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Posted 7/15/2007 9:35 PM (GMT 0)
does anyone ever experience traveling pain-- some days i have tennis elbow-- some i have bad hands and writst-- my ribs are sore and so is my back and hips-- but it feels like the bones...other days the heels on my feet hurt or the bones on the tops of my feet-- jaw is tight and stiff-- anyone else experience this??
Posted 7/16/2007 12:45 AM (GMT 0)
Zoe---are you kidding me? Go with me here....You are diagnosed with MS but also have transient pain in your joints and bones.....Have you ever had a lyme test done or been evaluated for lyme? I am NOT a doctor, but you sure sound like a candidate for a lyme workup with a qualified physician.

You have-Neuro symptoms, Musculoskeletal symptoms,-- do you have any cardiovascular symptoms like heart racing, heart palpitations, do you experience night sweats?

Go get a second opinion on that MS dx---just my thoughts, take care.
Posted 7/16/2007 11:47 AM (GMT 0)

oh by-- well i do have heart problems -tacocardia and an extra beat which is being further investigated on wed-- along with bowel and bladder stuff and trouble thinking like i used to-- i sortof feel like i have arthistis or carpo-tunnel in my wrists-- they have found a boat load of lesions though-- i actually am goin gto my neuro this week cause of the lyme thing for a test-- he doesn't want to put me on anymore immune modify ing drugs till they rule out lyme-- when i was on copaxone and steroids-- ok yes the amount of lesions decreased but i felt way worse and pain started-- they called it steroid poisoning-- i am not sure--we'll see-- i know lyme testing can be innaccurate but i am gonna get to the bottom of this so i have the proper treatment--wheni was diagnosed with ms iwas numb and tingly from head to toe with chest pain but no other pain--thank you-- no night sweats this time but i have had them and chalked them up to anxiety i would wake up ina pool of sweat with my heart racing-- i an an anxious person and have been treated sooooo long for anxiety and mental stuff but hey maybe it wasn't

wish me luck on getting the correct dx

Hugs Hope and Peace

Zoe Butterfly

Posted 7/16/2007 1:02 PM (GMT 0)
Hey Zoe, Oh my indeed.

We also chalked up my husband's night sweats to anxiety and stress-silly how we make excuses for health issues.

My 15 yr old also has lyme and coinfections and one of her biggest symptoms is anxiety/panic attacks and other neuro/psychiatric symptoms.

I think it is great you have a neuro who will explore this with you. You might want to go to www.ilads.org  This is the site of the International Lyme and Associated Diseases Society. They have lots of general info on lyme. You must understand that there is a depth of misunderstanding about symptoms, diagnosis and treatment of lyme in the general medical establishment that is utterly frightening.

If you will have testing done---please have it done at Igenex labs (MDL labs is also, ok). Lyme testing is not accurate, true, but these labs are the best---test for more strains and for more antibody proteins.

My husband was dx'd with MS in 2004. He has been in lyme treatment for 17 months and doing much better----great, in fact.

Take care!

Posted 7/16/2007 2:12 PM (GMT 0)
what docotor eventually tested your family correctly adn treated them for lyme-- i do not live by any lime specialists but need help-- i don't want my tests being sent to quest labs
Posted 7/16/2007 4:45 PM (GMT 0)
Two of my family members are treated by a doc in Ct. and one in Wisc. You can post for help finding a doctor on this forum in the Lyme disease sub forum. Also there is a special find a doctor section on www.lymenet.org. Just explain your situation and where you need a doc and someone will be in touch.

Hope this helps
Posted 7/16/2007 6:45 PM (GMT 0)
thank you everyone for the info-- i am gonna ask my doc to send my samples to the lab in cali-- (more like insist) i will charge it for now since my ins only covers labs done at quest-- is it possible to have both lyme and ms?  i am having lots of traveling pain today-- and my eyes feel funny-- thank goodness i am starting on this testing or consulting tomorrow-- i just want to get better and i don't want to be given drugs that hurt me--

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