Guest guest Posted November 18, 2000 Report Share Posted November 18, 2000 Hi Everyone Don't know if my last message got through, but tests for myloma came back clear. MRI scan did reveal marked degeneration of dorsal and lumbar spine, although it is not thought this is related to my present problems. My medics are at a loss to explain my repeated UTI infections, general malaise and sometimes fevers, or the chronic loin pain. Interestingly I first became ill on a return trip from Kenya 1998!, when I was admitted to hospital with a severe infection, which was undiagnosed, just referred to as 'non-specific'. Next trip is to the London Hospital for Tropical Diseases, to check there is nothing lurking about me, which is not picked up in a run of the mill blood screen. I am becoming increasingly lacking in confidence with the medical profession at the moment, and snide comments of 'it could be in your mind!!!' really get to me. How one can will a temperature etc is beyond me, maybe I should get a job on the stage!!!! I am told quite categorically that these continuing symptoms are not related to my IGAN, but when you read other people's stories, it sounds oh so familiar, I guess the jury is still out on this, which is hard luck for me. Anyone had similar problems please? Would also like to know if St 's Wort is ok to take with IGAN? I take fish oil and vitamin e tablets, and top up with Echinacea when I have been on antibiotics which seems to be most of the time at the moment!! Best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2000 Report Share Posted November 18, 2000 . So glad the cancer scare is over!!! Your message got through Ok. I marked it as unread so I could reply after supper or something, and then it got lost in a pile of other emails and I eventually forgot all about it. I've been more busy than usual with other matters this past week. Sorry about that. I can say with some certainty that IgAN is not normally associated with UTI's. That's not to say that it might not be something else though. In women, UTI's are fairly common, IgAN or not. I forget, have you seen a urologist about this? Nephrologists and urologists are not necessarily interchangeable. Anyone ever mention anything to you about urinary reflux of any kind? Something like that could be the source of your loin pain. Is there any possibility at all that you might have had the symptoms of HSP at one time, and that your IgAN may be the result of that? Do you have these problems when you don't take the fish oil? Some people are sensitive or allergic to fish oil you know, and that goes for vitamin E also (because most commercial vitamin E comes from soy oil, and a lot of people are allergic to soy products). Fish oil in particular can cause a lot of abdominal distress. As far as the echinacea goes, this has been the subject of much debate among IgAN patients over the past few years -- as to whether it can make IgAN worse or not. If we accept that IgAN is an autoimmune disease (which is not a foregone conclusion at this point), then anything that enhances the immune system might not be a good idea. I don't think the medical profession has come down on either side of this debate yet, at least not definitively. Never heard anything negative about SJW in the IgAN context. Here's a great SJW FAQ: http://www.primenet.com/~camilla/STJOHNS.FAQ I tried SJW once and it gave me terrible anxiety. Personally, and this is just my decision, I stay away from herbal products of any kind. But lacking any medical guidance on these things, I guess we all have to make our own decisions. So many things that aren't nephrotoxic enough to cause problems in normal kidneys might be for damaged kidneys. Who knows? The IgAN population isn't big enough for all the possible problems with any given herbal product to become apparent. Just curious, once you've gotten over a bout of UTI with antibiotics, have you tried staving off recurring infections with real cranberry juice? Sorry I have no definite answers for you. I'll say one thing though, I have never bought the " it's all in your head " idea, for anything. I think every physical symptom has a physiological cause -- it's just that not all causes have been discovered yet. The only exception I make to this is chronic hyperventilation (sometimes, but not necessarily from anxiety), which can cause a whole array of physical symptoms that are well-known, but we know that they are caused by too much CO2 being " washed " away by overbreathing. After all, a century ago or a bit more, they thought that diseases we know to be infections today were caused by bad " ether " , bad air, sins, etc., and all the time they were caused by little bugs. Pierre Update > Hi Everyone > > Don't know if my last message got through, but tests for myloma came > back clear. MRI scan did reveal marked degeneration of dorsal and > lumbar spine, although it is not thought this is related to my > present problems. > > My medics are at a loss to explain my repeated UTI infections, > general malaise and sometimes fevers, or the chronic loin pain. > Interestingly I first became ill on a return trip from Kenya 1998!, > when I was admitted to hospital with a severe infection, which was > undiagnosed, just referred to as 'non-specific'. Next trip is to the > London Hospital for Tropical Diseases, to check there is nothing > lurking about me, which is not picked