Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Judee, I sure hope you don't have torn rotator cuffs too. Rich had one on his left shoulder.. He had surgery and now all is fine... But I know how painful it can be... I will be keeping you in my prayers.. Boy...can I have some of your dad's energy??????LOL What an inspiration.. You take care and be sure to keep us updated. lots of hugs and prayers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Judee, I sure hope you don't have torn rotator cuffs too. Rich had one on his left shoulder.. He had surgery and now all is fine... But I know how painful it can be... I will be keeping you in my prayers.. Boy...can I have some of your dad's energy??????LOL What an inspiration.. You take care and be sure to keep us updated. lots of hugs and prayers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Dear Judee, this morning I woke up and my shoulders and chest hurt so bad...no reason why, they just did. I could move and that helped but damn it hurt. My chest bones also hurt bad. Can't get rid of the infections. Have two small cuts on my hands that are now all red from infections. Will call pcp tomorrow or go in and get on major anitibiotics. Just got off 10 days of Augmentin, 850 mgs twice a day but didn't do anything....I just can't get rid of infection....Talk to you soon...Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Dear Judee, this morning I woke up and my shoulders and chest hurt so bad...no reason why, they just did. I could move and that helped but damn it hurt. My chest bones also hurt bad. Can't get rid of the infections. Have two small cuts on my hands that are now all red from infections. Will call pcp tomorrow or go in and get on major anitibiotics. Just got off 10 days of Augmentin, 850 mgs twice a day but didn't do anything....I just can't get rid of infection....Talk to you soon...Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Judee, Good luck with the MRI, I'll be praying that everything will be okay. Sandy Subject: MRI I will be going in Fri. for MRI for both shoulders. Praying that I have not torn both rotator cuffs, but having a lot of pain. Doc put me back on 10mgs. of Pred. after 45days off. SED rate was up to 59. Trying to get into a Rheumy now. My PC says he doesn't know how to treat me since what he did has not worked, and the pred. will just make my muscles weaker. Dad is still doing great with his RP. He is digging trenches to put in water lines to his and Kay's house. They are just getting hooked up to city water. Not in the country anymore. The city has moved out to them. Love & prayers, JudeeDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Judee, Good luck with the MRI, I'll be praying that everything will be okay. Sandy Subject: MRI I will be going in Fri. for MRI for both shoulders. Praying that I have not torn both rotator cuffs, but having a lot of pain. Doc put me back on 10mgs. of Pred. after 45days off. SED rate was up to 59. Trying to get into a Rheumy now. My PC says he doesn't know how to treat me since what he did has not worked, and the pred. will just make my muscles weaker. Dad is still doing great with his RP. He is digging trenches to put in water lines to his and Kay's house. They are just getting hooked up to city water. Not in the country anymore. The city has moved out to them. Love & prayers, JudeeDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Sue, Just to let you know, When you go to the dr make sure you ask him if there is a chance you have Strep A. It is a bad infection that can spread from having a cut on your body. Nothing to fool around with. Keep us in touch. Carol --- grandm4@... wrote: > Dear Judee, this morning I woke up and my shoulders > and chest hurt so > bad...no reason why, they just did. I could move and > that helped but damn it > hurt. My chest bones also hurt bad. Can't get rid of > the infections. Have two > small cuts on my hands that are now all red from > infections. Will call pcp > tomorrow or go in and get on major anitibiotics. > Just got off 10 days of > Augmentin, 850 mgs twice a day but didn't do > anything....I just can't get rid > of infection....Talk to you soon...Sue M > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Sue, Just to let you know, When you go to the dr make sure you ask him if there is a chance you have Strep A. It is a bad infection that can spread from having a cut on your body. Nothing to fool around with. Keep us in touch. Carol --- grandm4@... wrote: > Dear Judee, this morning I woke up and my shoulders > and chest hurt so > bad...no reason why, they just did. I could move and > that helped but damn it > hurt. My chest bones also hurt bad. Can't get rid of > the infections. Have two > small cuts on my hands that are now all red from > infections. Will call pcp > tomorrow or go in and get on major anitibiotics. > Just got off 10 days of > Augmentin, 850 mgs twice a day but didn't do > anything....I just can't get rid > of infection....Talk to you soon...Sue M > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 --- IdahoJudee wrote: > I will be going in Fri. for MRI for both shoulders. > Praying that I have not torn both rotator cuffs, but > having a lot of pain. Doc put me back on 10mgs. of > Pred. after 45days off. SED rate was up to 59. > Oh, Judee,I am really feeling for you! I never had such pain (well apart from the ears) I had this some years ago, I was in agony all the time, and I went to an orthopedic surgeon. He said MRI, and I said, oh no, I don't want surgery, blah blah, but of course it got worse, really unbearably painful (this is the left shoulder) so I went back, had the mri, had surgery - the bone was impingeing on the tendon, and had torn it. I felt pretty grim, but once I did the rehab and started swimming again, it rapidly improved. The exact same thing happened to the other shoulder this time I did not waste any time, went straight to the doc, asked for an mri, and got that one fixed too. When I had the first one I had not been diagnosed with rp, and had what I realise now, was aflare triggered by the surgery, so I was put on pred then. The second one was much easier as I didn't wait until the tendon was totally shredded!!! So if they say