violahen Posted January 30, 2005 Report Share Posted January 30, 2005 Hi Blackwolf:I'm so sorry to hear about your continued trouble....I can really relate to your feeling that something is going to happen. I almost always get a sort of "premonition feeling" prior to getting really sick with my POTS stuff. If that's the case with you I would try to rest as much as possible and just allow yourself to listen to your body and don't doubt yourself....You don't need to justify your feelings to anyone....they ARE valid....and probably very accurate. Be persistent with the docs, and get yourself to a specialist who will listen.I'm a patient of Dr. Grubb's....I know he plans to come back sometime in February...he is also supposed to be getting an assistant to help out....have you ever seen him before, or have you been trying to get a first appt. with him? I know they are really backed up, but if you are already a patient, I would call back and see if SOMEONE can help there.Good luck....Kristen Quote Link to comment Share on other sites More sharing options...
blackwolf Posted January 30, 2005 Author Report Share Posted January 30, 2005 dear kristen-thanks for the thoughs, i'm still in horrible pain, but still hangin' on.my gp has refused any other meds besides sleep aids, so i'm on my own. he wasn't even willing to discuss neurontin or xanax. per dr. grubb, i have never had the pleasure of meeting him, though i would love too. right now i just want him to get better, so that some day, i might get enough money together to see him. the pastor at my church said they would do anything to help, but i understand they are booking months in advance now and he still isn't back in the office yet. i would be happy just to see anyone who knows what they are doing. my search here has turned up nothing, most docs don't even know what dysauto. is and i'm getting sicker by the day. the idea of traveling to see dr. grubb would even perk me up, but i know now that it will probably never happen, between medicare and medicaid, i'm stuck in the you know what up to my ears. ok, i know enough whining, i'm heading back to rest again. blackwolf Quote Link to comment Share on other sites More sharing options...
corina Posted January 30, 2005 Report Share Posted January 30, 2005 Hi Blackwolf,I'm so sorry you're having such a rough time. I can't do anything to help you but sending you good thoughts and letting you know that I'm thinking about you. Hope you'll have a good rest this night and that your pain will be less. All the best,Corina Quote Link to comment Share on other sites More sharing options...
blackwolf Posted January 31, 2005 Author Report Share Posted January 31, 2005 dear corina, amen and thank you, sometimes just one little, simple comment like that is sssooo nice to hear. thank you everyone out there, silent or otherwise.blackwolf Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 31, 2005 Report Share Posted January 31, 2005 So sorry to hear about your aunt. And I hope your new med is agreeable to you. Not much energy here either. My best to you always. May you have some peace and relief these coming weeks.Take care!! Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 1, 2005 Report Share Posted February 1, 2005 Hi,Would it be possible to find a doc who would let you try Xanax or something similar?Ernie Quote Link to comment Share on other sites More sharing options...
blackwolf Posted February 2, 2005 Author Report Share Posted February 2, 2005 ernie-around here the best bet is a good shrink, i'm looking,but haven't found what i need yet.thanks, blackwolf Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted February 2, 2005 Report Share Posted February 2, 2005 Blackwolf,I live so close to where Dr. Grubb's office is (about a mile)---and I often meet with many of his patients who come from out of town. Please let me know if there is any way I can help. julia59@buckeye-express.comPlease hang in there and know that I am praying for you.Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted February 2, 2005 Report Share Posted February 2, 2005 Blackwolf-Won't your PCP prescribe it for you? Simply because of lack of sleep? Geez, they don't have to prescribe a ton or anything. Actually, the Klonipin would be better and it's not really "as addicting" as Xanax!!! Try your PCP!! Quote Link to comment Share on other sites More sharing options...
blackwolf Posted February 3, 2005 Author Report Share Posted February 3, 2005 julie-i would be there in a flash, if it weren't for all the red tape. i just don't have the cash right now. i am thinking about getting an appointment and then just trying to save up the cash i need to get there and stay there then back. the hard part is that i would have to come alone, i haven't traveld alone for almost 3 years now and truthfully, it scares the blank-blank out of me. silly isn't it.mary form oh-i wish i could, she is no longer with the cliinic and i'm stuck with the ego doc, who complained about the info i brought in, even some stuff form vandi. i just wish he would grow up. and again, klonipin is not something he uses becaouse of other problems with it. whatever, i have decided that i just won't let it get me and have started a heavy duty search for a new doc. at this point i am willing to pick up the co-pay from medicaid just to get the extra help.thank you all very much for your warm thoughts and prayers.blackwolf Quote Link to comment Share on other sites More sharing options...
