I am a 40 year old married father of three girls.I been sick a long time it was just great to get a diagnosis.As far as I know I am the first to get this in my family.
fishing and model trains
chaynie2 replied to tarah1218’s discussion post What type of doctor do you see? in the Primary Carnitine Deficiency support group 12:44pm
I see neurologist that specializes in neuromuscular disorders he also specializes in metabolic disorders.…
chaynie2 gave Kimof3 superhero status 12:34pm
Hey!I hope you had a great holiday. How are you feeling? Any new news? Well I will talk to you later.…
chaynie2 gave debmc a hug 12:30pm
Hope you had a good holiday and things are well. My tendon problems are in my forarms they pop all the…
chaynie2 gave allie21766 a hug 12:25pm
Hey! Hope you had a good holiday talk to you soon. CHRIS…
chaynie2 gave allie21766 a hug 8:57am
Hey girlie what's up! Hope things are well!…
September 2, 2008 4:32pm
I think at the end of october I am going back to work. By then I will be on meds for the hypothyroid I hope it works out ok. I am stronger than when …
August 27, 2008 4:53pm
I now know what is causing my chills and aches I was diagnosed with hypothyroidism but I've been so into the PCD I had forgot about it. The doc …
August 14, 2008 8:32pm
I have found that all the info I got from my PCD freinds about doing exercise seems to be true. I started riding my bicycle to the best of my …
August 3, 2008 9:46pm
I just want to thank all my new friends your caring hearts have made this disorder into something positive. I love the fact of having such …
July 30, 2008 10:52pm
I hope everybody is well or as well to be expected.Well the chills started I think it is my autonomic nervous system. I get chills I sweat more on …
glade this one is done. had a great time but i am paying for it now. hopefully it will be short lived. hope yours was a great one. we are supposed to get around 4 inches this weekend my kids can't wait. they are already praying for a snow day. we just may get a hole lot this year. no money to do a lot of plowing or salting. thats ok i love having them by my side.
Hi Chris..I hope you and your family had a wonderful Thanksgiving Holiday..Enjoy the rest of the holiday weekend..Take care buddy..((((((((((((hugs))))))))))))) Allie
Am glad your biopsy results showed no mito. You must be relieved. I'm still waiting on the prelimary results of mine, 3.5 weeks and counting. Muscle dysfunction is my biggest and most painful problem. I've had spasms as long as I can remember and the muscle imbalance resulted in early onset osteoarthritis e.g. feet and toes denuded of cartilage by age 30. My skeletal muscle doesn't hold my bones in place anymore and the imbalance and resulting torquing is what causes the recurring subluxations and dislocations in my legs, shoulders, arms, spine, pelvis, hips, etc. I also get "rubberband-like slapping" in my joints, which is a kind of tendonitis from the chronic hypertonicity and spasticity. I have permanent contractures in my both shoulders and hips and in my back. Consequently, I can't sit for any length of time. Even a few minutes aggravates my sacroillitis and worsens my pelvic tilt and my scoliosis returns w/a vengence. Some days I can't drive due to the spasticity. And I haven't been able to bend w/my back for over two years now, and must ration how often I bend w/my knees - makes life a real pain. I'm sure you know the feeling.
Hey buddy...how are you...hope you are doing well...I was sick this weekend but doing much better...back at work again...haha...you are in my thoughts my friend...hugs to you allie
i joined that support group. that is where i found a dr. in my area. they also have where you can ask questions. i had one that so far no dr. i have seen has been able to answer but them. they also have confrences where you can go once a year to hear speekers talk about this and you can even ask them general questions. i like this place it is very helpful. glade you found it.
I started having breathing problems back in 1998. The doctors diagnosed it as asthma and i was given every known asthma med there was..In the spring of 2007 my breathing got worse and i got very weak to the point i could not work anymore. I saw a bunch more docs until I ended up at temple university hospital. I found a great pulmonary doc who figured it to be neuromuscular disorder. I then saw a neurologist and after more extensive testing I was diagnosed with primary carnitine deficiency.
I have been sick for a long time abd was finally was diagnosed with primary carnitine deficiency.
I have primary carnitine deficiency and because of it I get hypoglycemic episodes.
I was just diagnosed with hypothyroidism its mild I also have primary carnitine deficiency.
Ive had HBP since I was 25 I am know 40 and on 4 different meds.
