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Post by joannern on Nov 16, 2009 8:27:18 GMT -5
Hi all. I have no more news yet. I am still experieincing the cold white numb foot when I lay down. Hard to sleep once the Ambien wears off. I get 4 decent hours and then it goes down hill. I see the vascular surgeon tomorrow. I have a host of ? to ask. I am still awaiting word from a stem cell study in Ohio. They should have received my arteriorgram on Friday and sent an email saying they would be in touch this week. I am trying to live as normal a life as I can while I wait but I am mighty tired with so little sleep. Please keep those prayers and positive thoughts coming. Will post more news when I have it. Thanks to all. Joanne
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Post by steve201 on Nov 16, 2009 9:03:00 GMT -5
Joanne..
keep positive...keep focused....and I'll keep prayers going your way...
Steve
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lucci
New Member
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Post by lucci on Nov 16, 2009 10:19:40 GMT -5
Joanne,
I think of you everyday and am praying very hard that all works out for you. If you are very anxious, maybe your Dr. could give you a low dose ativan or zanax just to cut the edge. Just a thought!
We are here for you, Lucci
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Post by kathsherman on Nov 16, 2009 10:53:55 GMT -5
Joanne, Still sending positive thoughts and well wishes..... kathleen xo
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Peggy
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Post by Peggy on Nov 16, 2009 15:23:08 GMT -5
I am so, so sorry about what you are having to go through. I have peripheral neuropathy of my hands and feet. This was how my sclero started. First they tingled and then they went numb. I have numbness up to my knees and have muscle damage. I have conintual muscle pain in my legs and arms.
Is this from sclero? How does something like this happen or what causes it? Did you have tingling and some numbing before or just the raynauds? Is this something that can happen to me too with my already having the neuropathy?
I so hope you are able to get some answers. It looks like you are doing a fantastic job of checking all of your options and you are so right in doing that yourself. You are your own best advocate and I will pray and pray that you get some good results and answers soon.
Warm hugs, Peggy
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Post by joannern on Nov 16, 2009 19:38:36 GMT -5
Thanks Peggy. I see the vascular doc again tomorrow. I should hear from the stem cell study people in Ohio tomorrow also.I have had numb toes on both feet for at least 4 years. The right heel developed an ulcer that would not heal and that was fixed by a bypass in 2007. Up unitl 10/27 (ironically my 62nd BD) my left leg just had numb toes. It was tested about 6 months ago and although not great it was minimally ok. Suddenly on 10/27 while laying down my foot got totally white, colder than any cold I have ever felt and numb from the ankle on down. That is how it remains. I am ok walking (sometimes gets numb, but not always) and sitting is no problem. After I am laying down for about 15 minutes the whole thing starts. As I have never smoked, have low cholesterol, good blood pressur and am not a diabetic they attribute this to my SD. As we know, SD is different for everyone. I have little skin involvement but do have Raynaud's, heart and kidney problems. Will post an update when I know something more. I am grateful for all the prayers, I really do need a miracle.
Joanne
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Post by christel on Nov 17, 2009 15:42:06 GMT -5
wow, Joanne, hang in there and take care... Much easier said than done, I know. I'll keep you in my thoughts and prayers.
Christel
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Post by joannern on Nov 17, 2009 18:36:07 GMT -5
Again thank all of you for your prayers and good wishes. I saw the vascular surgeon again today. The foot is not worse. That is good news. The silverhawk (roto rooter) is still in the "may have to try it stage" but for now we are going to wait. For the past 2 nights I have been able to remain in bed and not sleep in a recliner. Either I am now used to the numbness or it is slightly better. Whatever it is, I will take it. I am not yet willing to risk this procedure yet and since the foot has no signs of gangrene it is ok to wait. The doc agrees if I can get into a stem cell study there is not much to lose and lots to gain. I am still communicating with a Dr. who is conducting a study in Ohio. He has a great deal of my medical info and is still not saying no. That is a hopeful sign. I should know by the end of the week if they accept me. What could be better than drives to Columbus Ohio in the winter?? Remember we do like adventure travel. The other good news is I am off the Lovenox (injecable blood thinner). Won't miss that as it was very painful I look like a leopard with all the bruises it has left. So for now I continue to work, swallow pills and hope. Please keep the positive thoughts coming. I plan on cooking Thanksgiving dinner. It may require me to sit down between chopping the onions and the celery but I am determined. Here's hoping I will have even more positive news soon.
Joanne
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Post by Cubby on Nov 17, 2009 20:17:50 GMT -5
God bless you honey! My thought, prayers and well wishes are with you!
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Post by joannern on Nov 23, 2009 18:10:30 GMT -5
Finally some good news. I was accepted into a stem cell study for peripheral artery disease. I will have to travel to Clumbus Ohio, but a chance at saving my leg is worth that. I leave on 12/7 and procedure is set for 12/9. There have been some positive results with these types of studies so I have a glimmer of hope.
Thanks to all of you for your prayers and good wishes.
May you all hve a Happy and Thanksgiving.
Joanne
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Post by steve201 on Nov 23, 2009 20:34:17 GMT -5
Joanne That is wonderful news....see......our prayers worked.....now stay focused...stay positive...and we'll hold up our end and say prayers for you...keep us informed and have a great thanksgiving dinner before the treatment...
Steve
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lucci
New Member
Posts: 49
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Post by lucci on Nov 24, 2009 9:23:29 GMT -5
Thank-God!!! Such good news!!!I'm so excited for you, I can't imagine how you feel! Live in the moment and enjoy the positive news. Don't let anything bring you down and enjoy your family and have a Happy Thanksgiving!! God-Bless you Joanne and we're praying for you!!!
Lucci
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Post by mikana on Nov 24, 2009 15:14:20 GMT -5
Lots of big hugs and prayers from Texas.
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Post by joannern on Nov 24, 2009 18:28:40 GMT -5
Thanks to all of you. Thr prayers are working.
Gobble gobble and many blessings to all.
Joanne
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Post by Cubby on Nov 29, 2009 15:06:42 GMT -5
God Bless you and good luck!
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