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-   -   New Member w/ Metabolic Myopathy Lipid Storage Myopathy (https://www.neurotalk.org/new-member-introductions/214722-metabolic-myopathy-lipid-storage-myopathy.html)

Tmkmurphy 01-13-2015 03:13 AM

New Member w/ Metabolic Myopathy Lipid Storage Myopathy
 
Hi,
My name is Tara. I'm a 30 something lawyer in MN with a metabolic myopathy. More specifically, I have a Lipid Storage Myopathy and am very prone to rhabdo. It's painful, frustrating and infuriating all at once. I used to be very active and athletic. Now...

I am looking to meet people here with the same diagnosis so we can trade insight on pain relief, foods to eat, symptom checking, venting etc. I look forward to hopefully finding some others who have the same super rare condition. It would be nice to chat with someone going through the same thing.
Tara

Lara 01-13-2015 03:24 AM

Hello Tara,

It's great to have you here.

I left a message on the other thread but just wanted to post a little of it again here for you.

Metabolic Diseases / Mitochondrial Forum

There is also a search feature here. You can type in keywords and find other posts and threads. Quite a lot of posts came up throughout different forums when I searched - Metabolic Myopathy -

http://neurotalk.psychcentral.com/search.php

take care.

Kitt 01-13-2015 10:30 AM

Welcome Tmkmurphy. :Tip-Hat:

Darlene 01-14-2015 02:23 AM

Great to meet you!!
 
Tara,

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

HudKat 04-14-2016 08:04 AM

Hello Tara
 
Hello Tara,

I'm a 30 something in MN that won the medical lottery too. What are the odds? The doctors are still unsure which type of metabolic myopathy I have, but I'm hoping to get some answers soon. I was at the peak of my physical capabilities when I had some knee pain that never went away and started to spread. Happy to chitchat, vent, whine, or laugh the bad days away.

Kat

Lara 04-14-2016 07:08 PM

Hi Kat,

Welcome to NeuroTalk!

Hopeless 04-15-2016 12:19 AM

WOW !!!

Two NEW members, from the same location, in the same age group, with the same condition, finding NT at the same time.

Now THAT is amazing.

Wishing you both better days.

Rhabdo ??? I hear that is very painful. No personal experience with it I am happy to say.

I hope you both will find lots of help, not just with each other, but from other members, too.

I had to go back and read the two messages a second time with all the coincidences of two NEW people finding NT at the same time. I am just flabbergasted by that. I guess it is a small world after all. :)

For a minute, I thought my poor eyesight was playing tricks on me again and I had read the same post twice instead of two different posts by two different people.

Wishing you both the best and hopefully many new friends here on NT.

Welcome to Tara and Kat.


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