up in a run of the mill blood > screen. I am becoming increasingly lacking in confidence with the > medical profession at the moment, and snide comments of 'it could be > in your mind!!!' really get to me. How one can will a temperature > etc is beyond me, maybe I should get a job on the stage!!!! > > I am told quite categorically that these continuing symptoms are not > related to my IGAN, but when you read other people's stories, it > sounds oh so familiar, I guess the jury is still out on this, which > is hard luck for me. > > Anyone had similar problems please? Would also like to know if St > 's Wort is ok to take with IGAN? I take fish oil and vitamin e > tablets, and top up with Echinacea when I have been on antibiotics > which seems to be most of the time at the moment!! > > Best wishes > > > > > eGroups Sponsor > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Donna, Thanks for the crossed fingers. I'm satrting to think I can use all the luck I can get. F --- Glenn & Donna wrote: > Good luck , we will keep our fingers crossed > for you. > Donna G > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Lillian, I am so glad you finally got yours. Thank you so much for your prayers. It will help to know someone's pulling for me. It's been a long road. I'll be sure to let you know. F --- tootsalba wrote: > Oh , > > I am praying furiously that your will be awarded > this. I know from > bitter experience how stressful this is. We (Ann > and I) were awarded > Disability Living Allowance last week. What a > difference it will make > to us both. Shall continue the prayers until you > tell me you have been > awarded it. > > Love and Hugs, > > Lilian > > Fers wrote: > > > > Hello Everyone! > > I got a call from disability today. It seems > I've > > made it through the first 3 steps of the process. > My > > claim has now been sent to the review board in > KC,MO > > for final decision. I should know within the next > 2 > > weeks. Wish me luck. I've been fighting since > 1996. > > > > F > > CEDS > > Lebanon,MO > > USA > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Ron...as you know, I feel that you're making the right decision with the move. I hope the transition goes smoothly, and you can once again stop and take a deep breath and regroup. I find that at times, when I am totally stressed, that I forget to breathe. It's not until I almost black out that I realize what I've done...*LOL* Jannis Redefining Normal Every Day Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Ron, you have made the right decision for both you and your mom. Your test results show that, thankfully! You've been through such a lot but hopefully now you can get on track with your dear sister's help and continue this journey more positively. There will be valleys, but I'm hoping the worst is behind you in putting the best scenario together for yourself as well as for your mom. Continued strength to you all. Gibsons BC Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > Hi everyone, well I went to the doctor today and I got a voicemail while away from the phone that mom has been approved for the senior appartments.Im calling him in the morning and as soon as we can Im moving her in.I weighed it all out and just cant keep her here for another winter.I will be with her most of the time and my sister the rest of the time so she will never be alone and if she has trouble adjusting  Im just going to stay focused and wait it out.This house is not livable anymore and the bills are outragious.On a side note, some may remember some of the health problems I had last winter, well, Ive just been completely checked out about 3 weeks ago and all the results are in and my bad cholesterol is normal, my god cholesterol is normal, my heart looks fine, and Im low risk for any heart problems.And I have to let the cat out of the bag, about a month ago I quit the anti depressants without telling anyone and Ive been off of them for a month > now and finally told my doctor when she asked me if I needed a refill.I have been doing just fine without them and am no longer on them.Just wanted to share the news.My heartfelt best to you all, I may be off for a few days when I move mom to her new place.  Ron > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 --- Hi Jannis, Thank you for this, lol. I know what you mean about the stress.I like your signature too, redefining normal every day, is that something youve put on since lewy body entered your life?Because that is exactly what we have to do everyday with this in our lives, normal as we know it is a distant memory.But at least we can all lean on eachother here and laugh when we can.Heartfelt best to you Ron In LBDcaregivers , Jannis Hallford wrote: > > Ron...as you know, I feel that you're making the right decision with the move. I hope the transition goes smoothly, and you can once again stop and take a deep breath and regroup. I find that at times, when I am totally stressed, that I forget to breathe. It's not until I almost black out that I realize what I've done...