I meant we have a section called Your Story where you might want to include hours.
I hope you find the right medicine to help you.I saw my gp today. The main point of my visit is my continuing journey of withdrawel from targin (oxycodone//naloxone). I had been built up to a dose of 80mg a day. Unfortunately it was no longer stopping pain but causing it, hypo-algesia they call it. It is taking 32 weeks to get off it and I am down to 5mg morning and ten at night. It has been a long haul strewn with opiate induced constipation and bottles of coloxyl and dulcolax. I got my usual scripts but I am becoming increasingly concerned about not getting enough air when I breathe. I use cpap at night for apnea but at times it does not seem effective. A few years ago I spent time in hospital with parainfluenza. It hit me so hard I was leaking troponin the heart attack enzyme. Whilst I was in hospital they told me I had severe asthma and sent me home with a symbicort turbohaler preventative and ventolin with a spacer.. I did the spirometer thing today plus the second test after 4 puffs of ventolin. The ventolin did not make that much difference. My doc looked at the results and came to the conclusion that what I had did not really behave like asthma but more like copd. Today I started a new inhaler for copd. I don't know whether I can stay on it tho. When I read the side effects it said that it was not kidney friendly and I suffer nephrotic syndrome (an unknown auto-immune form). I am going to have to be very careful and run it past my nephrologist before I commit to it. Sadly the dose I took this morning helped my breathing. It might be like nsaids anther drug that works but I can't take because of my kidneys. I have had some severe breathing difficulties during the past weeks. Ventoloin struggled to alleviate them and when I did three days on the symbicort preventer my blood pressure went off the scale and I am on five bp meds a day. I am getting tired of juggling hand grenades all the time. Why can't life be simpler. Ron.
AgrrefThanks Ron , the new med is called Spiriva. I read up on it last night . apparently it is highly addictive( the last thing I need is another drug like oxycodone ) They also said it could cause severe nephrotic syndrome. I really think I need to talk to my nephrologist before I touch this stuff. Ron50
Prayers and support.Saw my nephrologist today. My kidneys are behaving and the cyclosporine is keeping the nephrotic syndrome under control. He asked how I was and I said fine except for wasting my time breathing. He checked my chest heart and lungs. He was taken aback when I said my neuropathy and oedema were both out of control. He checked my legs. the oedema is almost past the knees. his other checks revealed fluid in my lower lungs. He is suspecting pulmonary oedema and congestive heart failure. He also said that he can hear a murmur in my heart that is consistent with a leaky valve. I have to double my daily lasik dose whilst cutting my fluid intake to one litre a day. he wants me to shed at least two kilos of fluid and then see if It helps me sleep at night.Ron.
Hoping the best for you.Well I saw several docs today, first was a skin cancer specialist. I have had a spot appear on my lower cheek and grow over 6 or 7 weeks . I told him I didn't like the lookof it. He agreed , he did not take a biopsy he excised it with margins . He thinks it is a highly pigmented BCC ( black) at least he hopes it is , so do I.
Then off to the nephrologist for heart ultrasound results , lots of sounds like and could bees and then the final comment , patient is very difficult to ultrasound due to his build ,so the result , We don't know but it doesn't seem like you have atrial fibrillation but you may and we don't think it is heart failure but it sure acts like it.My neph sent me downstairs for an ecg . Lots and lots of ectopics but no fibrillation Oh and yeah there seems to be scar tissue at the bottom of your heart. My neph does not believe the ultrasound or the ecg. What he does know is that all of my liver functions are way into the red and I seem to be dealing with moderate to severe auto immune hepatitis, He si not happy . I have to have an ultrasound of my liver and a two week hit of prednisone to see if my liver responds. He said straight out that he really thinks that it is all to do with the same unknown auto immune disease that is attacking my kidneys. My oedema levels have moderated and he is letting me deal with it. He has given me guidelines based on weight loss //gain as to whether I restrict fluid and take one or two diuretics a day. I am feeling like crap and he has said that is a direct cause of my liver being swollen and inflamed he just said feeling bad goes with the territory. I really hate steroids. I'm hoping they don't screw with my diabetes. Ron.
I am sorry she has had so many problems.I thought I'd jump into this group. I'm mother to a 17 yo gal with Crohn's, osteoporosis, asthma, hypermobility syndrome (probable Ehlers-Danlos syndrome), seizure disorder, primary lymphedema, scoliosis, blood clots, depression, learning struggles, joint pains and HLA B27 positive. Last year she saw 15 specialists. Since September she has been hospitalized 4 times, but only once before that as a baby. Finally her Crohn's has given us a reprieve, but her seizure meds made her suicidal and she had to go on Prozac, which took away her appetite. Since December she was diagnosed with hypermobility syndrome, which has led me to research and see that Ehlers-Danlos could account for most all of her problems except the lymphedema.
Jennifer : I also have Osteopenia and I am always afraid of falling. I also take Vitamin D and Vitamin B12 daily. I do not take steroids.I'm sorry to hear that ron50. Hope the biopsy comes back clear and I hope the steroids help and don't mess with the diabetes too much. It can but I hope it won't since it will likely be a short course of steroids. Keep us posted.
