Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Jeannie, I, and many others, share your frustration. I was diagnosed in May and although I have the diagnosis, all my tests results have been " normal " or " borderline " . I was in the hospital with Pneumonia in March and after my release I was having symptoms of fever and swollen glands, tingly feet, pain in my ankles, back, shoulders, right hand, face flushing, vertigo, shaky hands, etc. I have been diagnosed with Undiff. Spondy, Fibro, and CFS. I was on Short Term Disability (STD) when in the hospital and for my recovery. Because it took a few doctors, and so long to figure out a diagnosis, I exhausted my STD benefits and was terminated. Long Term Disability should have kicked in September 1st, but, they are still dragging their feet saying my Medical History (Tests) look normal. Not sure I will qualify to get anything. They have not paid me, might not pay me, and I can't get a job. Been fiddling with home base stuff, but, it's pocket change, if that. Well, about 6 weeks ago I started having IBS symptoms, they have progressed so that I have to go in Tuesday next week for Endoscopy, Colonoscopy, exploratory and biopsy surgery. They told me I would be in surgery 3 hours give or take. I have no income, I am a self supporting single mom, and have no family support. HoHoHo Merry Christmas! (I moved to Ohio, from California 4 years ago....Job promotion! Look what it has gotten me!) Was rarely sick until I moved here. My savings is exhausted, now I am on " Credit Card Payroll. " Don't give up, all of us will prevail, and you need to believe you will. My Rheumy, now looking back at when my symptoms probably started, dates my onset to 3 years ago. Keep your faith, keep positive thoughts, and keep leaning on us, that is what we are all here for! Smile... .....and laugh when you can. It's the cheapest medicine around! Janet - Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 In a message dated 12/18/2003 6:23:11 PM Pacific Standard Time, efnbkab@... writes: it would be a good idea to seek a " second opinion I think it is time NOW to schedule that second opinion. IF the tylonal works, GREAT! But while you are waiting to find out... be waiting for that appointment for the second opinion. Adrienne is waiting until the end of March to see a new Rheumy. That was the soonest she could get in. These things take time. Call the doctor tomorrow and tell him you are in a lot of pain, and would really appreciate getting the referal underway for the second opinion. Or... will your husband make that phone call for you? I find I have a lot of success being the caller/scheduler for Adrienne. Sometimes having someone other than the patient make the request seems to make things happen a little faster. Good Luck! I am very very sorry you are having such a rough time. K Adrienne's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hello everyone, I just wanted to update you all on the latest news that I received today from my Rheumatoidologist and see if I can get some feedback. I am extremely depressed right now b/c of the way the visit with him went. My bone scan results basically showed " nothing was wrong " other than there was some slight increase in my wrist, one hip and a couple ribs on the right side. He, again, said that with the physical exam and all the tests he has done he can find " nothing " that backs up the symptoms I am having. He won't give me any meds b/c he is afraid the ones he would want to try would flare up my Crohn's. He said he is " stumped as to what the underlying cause is or what it is that is creating all the symptoms " . He suggested I try taking 2-600 mg Tylenol T.I.D. to see if that will help and then call him back in a month. He is contacting my Gastro and PCP to update them as to what he is/isn't finding and making the suggesting that if the Tylenol doesn't work maybe it would be a good idea to seek a " second opinion from another Rheumatoidologist b/c maybe he just is 'overlooking' something " . I went back over all my symptoms with him and he understands the severity of them. I asked him if this could be Fibro and he said, upon his physical exam, he doesn't think so. So at this point I feel like I am back at square one with no answers or no prospect of getting them. I have been fighting with these symptoms since April of this year. Right now I just don't know how much more I can keep fighting this. I told my husband tonight whenI was explaining about the doc's visit, that I just can't fight this anymore. I hear people making comments about the way I walk (due to the extreme pain at times) and it really bothers me. I am only 49 but sometimes walk like I am 100. So at this point I just don't know what to do, where to turn and even what to think anymore. Sorry for this being so long. Thanks for listening, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hi Jeannie, I can relate to your comment about being 49 and walking like 100 (I'm 48, but have felt and walked like this for many years - sometimes better and sometimes worse). It took several doctors before I got a diagnosis and I'm still working with my rheumatologist to get the right combination of medications. If I was unhappy with my rheumatologist, I would be hard pressed to get another opinion from a different rheumatologist (luckily, I am happy). Can you get a second opinion? Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2003 Report Share Posted December 18, 2003 Hi Jeannie I too can relate to your frustration with the doctors. I think most of us went through the wringers before a diagnosis was made. Took them 10 years in my case. I got all the standard answers like, it's all in your head and stuff. This family of diseases are really a pain in the butt. However, today, I see better diagnostic tests and folks getting diagnosed more quickly. I too know the feeling of walking like a 200 year old person. I have a neighbour and parishioner with AS and she is about your age and is much more pronounced in her posture than I. Why? Because AS was considered only a man's disease, women didn't get it. Well, we all know how true that was. After my last MRI my interna-rheumy said the new inflamation had stopped but they could do nothing about the parts of my spine that are fused and that is where the majority of my pain comes from. So it is OxyContin SR that keeps me moving. Will keep you in our prayers, that God will lift the sense of frustration you are feeling. +Dave (older than dirt) " Everyday I beat my own previous record for number of consecutive days I've stayed alive. " --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.552 / Virus Database: 344 - Release Date: 15/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 I've had the steroid injections more than once and without success in: - elbows - feet - hips I've heard that it helps some people though. