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Old 04-30-2011, 02:42 PM   #1
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Doc appt Monday

This Monday I finally have an appointment with a MD specialist in Orange California. I sure hope she can figure which kind of MD I have, or at least help me learn what I am suppose to be doing and not doing. It is a bit confusing not knowing how much exercise I am suppose to be doing. Not that I can really exercise at all, but I need to understand what pain level is acceptable for general getting around.

Today I did a little walking, and now my legs feel like jello that is in pain.
My ankles are getting stiff along with my back. I hope the stiffness is not something that is going to continue to get worse. I guess time will tell.
I loose my balance when I am trying to stand still, and I often take a few steps backwards. The backwards stepping thing kinda makes me laugh, it catches me off guard. I am just trying to stand and then I go backwards.

 
Old 04-30-2011, 04:45 PM   #2
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Re: Doc appt Monday

Can you stand on your heels? If not, I believe I can explain why you take steps backwards unexpectedly.....

Your tibialis muscles (shins) are getting weak. Healthy people control their forward-backward balance by adjusting the up-down angle of the foot subconsciously. Pull the toes up, you lean forward. Push the toes down, you lean backwards. If you cannot lift your toes, you will have a tendency to start tilting backwards requiring you to take a step back (or fall over like a cut tree).

I have this problem. My calves on the other hand are not so bad so I rarely tilt forward. But I always have to catch myself because I start to tilt backwards.

I am Mark, by the way. I'm 50 with LGMD (Limb-Girdle MD).

Last edited by michigani; 05-02-2011 at 10:43 AM. Reason: spelling

 
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Old 04-30-2011, 05:24 PM   #3
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Re: Doc appt Monday

Hi Mark,
Thank you for your reply. I have read a few of your postings. Sorry that you are not doing too good either.
I tried standing on my heels. I can't do it without leaning my torso completely forward, otherwise I start to fall. When I went to a neurologist (who said return in 3 months) he had me try to walk on my heels, I took about 3 steps forward and about 5 or so backwards. I have tried over and over to go forward without going backwards, and it doesn't work (I thought I would practice to get better).

Your theory is interesting about why I go backwards when I am trying to stand still or walk forward. I would guess you are correct. My calves have always been really strong and large and now they are really starting to atrophy. They look about the same size, but I can't make a firm muscle anymore, it is more like mushy fat.

I have been complaining to my primary doc for quite few years about my legs hurting, and she thought it was just bursitis, but the MRI proved that incorrect.

Finally I decided to go to specialist because my pain and walking limitations. I am glad I went to specialist, since they have finally directed me to the kind of doctor I need. I couldn't believe the neurologist wanted me to return in 3 months, even though he said I have some form of MD. I thought he must be crazy, I am in so much pain and I can only take short steps, and I have no energy. The Rheumatologist my primary sent me to said to contact the MDA, so I did.

I am not looking forward to whatever the future holds with this illness, but at least I finally have some validation as to what is wrong with me. My brother said since my pain isn't bone and isn't muscle it must be nerves, and nerve pain isn't real, so I just need to keep going. This was prior to 2 docs saying I have MD, needless to say I haven't told my brother that I have MD, he just doesn't understand pain, or that I do keep going.

I am 48 and my mothers uncle had some form of MD. She lost contact with him after she married and had a home full of kids, but she remembers that he didn't realize he had anything seriously wrong until he was taking a bath and couldn't get out of the tub. This was in the '60s, so I am guessing it was prior to a lot of info came out on MD.

Thank you again for your reply.

Terry

Last edited by Greetings; 04-30-2011 at 05:25 PM.

 
Old 04-30-2011, 06:36 PM   #4
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Re: Doc appt Monday

Mark,

My legs are in so much pain that I did not even notice how sore my shins are. I just noticed that I was subconsciously rubbing them to try and relieve the pain. Then it hit me, Hey I am rubbing my shins, and they are really sore. Mark must be correct I have weak shins.

Last edited by Greetings; 04-30-2011 at 06:36 PM.

 
Old 05-02-2011, 10:51 AM   #5
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Re: Doc appt Monday

Terry,

Research this type of MD: Hereditary Inclusion Body Myopathy
My doctor suspected it (HIBM) for a while but the biopsy results ruled it out. HIBM is dominant inheritance meaning if a parent or grandparent had it, you have a 50-50 chance of having it.

You may also want to look into some of the Distal type Muscular Dystrophies.

Distal = Farther away from the torso (calves, feet, hands, etc)
Proximal = Near the torso (hips, shoulders, trunk, etc)

Best of luck with your diagnosis.

Mark

Last edited by michigani; 05-02-2011 at 10:53 AM.

 
Old 05-02-2011, 08:32 PM   #6
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Re: Doc appt Monday

Mark,

Thank you for your kind suggestions. I will research them.

Today I went to UCI (University California Irvine) for preliminary stuff. Doc isn't sure what I have, said that I need to come back for a bunch of testing. Don't have those appts yet because the office was empty of workers by the time they got to me. Hope to have them soon.

I keep hoping they will decide it is something from my fall a few years ago, and not really MD. What ever they find out, just knowing what it is will be a benefit, so I can figure how to deal with it.

Terry

 
Old 05-02-2011, 08:38 PM   #7
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Re: Doc appt Monday

I did not think my first post was submitted, so I re-posted, and then noticed my other post did post. Are we confused yet...

Last edited by Greetings; 05-02-2011 at 08:40 PM. Reason: duplicate post

 
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Old 05-04-2011, 08:47 AM   #8
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Re: Doc appt Monday

Yup, very confused :-)

Terry,

I am sorry you have to go through all of this, I don't really have anything encouraging to say other than, post here, there are a lot of people who have some very good inputs, we comfort each other when we are down, and we just let each other vent. I do hope and pray that you do not have any form of MD and that it is from the fall you mentioned.

Hugs

P

Btw never doubt anything Mark has to say they don't come much smarter than him :-)

 
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Old 05-04-2011, 11:33 AM   #9
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Re: Doc appt Monday

LOL !!!!! Actually, I've met a few !

 
Old 05-04-2011, 06:45 PM   #10
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Re: Doc appt Monday

My standard advise to people when I give them a compliment like that is "Take it and run with it, you never know when you will get another" :-)

Last edited by NP74; 05-04-2011 at 06:45 PM. Reason: typo

 
Old 05-04-2011, 08:29 PM   #11
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Re: Doc appt Monday

P (NP74),

Thanks for your thoughts. I have read quite a few of Marks postings, and he does seem to be pretty up on things.

I have had to deal with other problems, but MD is new to me and I don't know much about it.

I have the nerve conduction testing scheduled for the 16 of this month. I hope I can relax, when the docs wanted to do it for carpal tunnel I was so tense they couldn't do it. All I saw was NEEDLES and got really scared!

 
Old 05-04-2011, 08:30 PM   #12
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Re: Doc appt Monday

Mark,
this is for you
: )

 
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