surgery is the answer, don't worry, go for it!! If you are at all worried, go for a second opinion. > > Both my shoulders are good now. I can lift weights (within reason), So I hope they can find a simple solution, but if surgery is necessary, try not to worry too much. Love and prayers, Liz ,> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 --- IdahoJudee wrote: > I will be going in Fri. for MRI for both shoulders. > Praying that I have not torn both rotator cuffs, but > having a lot of pain. Doc put me back on 10mgs. of > Pred. after 45days off. SED rate was up to 59. > Oh, Judee,I am really feeling for you! I never had such pain (well apart from the ears) I had this some years ago, I was in agony all the time, and I went to an orthopedic surgeon. He said MRI, and I said, oh no, I don't want surgery, blah blah, but of course it got worse, really unbearably painful (this is the left shoulder) so I went back, had the mri, had surgery - the bone was impingeing on the tendon, and had torn it. I felt pretty grim, but once I did the rehab and started swimming again, it rapidly improved. The exact same thing happened to the other shoulder this time I did not waste any time, went straight to the doc, asked for an mri, and got that one fixed too. When I had the first one I had not been diagnosed with rp, and had what I realise now, was aflare triggered by the surgery, so I was put on pred then. The second one was much easier as I didn't wait until the tendon was totally shredded!!! So if they say surgery is the answer, don't worry, go for it!! If you are at all worried, go for a second opinion. > > Both my shoulders are good now. I can lift weights (within reason), So I hope they can find a simple solution, but if surgery is necessary, try not to worry too much. Love and prayers, Liz ,> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 I'll keep that in mind when I talk to him....thank you so much...Take Care of You...Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 I'll keep that in mind when I talk to him....thank you so much...Take Care of You...Sue M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Nicki- I know that with MNGIE there is brain involvement and that MRI's are done fairly frequently. I don't know what the results mean though. Wishing you the best. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Recently my son Connor, who has complex III and IV, cox deficiency and MNGIE had an MRI done. This is his 3rd since he was 2years old and he is now 7. The other two came back normal but this one didn't. His dr told us the right side of his basal ganglia was white instead of black as it should be. She said the problem is deep in the brain. I'm a little concerned that they are stroke-like episodes. Does anyone know what this might mean? Connor has seizures, has autistic characteristics, a g-tube, delayed of about 5 years and mentally disabled. His muscles are ok right now though he can't walk for more than a few minutes before he is tired. If anyone has any ideas please let me know. The neurologist doesn't know what it is and has referred it to his geneticist. Nicki-frequent browser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 has exactly what you described, except both sides of his basal ganglia are affected, and very white (they called it increased signal intensity in the report). My son is 21 months old, and his only symptom that they think is related to the basal ganglia involvement is tremors that come and go. they really arent too severe at this point. I was told by the radiologist, neurologist, and genetecist that basal ganglia involvement is actually considered a very strong clue towards a mitochondrial disorder, they assured me it wasnt a stroke, but that its just brain tissue that appears 'different' from the norm. They also told me it could cause symptoms simiar to parkinsons, (tremors, etc), it could cause migraines, or it could cause absolutely nothing at all... My understanding is they really dont know... hasnt been diagnosed yet officially, as he goes on tuesday for his muscle biopsy, however they said based on the MRI, and bloodwork, its a safe bet that its mitochondrial. I have scoured the internet up and down and found nothing that explains what the MRI findings are and mean (at least nothing in understandable english... lol!) Has Connor had any tremors lately? gets very shaky when he crashes, and in the mornings in general... Keely > Recently my son Connor, who has complex III and IV, cox deficiency and MNGIE had an MRI done. This is his 3rd since he was 2years old and he is now 7. The other two came back normal but this one didn't. His dr told us the right side of his basal ganglia was white instead of black as it should be. She said the problem is deep in the brain. I'm a little concerned that they are stroke-like episodes. Does anyone know what this might mean? Connor has seizures, has autistic characteristics, a g-tube, delayed of about 5 years and mentally disabled. His muscles are ok right now though he can't walk for more than a few minutes before he is tired. If anyone has any ideas please let me know. The neurologist doesn't know what it is and has referred it to his geneticist. > > > Nicki-frequent browser Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Keely, Thanks so much for the information. You're the first person who has been able to tell me anything at all, including his neurologist! But its interesting that your son has trembling. Connor has seizures so I guess that white area has to do with seizures, tremors, that kind of thing, although Parkinson's isn't a very comforting thought. I guess there is just so much wrong with these kids, they can show up with just about anything. I'm so relieved you were told it isn't strokes. That was the main thing I was afraid of because some of the more serious things like Melas and Merrf are connected to his type of mitochondrial disease. Things could definitely be worse. Good luck with the biopsy. It's really not too bad. I hope by some miracle they are wrong about your child. I wouldn't wish this on my worst enemy! Nicki Quote Link to comment Share on other sites More sharing options...
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