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the waiting is horrible,, been tehre done that, now i;m left with numb burning hands,, numb legs,, hardly able to walk or use my hands anymore,, this after two years of complaining, and no one listening
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Old 03-02-2010, 09:14 PM #6
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But we are listening...

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Old 03-02-2010, 09:39 PM #7
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Default When I got HIT? I was bad off, as were many others....

While waiting in the ER to be seen? PAIN AND NUMBNESS went from ankles to knees, and from hands to wrists halfway up the elbows. It got worse from there after I was released....w/o any guidance at all. And, very vague follow-up. After admittance to the hospital it got so bad?... I needed both hands to eat while in the hospital...one to hold the hand w/the spoon holding the other hand to get it 'near' the mouth? Needless to say, rice wasn't fun? Soups? Forget it! I acquired a liking for Jello of 'hospital colors' then because I COULD get it into me! At home, basic ventures, such as going to bed, bathroom and even bathing were exhausting at best? BUT That I worked very hard thru PT and plain stubbornness to get over... Be it a spinal or neuro thing that you have? It IS NOT GOING TO BE EASY! For your sake really? I hope it's spinal - why? Because they CAN FIX some things in this quarter! With plain old neuro issues, it can and does get squirrelley. But being a squirrell? Doesn't mean things can't be helped in many ways! Keep that gumption and faith in yourself and who knows? What mite happen? Good things I'm hoping!!!!!!!!!!!! -j
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