I was diagnosed with Osteopenia. I'm not surprised since I had taken steroids for years at high doses when I was younger and before my GI doctors really realized the amount of damage they can do when taken long term. I wish other medications had been approved back then. Oh well. Now I have to continue to monitor my Vit D and B12 to make sure that my bones can stay as healthy as they can be. My calcium was in the high normal range so I'm alright there. I should also lift less to avoid more stress and wear and tear on my bones. I'm not looking forward to a possible broken hip in my near future. My doctor says that I'll likely have Osteoporosis by my early 40's. Damn you Prednisone! Damn you.
Ann Morgan is my old profile !Dear Valley: Okay, I am new here and I just read an old post you had written. You have really opened my eyes !
I am going through a myriad of doctors right now too. I am seeing a Urologist for a cyst on my right kidney ( I had a cyst taken off of my left kidney in 2007. I recently had an ultrasound and CT scan of my kidneys. My doctor and I will be monitoring the cyst. I told him I DO NOT want another kidney surgery unless I really, really have to have it. I don't believe I should have had the FIRST kidney surgery, but the doctors made it sound like it was life or death and I must have the surgery. The cyst was only 1.5cm and when they took it out it was benign. I will see my new Urologist every 6 months.
I have been seeing an Endocrinologist for a few years now, but never was put on medication. I had had regular visits, blood tests and ultrasounds of my thyroid. I have three nodules on my thyroid and the ultrasound showed that nodule was growing. I had a needle biopsy of the nodule and cells were taken. The cells were negative for cancer. I was just currently put on thyroid medication for the first time.
My Endocrinologist will now be in charge of my Osteoporosis. My Gynecologist used to be in charge of monitoring that, but he isn't on my new insurance plan. I have regular DEXA scans. I take Fosamax and vitamin D3. I will see my Endocrinologist every 6-8 weeks to monitor my new medication and to have a blood test.
I just saw my Rheumatologist the other day. I had seen him in 2012, but I did not have health insurance then, so I could not follow what he recommended me to do. I originally saw him in 2007 and had Physical Therapy for the arthritis in my neck. My neck pain and arthritis has recently gotten way worse, so I went to see him. Basically I am just going to go to PT twice a week for six weeks. I didn't get any pain medication. I can barely move my neck at all. I will follow up with him in a month or two.
I am seeing an Orthopedic doctor about my shoulder/shoulders tomorrow. I have joint disease in my left shoulder ( since 2010 ) and it has been quite painful since June 2014. My other shoulder is bothering me too, plus I have limited mobility in both. I am not sure what he is going to say, but the left shoulder is my biggest pain issue and I want pain medication for the left shoulder. I cannot stand the pain in that shoulder any longer. This is a new Orthopedic doctor from the one I saw in 2010.
Starting in June 2014 I have been having issues with my Ulcerative Colitis, Hip Arthritis, Left Shoulder Joint Disease and Neck Arthritis. Surely all of these things are connected but I will be seeing a different doctor for each disease/illness. When I go to each Specialist I try to explain all of the other things that I have had wrong with me since June and that I believe they are all related ( inflammatory ). I don't know which doctor is going to give me some medication for pain, but someone better do it.
I am seeing a new Gastroenterologist. I made sure my old medical records from my last doctor were faxed over to his office so that he would know my colon history. I doubt he even read those records. I saw my last doctor for 8 years ( he was not on my new health insurance plan ). I hope the new doctor can figure out my sudden constipation problem, again since May 2014 ). He is a new doctor to me and I am very nervous about the colonoscopy next week, as the colonoscopy is done in his doctor building and not in a SurgiCenter. I was very concerned about the kind of drug I would be given to knock me out during the surgery and how the "in house" colonoscopy procedure works, so I was given the phone number to the actual Anesthesiologist and I called him ! He was very nice and explained the process and what the drug was that he was going to give me. He assured me that I would be totally knocked out and not just in a light or twilight sleep.
Sorry this is so long.
I'm so happy to read your post and feel less alone. I think my first symptom before I was diagnosed with Crohn's (and probably had it all along) was heart palpitations and my heart rate gets really high just barely moving around and it scares me everytime. Add hypochrondria to the list. I've had asthma since I was a child. I identify as a highly sensitive person. If you have never looked it up might be a game changer for you.Nope, no idea. Apparently it's too mild they they don't want to bother with it either. I've had stress tests, many EKGs and a couple holter monitors but the tests never pick up anything major worth noting. So I take a beta blocker to reduce the palpitations.
My mom and her father both have really bad heart problems. My mom hasn't said that she has it (even though she takes all the meds for it) but I know my grandpa has heart disease and now congestive heart failure and had a pacemaker put in recently. So hopefully my heart will just keep it's little palpitations and minor pains to a minimum and nothing more. You guys too. Heart problems scare the crap out of me.