Thread: Limb-girdle Muscular Pain Questions NEW here
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Old 08-14-2012, 04:32 PM   #1
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Question Muscular Pain Questions NEW here

Dave here,

I do not know where to begin, but only what is on my mind at this point of the "Game". Being a white male of 58 years old, I have had "degenerative disc disease" (DDD) for about 35 years now, Stage 3. NO surgery on my spine. I had a Muscle biopsy in my upper leg was negative in 10-2011. Over the 35 years I can not tell you how many EMG's, MRI's, Cat Scans, and blood testing I have had done over the course of the years! And the number of Doctors OMG

I have been told I have Type 2 diabetes, Neuropathy, Fibromyalgia, On-Set of MS (what ever that is), Spinal stenosis in 11 areas, Permanent Nerve Damage in all legs and arms, Right Diaphragm paralyses and had a Diaphragm Placation done on 02-2012, my CPK blood level is 550 and as high as 1043 normal for me (normal level is 50-170), and NOW my "New" Nero (and I like him) thinks that illness has been missed or I have a mix of some, and I MAY that is MAY have Limb-girdle MD.

PS
In 1999 the month of July with in 2 weeks I lost the use of my left arm. I could not even wipe my nose, touch me ear, hold a 16oz drink for very long and curl a 1# weight 5, yes 5 times. I was told it was from C5-C6 area by 2 surgeons and surgery will not help. THAT Made me very mad, so I started my own therapy with my weak left arm. I used rubber bands and 1# weights for a long time. I even used the hand grip unit you hold in your hand until I broke one from over use. My grip test at the hospital was 8#. After a year my grip strength was 51# and I could curl a 10# weight 30 times. Today it is stronger as if I was 25 again.

He ordered the LGMD blood test from Athena Diagnostics. I only have only Medicaid for insurance and on SSD. I got a letter from Athena stating that I owe them $3,618.75 BEFORE the test can be done.. LOL like I have that kind of money. SO the test will not be done, yet being optimistic as I am.

OK, NOW you have a over view of my health. And now for some questions from the GREAT GROUP here!!!!

Now my right arm is weak, standing up straight it is hard to lift my right arm up in front of me with NO weight over 8 times. The Deltoid aches all the time, down the out side of my arm to my thumb. I have been working on getting my strength back as I did with my left arm.

I go the Gym (Planet Fitness) 4-6 times a week and walk on the treadmill 1-2 miles and all types of the Exercise Units they have. I spend at least 2 1/2 hours in the gym. My legs are growing leaps and bounds on strength, I do not use a cane any more!

My upper body is slowly getting better too. Not like my legs, but I am happy.

OK the PAIN QUESTION I have, is important to me. Mind you I have had my share of pain over the years.... OH BOY!

This pain is like none other to me. Let me tell you I have had a bunch of types. This one is in my legs only, upper legs to lower legs. It is a very strange ache pain. Stand back this is going to sound NUTS! It feels not sharp, nor dull, but to the dull area of pain and grainy, yes I said grainy. Some days I can almost taste it in my mouth. OK OK call me crazy! This is why I have not told my Doctor.

I only take pain RX's a few times a week as needed. Pain to me is just another walk in the park.

With LGMD, do you have pain? Yes I know there are many types of LGMD, but do you feel pain and what kind?

IF I do in fact have LGMD, why has my legs improved a bunch. One unit at the gym I sit and use my lower legs to spread them to lift the weight, and the other I squeeze them to lift the weight. My first day on this unit I used 30# I am up to 190#, no typo, 190#. How can this be?

Is it safe to work out with weights (using common sense) If I do have LGMD?

Sorry for being long winded....

I am a fighter.... I will not give up and work my butt off to stay up right!

Give me your thoughts, I will read them all and thank you for them.

Dave Smith

 
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