Old 01-08-2010, 01:45 PM #1 (permalink)
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Default its been over a year now

hi, everyone, I don't post often but read the forum almost everyday. I keep hoping to find someone with symptoms the same as mine. I joined the forum over a year ago and have had some progression of my symptoms, but very slow. I have been tested for just about everything, the one test that did come back positive was the one for lyme, I have taken 2 rounds of doxy thus far. The last emg I have had was over 3 years ago and it was negative. I saw my primary care doctor on monday and told him of my progressive numbness in my feet and left hand, he tested my refexes and said they were hyper. He is sending me for another emg but not for als to r/o nueropathy, also ct scan of the hip and spine, I cannot have an mri, as I have titanium in my right hip from a car accident 7 years ago, my entire hip was crushed. now my questions, I know als is not sensory in nature, so I really do not think I have als, nor am I obsessed with having it. I stayed on this forum because I felt comfortable here and also that this is about the greatest, most compassionate people I ever had the fortune to interact with. My symptoms probably go back as far as 5 years, when it first felt like my legs were heavy, it has progressed from numbness in my left toes, to numbness in both feet going up to my ankles. It also feels like the padding under my feet is vanishing, if thats possible. I have cramps in my toes, ankles and if I cough I sometimes get cramps in my abdomen. I have both low vitamin D and magnesium, this has since been corrected, however no change in the cramping, have some twitching, but think it is just related to stress. I also have some numbness in my left hand between my pinky finger and the next one over. My sed rate has been as high as 148, it is now holding at around 40 with 20 mg of prednisone a day. My synptoms are very similiar to kims(zaphoon), was diagnosed with polymyalgia rhhematica but the rhuematologist does not think I have it. My feet feel like the have socks on all the time and that my skin is somehow stretching, they are not swollen and my vitamin b is fine. Just wondering if anyone could me any insight on any of this. Oh, one more thing, whenever my doctor does a test for syphliss it comes back positive, but then when it is repeated with a more sensitive test is comes back negative. My doctor tells me that this a sign of an anti-immune response? I am a type 2 diabetic but right now it is well controlled with oral medications. Anyone have any insight?, thanks margaret
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Old 01-08-2010, 02:54 PM #2 (permalink)
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Default Re: its been over a year now

I know that sometimes people with CMT will describe that sock or glove feeling, not sure if you have that or not.
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Old 01-08-2010, 03:27 PM #3 (permalink)
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Default Re: its been over a year now

what is cmt,? I googled it and did not come up with anything except for country music television, lol. Also wanted to mention, I do not have any weakness that I can tell, I am the care giver for my husband who had a srtoke 3 years ago and I can still lift him, turn and bathe him. When I get up in the morning I am very stiff all over and takes a while to get going, but after that I am pretty active. Tested negative for R.A, also my joints pop, mostly in my ankles, I am a little clumsy lately though probably because my feet are numb. What ever this is it is progressing very slowly, but non the less progressing, thanks margaret
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Old 01-08-2010, 05:17 PM #4 (permalink)
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Default Re: its been over a year now

CMT = Charot-Marie-Tooth disease. Try googling that and you should come up with what Tom was talking about. Margaret, it is very good to hear from you again! You can go to MDA.org and find what they have to say about CMT.

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Old 01-09-2010, 07:18 AM #5 (permalink)
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Default Re: its been over a year now

thanks for the info kim, read up on it and the symptoms do not seem to fit. I found something else when I looked into hip and leg pain, it is called avascular necrosis(AVC). I have numerous plates screws and bolts in my right hip and according to what I read, taking prednisone could cause it, I have been on prednisone for about 9 months now. Funny how something that is supposed to be helping me is probably actually hurting me. My affected leg hurts so much in the late afternoon that I cannot walk on it, now the good hip feels like it is being affected, that coupled with the constant cramping in all my extremities has made me a not so happy camper. I am also tired of being used as a pin cushion. Well I will make the appointment for these tests and see where they lead, thanks margaret
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Old 01-09-2010, 09:40 AM #6 (permalink)
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Default Re: its been over a year now

Margret,

sorry to hear you are not closer to a diagnosed. A false positive syphilis test can be an indication of lupus among other things.
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Old 01-09-2010, 11:26 AM #7 (permalink)
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Default Re: its been over a year now

Margaret,

I hope your doctors are able to determine if the prednisone is causing complications and get you off of it, if that's the case.

As far as being a human pin cushion goes, I hope they can find softer needles!

Kim
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Old 01-09-2010, 01:31 PM #8 (permalink)
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Default Re: its been over a year now

Margaret,

It was good to see you post, but I'm sorry you've still not reached a diagnosis, or gotten better.

As you know, I have no medical training, but I still continue to think that what you describe is autoimmune somehow. Could you get a referral to a really really good rheumatologist near to where you live? Dr Harry Spiera's office could maybe have him suggest someone within reach to you. If you're interested, pm me for the phone number.

Are you being monitored for the prednisone? You should have a bone density scan, and also your eyes checked every few months. Prednisone gets a bad rap sometimes, but its also saved a lot of lives. It needs careful overseeing by your doctor.
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Old 01-12-2010, 07:01 AM #9 (permalink)
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Default Re: its been over a year now

thank you for all of your replies, rose I have been seeing a rheumatologist for about a year, he was the one who upped the prednisone to 60 mg a day and than slowly reduced it. I was down to 5mg and than i had a flare up, everything hurt, put me on 20mg a day, sometimes I try to to get by at 10mg. I will take 20 one day and then 10 the next day. I see my regular doc every month and have blood work done every month, he is the one who is sending me for the ct scan and emg. I went to a retina center a few months back to have my eyes checked when I was experiencing wavy vision, everything came back normal there. I have later found the flashing lights and wavy vision is caused by very low blood sugar, I have been monitoring it closely and have not happenned again. I keep wodering if any of this could be caused by the titanium I have in my right hip and leg. Would not be so concerned about all of this but I have started to have significent pain, can hardly walk in the mornings. It also is not the kind of pain that can be releived by pain medication. It is a shooting type of pain that radiates from my hip to my ankle. I am already on oxycontin and vicodin, but it does not make a dent in the pain. well hoping I can find some answers, took some time off looking for them, got plain tied of doctors appointments, margaret
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Old 01-12-2010, 08:12 AM #10 (permalink)
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Default Re: its been over a year now

Hello Margaret,

Just a quick hello and to let you know I have thought about you and wondered how you were doing. It is too bad still no diagnosed or relief.

Lydia
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