blackwolf Posted February 6, 2005 Author Report Share Posted February 6, 2005 i posted this on my other thread but thought i had better so it here to. i got the neurontin, buy way of a different doc. i went to the urgant care clinic to get some help to get to monday and the doc gods smiled on me. it turned out that her brother has mild pots and she said " why hasn't he put you on neurontin?" i said she would have to ask that herself. i had all the stuf i had printed off and asked if she would leave it for him. she said " no. i'll leave him ifo on pots and treatments and a recomendation for an mri to cover cervical and thorasic(sp?) spine and i really hope eh follows up on it. she was so nice and asked about 20 questions about my symptoms and what i was doing to control them. she was very good to work with. thank you all for helping me thru all of this.blackwolf Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted February 6, 2005 Report Share Posted February 6, 2005 God works in mysterious ways!!! I'm SOOOOO happy for you!! At least you have a new med to try!! I hope it works for you!! And, I hope you wrote down the name of the doc at the urgent care. Maybe you can use them as your "PCP"!!!Even though I've been migraining for 2 days, you brought a HUGE smile to my face!!! Quote Link to comment Share on other sites More sharing options...
dream02 Posted February 6, 2005 Report Share Posted February 6, 2005 Isn't it strange how things work out sometimes!? I hope the neurotin is helpful for you and that you feel better really soon!Denise Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted February 6, 2005 Report Share Posted February 6, 2005 Another option is physical therapy. I have had good results, and if its not working they will call your doc and let them know. Next time you see this "GOOD DOC" make sure to get enough with refils!!!!!!!!!!!!!!!!!!!!! Blessings Miriam Quote Link to comment Share on other sites More sharing options...
DawnA Posted February 7, 2005 Report Share Posted February 7, 2005 Just read this lonoong thread for the first time. I am sorry to hear that you are having such a hard time. Your Dr sounds stubborn and arrogant...how frustrating. Is the neurotin helping? If it does, I pray that your Dr is willing to refill it or you may have to have another ER visit.I am sorry to hear about your Aunt. Yes, when it rains it poors. I lost an Aunt at 61 in Dec. My other Aunt has been living on a venilator for a month...poor thing she is only 65. My mom is having a hard time dealing with this, esp when my stepfather has just been given a fatal prognosis. I hope things come together for you soon. I am glad to hear you have a supportive church.God Bless, Dawn A Quote Link to comment Share on other sites More sharing options...
blackwolf Posted February 7, 2005 Author Report Share Posted February 7, 2005 mary-thank you, yes i did write down her name. the only down side is that she comes down form north dakota only very few weeks to work the weekends at the clinic, but i'll keep her in mind.denise-thank you, too. yes the neurontin is working. i was given 300mgs, 3 times a day. it was a little to strong. so i have been slowly been cutting the dose by opening the capsul and emptiing out some at a time, i'm down to a little less than half a capsul now and doing very well. a little pain and no side-effects to speak of. according to the info i got i can just mix the powder in juice or applsause, so i am and getting two doses from one pill! i am glad i had enough brain power to think to save the powder than to chuck it. miriam-i would love to be back in pt but with my bp on the fritz now, i'm stuck doing just a few exercises now and i need to get into a pool to get more done, my doc is draging his heels as he isn't sure about getting it all payed for( i have medicare and medicaid and they don't like pool pt) dawn-thank you to you as well. things are starting to look brighter for me. i have found a group that works with the elca(lutheran church group) to help with medical problems and expences. there is a msa support group here in town and after a talk with the parish nurse who runs it, she invited me to the next meeting, she said she would call with the details when a date was set. she also had some suggestions for possible docs for me to talk to. she knows they know there stuff. she even said she would go with to help get all the bases covered as to tests, meds, anything that might help. god bless all of you. blackwolf Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.