*LOL* > > > > Jannis > Redefining Normal Every Day > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 --- Dear , Thank you very much for the very kind words of support and encouragement, I know there will be valleys ahead and I know my mom will only get worse, but after my relationship ended, I kinda without realizing started to regroup and rebuild inside and it must have been because I hit the bottom, but now I seem to feel more understanding of where this is all going and I have learned to exept the outcome , and I just want to give the very best effort while I have her here to give her all of the quality of life possible.I look back on the days in the past and realize how lost I was with no clue, and instead of acting I was reacting to everything.I think this move is the first good step in the right direction to give mom all I can while I can.I really appreciate your caring posts Sabdra. Ron In LBDcaregivers , " stimtimminss " wrote: > > Ron, you have made the right decision for both you and your mom. Your test results show > that, thankfully! You've been through such a lot but hopefully now you can get on track > with your dear sister's help and continue this journey more positively. There will be > valleys, but I'm hoping the worst is behind you in putting the best scenario together for > yourself as well as for your mom. Continued strength to you all. > > Gibsons BC > Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD. > > > > > > Hi everyone, well I went to the doctor today and I got a voicemail while away from the > phone that mom has been approved for the senior appartments.Im calling him in the > morning and as soon as we can Im moving her in.I weighed it all out and just cant keep her > here for another winter.I will be with her most of the time and my sister the rest of the > time so she will never be alone and if she has trouble adjusting  Im just going to stay > focused and wait it out.This house is not livable anymore and the bills are outragious.On a > side note, some may remember some of the health problems I had last winter, well, Ive > just been completely checked out about 3 weeks ago and all the results are in and my bad > cholesterol is normal, my god cholesterol is normal, my heart looks fine, and Im low risk > for any heart problems.And I have to let the cat out of the bag, about a month ago I quit > the anti depressants without telling anyone and Ive been off of them for a month > > now and finally told my doctor when she asked me if I needed a refill.I have been doing > just fine without them and am no longer on them.Just wanted to share the news.My > heartfelt best to you all, I may be off for a few days when I move mom to her new place.  > Ron > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Hi Ron, Glad things are working out and that you're healthy. All the best, Holly > Oh, Ron! I am so happy for you and so very proud of you! > > Gladys > > -- update > > Hi everyone, well I went to the doctor today and I got a voicemail while > away from the phone that mom has been approved for the senior > appartments.Im > calling him in the morning and as soon as we can Im moving her in.I weighed > it all out and just cant keep her here for another winter.I will be with > her > most of the time and my sister the rest of the time so she will never be > alone and if she has trouble adjusting Im just going to stay focused and > wait it out.This house is not livable anymore and the bills are outragious > On a side note, some may remember some of the health problems I had last > winter, well, Ive just been completely checked out about 3 weeks ago and > all > the results are in and my bad cholesterol is normal, my god cholesterol is > normal, my heart looks fine, and Im low risk for any heart problems.And I > have to let the cat out of the bag, about a month ago I quit the anti > depressants without telling anyone and Ive been off of them for a month > now and finally told my doctor when she asked me if I needed a refill.I > have been doing just fine without them and am no longer on them.Just wanted > to share the news.My heartfelt best to you all, I may be off for a few days > when I move mom to her new place. Ron > > > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Ron, This is great news all around!!!!! So happy for you and your mom and am keeping my fingers crossed that all goes well. Courage update Hi everyone, well I went to the doctor today and I got a voicemail while away from the phone that mom has been approved for the senior appartments.Im calling him in the morning and as soon as we can Im moving her in.I weighed it all out and just cant keep her here for another winter.I will be with her most of the time and my sister the rest of the time so she will never be alone and if she has trouble adjusting Im just going to stay focused and wait it out.This house is not livable anymore and the bills are outragious.On a side note, some may remember some of the health problems I had last winter, well, Ive just been completely checked out about 3 weeks ago and all the results are in and my bad cholesterol is normal, my god cholesterol is normal, my heart looks fine, and Im low risk for any heart problems.And I have to let the cat out of the bag, about a month ago I quit the anti depressants without telling anyone and Ive been off of them for a month now and finally told my doctor when she asked me if I needed a refill.I have been doing just fine without them and am no longer on them.Just wanted to share the news.My heartfelt best to you all, I may be off for a few days when I move mom to her new place. Ron Quote Link to comment Share on other sites More sharing options...
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