Hi Lovely Jen! I love your new pics! That Baby Boy sure is growing up FAST:) and handsome! I have had some success with my natural approach to writers cramp! Much Love and Happiness <3 Tenee'
HI jen, every day i check my email i think of you as i have the wego page saved : ) I pray that your surgical procedure went well.And that it will be sucesful also. I apolgize for this belated wish , however i have been wanting to write a get well wish for you my fellow dystonian.
Well the big news now is No Nexium with Plavix and I am on both. I hope to be off Nexium with a good report after next EDG. I'm feeling a lot better though, before I knew I had ulcers again, I was trippy on my chest aching/burning. So, being treated for it and getting relief has been tremendous. Wall Street Journal had another article today on the use of Nexium and the likes with Plavix. So, I have people worried for me. My cardiologist said okay for now to be on both. Life is fun and complicated. Thank you for your encouragement.
Jen, you were the first to suggest a possible connection between mitochondrial disease and dystonia to me. I hope you're doing ok and that your testing has lead to some answers for you.
I just had an NCT/EMG yesterday at the Univ of Birmingham in AL, performed by a neuro-muscular disease specialist there. They do not feel dystonia is my problem, thankfully, and instead found neuropathy in my feet and toes from dead/damaged nerves in my calves. She said the muscles in my feet are irritated from the damaged nerve endings, and that's causing the spasms with even just the slightest movement. She has started me on Klonopin to try to calm the muscles down. She also found a low carnitine level, necessary to fuel the mitochondrial cells in my muscles. She feels the deficiency is responsible for the muscle fatigue/weakness when I go up stairs. She has prescribed a carnitine supplement for that. I just wanted you to know how things have turned out for me. I will likely not continue with the dystonia group since I don't really fit here anymore. I am grateful though for the friends I have made here and for all that I have learned.
Be well,
~Connie~
Hi Jen - I've had you on my mind and know your mito eval in Boston is sometime this month. Have you had it yet? Hope you're feeling well these days.
~Connie~
Hi Jen, Just thinking about you and hoping you are doing better. I think about you and your upcoming mito evaluation often, knowing that it is drawing close. Please do let us know how it goes and how you're doing.
Jen~~
Thanks so much for the information - I can't tell you how much I appreciate it. Yes, I will check out the GI group. Mitochondrial disease is something that has never been suggested before and I will certainly look in to that. I see a neuro for post-craniotomy headache control. I mentioned the symptoms to him and asked about dystonia -- he quickly waived aside that idea and said I don't have the symptoms! I knew then he didn't know enough about it. He mentioned maybe an EMG should be done, but I didn't bring it up at the next visit because I knew he isn't the right one for me to be pursuing this with. I do need to see a movement disorder specialist, you're right. If that is going to take a dr referral, I can go thru my PCP. Maybe he will have the resources to help me find one.
I have to say I am SO impressed with all that you are accomplishing, and it's even more impressive in view of the health challenges you have. You are truly inspirational and what a wonderful role model for that beautiful little guy!
Connie
Thank you for sage advice. I will try both substances in cooking. Remarkably, after sticking to the SCD for 3 & 1/2 weeks it has already dramatically changed colitis symptons for the better. Thank you for taking time to research options for me.
Jen, once again you're such an inspiration. Your spotlight with Adrienne was fabulous! I left a comment for readers there, but wanted to touch bases again and tell you once more how much I admire you. We are so lucky to have you here!
Hi Jen,
I just read your spotlight interview and wanted to let you know what an inspiration you are. And your blog is awesome and full of such great information. Just by sharing your story, you are inspiring and teaching. Thank you for that.
Oh and your little boy is A.D.O.R.A.B.L.E!!!
Thank you for sharing a part of yourself with us at WEGO Health!
Hi Jen; My hope is for a person such as yourself to one day find the secret to dystonia and open the door to possiblity's in research for a cure or better treatments. You sound like a wonderful person with alot of potential to do good works.
Welcome Thorns
Thank you so much for your comment. You are an amazing woman who has accomplished so much. I know it can't be easy. I'm sorry to hear about your son. As far as gaining a new perspective because of his condition, I spend a lot of time (too much time) feeling guilty because of the added work dystonia causes my husband and kids. I have only had this for 2yrs and each month I seem to be gaining ground and finding my peace. It gets me down occasionally but I expect that is normal.
Like Lene, I too believe we have so much to gain from God and you will be in my prayers as well. Thanks once more for the comment.
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I just had an NCT/EMG yesterday at the Univ of Birmingham in AL, performed by a neuro-muscular disease specialist there. They do not feel dystonia is my problem, thankfully, and instead found neuropathy in my feet and toes from dead/damaged nerves in my calves. She said the muscles in my feet are irritated from the damaged nerve endings, and that's causing the spasms with even just the slightest movement. She has started me on Klonopin to try to calm the muscles down. She also found a low carnitine level, necessary to fuel the mitochondrial cells in my muscles. She feels the deficiency is responsible for the muscle fatigue/weakness when I go up stairs. She has prescribed a carnitine supplement for that. I just wanted you to know how things have turned out for me. I will likely not continue with the dystonia group since I don't really fit here anymore. I am grateful though for the friends I have made here and for all that I have learned.
Be well,
~Connie~
~Connie~
Peace to you
Glad you liked the tree full of warriors ! ............................................................:)
I'm hoping to fill the empty "twisted" tree with more Dystonia warriors !
Take good care !
Happy New Year !
Grace ... ( twistin in Toronto Canada )
Wishing you all the best!
~Connie~
Such wonderful pictures you have ! A beautiful choclolate brown Lab ! ......:)
I hope all is well with you !
We are having a heavy duty snow storm right now in Toronto Canada !
I would like to wish a "Very Jolly Christmas" to you and yours as well as blessings for the new year ! ( May we all find comfort & hope ) !
Take good care & God bless !
Peace
Grace
Thanks so much for the information - I can't tell you how much I appreciate it. Yes, I will check out the GI group. Mitochondrial disease is something that has never been suggested before and I will certainly look in to that. I see a neuro for post-craniotomy headache control. I mentioned the symptoms to him and asked about dystonia -- he quickly waived aside that idea and said I don't have the symptoms! I knew then he didn't know enough about it. He mentioned maybe an EMG should be done, but I didn't bring it up at the next visit because I knew he isn't the right one for me to be pursuing this with. I do need to see a movement disorder specialist, you're right. If that is going to take a dr referral, I can go thru my PCP. Maybe he will have the resources to help me find one.
I have to say I am SO impressed with all that you are accomplishing, and it's even more impressive in view of the health challenges you have. You are truly inspirational and what a wonderful role model for that beautiful little guy!
Connie
Thank you for sage advice. I will try both substances in cooking. Remarkably, after sticking to the SCD for 3 & 1/2 weeks it has already dramatically changed colitis symptons for the better. Thank you for taking time to research options for me.
I just read your spotlight interview and wanted to let you know what an inspiration you are. And your blog is awesome and full of such great information. Just by sharing your story, you are inspiring and teaching. Thank you for that.
Oh and your little boy is A.D.O.R.A.B.L.E!!!
Thank you for sharing a part of yourself with us at WEGO Health!
I have been an admirer of you since discovering your website. You are a remarkable young lady and I wish you and your family all the best.
Robert
Welcome Thorns
Like Lene, I too believe we have so much to gain from God and you will be in my prayers as well. Thanks once more for the comment.
~Becky
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