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Jeannie, I think the rheumatologist's idea that you should see a different rheumatologist is a good one. There's a section of the website with doctor recommendations. Where are you? Maybe some people in the group could recommend better docs. depending on where you are. As exhausting as it is, keep going until you find the right rheumatologist. I don't know why doctors find it so hard to diagnose this disease. God Bless, Janet in San Francisco ReA since 1973; diagnosed 1997; HLA-B27+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 If your problem is caused by sciatica there is a treatment that injects steroids into the sciatic joint and wouldn't cause medication interactions. The problem is that I don't know what is causing all this. No one seems to know what the underlying cause is. My primary says talk to my Gastro, my Gastro says it is probably an arthritic condition so see a Rheumy....now the Rheumy says see another Rheumy. I have had so many tests in the past 6 months and nothing shows up to give them a Dx. All I know is that I am tired of taking drugs to " curb the pain " (which really aren't helping at all)and still having to push through the pain with all the pain meds they have me taking. If I have to take meds I want them to help what I am taking them for not take them and they do NOTHING!!! Thanks for the input and response. Hugs, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Call the doctor tomorrow and tell him you are in a lot of pain, Hey K, Thanks for responding to my post. I have explained to him how much pain I am in. I went through all that with this last appt again to make sure he thoroughly understood that I can't keep going like this and something has to be done. My husband has been wonderful through all this...he is supportive but he has lost his patience seeing me suffering all the time. He gets really frustrated over all this esp. when I can hardly walk around or move. Thanks again for responding and the suggestions. Hugs, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 I see better diagnostic tests and folks getting diagnosed more quickly Hey Dave, Thanks for responding and your input. I agree there are great advances within the medical field regarding diagnostic testing and the ability to get a much quicker Dx than previous yrs. I was able to see alot of that through earlier yrs as well as learn about it while getting my degree. Plus working in the medical field I am able to stay on top of progresses. The rational side of my brain tells me all the medical stuff and keeps me sane b/c of the background in the medical field. The irrational side (the patient) is the one that is so frustrated and feeling hopeless. Guess this isn't a really good combination....LOL. Thanks again for the input and response. Hugs, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 I've had the steroid injections Hey Pat, I don't know if they will put me on any more steriods at this point. I am on a low dose of Prednisone (for the rest of my life)already and the Rheumy said if there was soft tissue inflammation or ligament/tendon inflammation the prednisone would be taking care of it. Well, it isn't b/c I was on the prednisone prior to all this happening and still am on it with no help. I know that prednisone and the injections are two different things but I just wanted to pass along the info that I do have regarding all this. Thanks for responding.... Hugs, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Where are you? Maybe some people in the group could recommend better docs. depending on where you are. As exhausting as it is,keep going until you find the right rheumatologist. Hey Janet, I am in upstate NY. I have a wide array of places I can go depending on the direction I travel. I don't know if anyone from the list is in my area to know of any good Rheumy's besides the name I already have (he is suppose to be the BEST in the area). I do try to keep going but on the days when I am in excrutiating pain it is really difficult to keep pushing through the pain or keeping the faith that it will get better. Those are the days that are the worst and the ones when I really want to give up trying to fight all this. Those are the days when I want to crawl into bed and just stay there. Thanks for the input and suggestions. Hugs, Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Dear Jeannie, What dose of pred are you on? I am considering going on it full-time for the soft tissue inflammation I seem to have constantly this past year. Thanks...Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Jeannie, I am in upstate NY too, and see a very good doctor. Write to me at my home email address (ppawlacz@...) and I might be able to direct you. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 First things first. We wish you all a Merry Christmas and a Blessed New Year. Christmas Eve Midnight Mass included all of you on this list, asking God to deal with our common ailments and if it is His will, to heal us. Jeannie wrote: > The rational side of my brain tells me all the medical stuff and keeps me > sane b/c of the background in the medical field. The problem with medical knowledge is that if one has that gift, things can get out of hand a bit faster than with someone with no medical knowledge. When Dr. Baker, my diagnosing doctor, told me I had AS, I knew what the prognosis was as I had worked in the Nuclear Medicine field. I remembered all the X-rays that I saw during my training. It sent shivers up and down my spine. Now they just come naturally.<GBG> BTW it was the medical field that helped me along to insanity. +Dave, AS, RS, PA, RA, and Parkinsons " Everyday I beat my own previous record for number of consecutive days I've stayed alive. " --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.555 / Virus Database: 347 - Release Date: 23/12/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2003 Report Share Posted December 27, 2003 What dose of pred are you on? Thanks...Debra! Hey Debra, I am on 5 mg QAM & 2.5 mg QPM as a maintenance dose. In the event I get sick it is upped to 10 mg QAM & 5 mg QPM until I am over being sick then it goes back down. Please be aware of the side effects from this med....weight gain (due to increased appetite), moon-face, edema of the legs, as well as others. Do some research first on the drug to see if the side effects are worth going on the drug. Good luck!!!! Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2003 Report Share Posted December 28, 2003 Dear Jeannie, Have you experienced any of the side effects you've mentioned? I thought that only happens on high doses, and yours doesn't sound that high compared to some I've read about. I haven't had any of that happen yet, but I have to diet constantly to not gain weight and stay thin. Maybe that is occurring from the steroid use. Please let me know more...... Thanks, Debra! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Have you experienced any of the side effects you've mentioned? but I have to diet constantly to not gain weight and stay thin. Maybe that is occurring from the steroid use. Please let me know more...... Hey Debra, When I was first on the Prednisone they did have me on a much higher dose and did experience all of the side effects I mentioned. It wasn't until they were able to find what my maintanence dose would be that the side effects seem to calm down. The weight gain is a normal side effect of this steriod (unfortunately) b/c it does increase your appetite as well as the water retention (edema). When I do have to increase my dose due to illness I will gain a little weight, my face becomes a bit rounder and I have alot of leg edema. After I am able to decrease my dose back to the maintenance dose, the side effects seem to calm down. I hope this helps....Keep us posted, please? Jeannie -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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