New Member

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Hi everyone, my name is Fran and I have just joined the group. I can’t tell you how happy to find this group. I am 56 years old and live in Virginia (USA). I am single with no children. I have to apologize in the beginning because it is so long. I was (finally) diagnosed with hyperaldosteronism last October by a nephrologist. He ordered an MRI of my adrenal glands and said that he does not see a tumor so he started me on 25 mg Spironolactone. I have had high blood pressure since 1989 but it was easily controlled with a beta blocker and a diuretic. Then in the spring of 1998 my BP started going up gradually and nothing would help. In May, 2000 it suddenly jumped way up. I was finally put on nifedipine (calcium channel blocker) and it helped a lot but my BP was still much too high and I started having problems with my feet swelling. They were also hurting and feeling numb at the same time. I was taken off nifedipine and put on an something else but my BP went way up again so my doctor put me back on it. I am fortunate to have good insurance and I don’t need a referral to see a doctor. I changed my primary physician and also saw two cardiologists who did have a clue as to what was wrong, but had a lot of drugs to treat it. Most of them didn’t work and many of them sent my BP higher. I thought from the beginning that my BP might be hormone related but, unfortunately, I picked the wrong endocrinologist. He did a test to see if I had a tumor and it came back negative. He said that he couldn’t do any more tests because I was taking too many drugs. Finally I went back again last year to see if he could find any reason my BP was so high. Since I was off of the ACE Inhibitor, he did a renin-aldo test. He said that the renin and aldosterone weren’t balanced but he didn’t think it was a problem since they were both within normal limits. I asked if he thought I should see a kidney specialist and he said no. I blame him most of all because when I went to a new doctor, I told them that I had been to an endocrinologist and didn’t have a tumor. When I started seeing a new doctor, I always gave them a paper that I wrote listing all of the drugs I took and the results and side effects. I am very happy with the nephrologist I am seeing except that he is going very slow with Sprironolactone. Finally last week he increased it to 150 mg. My BP has been doing pretty good but there’s still room for improvement. It has been out of what I call the danger range since the first of the year. However while the BP is doing good, I have a lot of other problems and I wonder if they are related to hyperaldosteronism. Many of them started within a few months of when my BP first went real high. My biggest problem now is my feet. When I started taking the nifedipine, I started having a burning sensation in my hands and feet. I figured it was a side effect of the drug and just lived with it. Sometime later, I don’t know just when, I noticed that my feet hurt when I was on them for a couple of hours. Then they started swelling and my doctor took me off of nefidipine and put me on something else. After 2 or 3 weeks, my feet felt normal but my BP was way up again so I went back on the nefidipine. The burning started again shortly after I took the first pill then about a week later they started hurting really bad on the bottom. I hung in there until I retired the end of 2001. Then I wanted to do all the things I wanted to do but didn’t have the time to do. After going off nefidipine for good about a year ago, my feet gradually get a little better and then some doctor would give me something else that made them worse. I went to see a neurologist and she ran a bunch of tests and decided that even though I don’t have diabetes, I have diabetic neuropathy and that I must lose weight and exercise to avoid getting diabetes. When I went first went to the nephrologist, he did a bunch of tests including an A1C which tells the average blood sugar for the past 3 months. That was normal so I don’t see how I can be having this much pain from diabetes. I finally gave up with her and went to see another neurologist with more experience. He ran a bunch of tests and said that I have a neuropathy and since he can’t find anything wrong, he assumes it is diabetes. Everyone says that they are finding a lot of people with diabetic neuropathy years before they have diabetes. My new internist (who I only saw 4 times) jumped on that bandwagon right away. All he can do is lecture me to lose weight and exercise. Finally yesterday I went back to the internist that I was going to when all of this started. He said that he has friends who have neuropathy and they don’t have diabetes. I asked if they knew what caused it and he said no. He suggested that I go to a teaching hospital like s Hopkins. I have found some things on the internet that said hyperaldosteronism causes neuropathy but need to do more research. I am first going to try to e-mail someone at s Hopkins and see if anyone can help me. It is about 60+ miles away but there are other teaching hospitals closer so I may try there also. I need to find a neurologist who has experience with hyperaldosteronism. My feet start to get better and then someone gives me a drug that makes them worse again and I don’t know what is causing it. Since they all think it is diabetic neuropathy, I assume they wouldn’t give me a drug that would make it worse.. I think it is sodium related because the day after I started spiro I noticed that I could be on my feet longer. Then they improved again the day after I started 50 mg. I was getting to the point were I could go for a 20 walk and still get a few other things done when a neurologist prescribed Zoloft for hot flashes and the burning started again about an hour after I took the first (and last) pill. That is when I went to the second neurologist. By the time I saw him, they were getting a little better again and he prescribed Neurontin. I took it a couple of days and didn’t have any burning but the other pain was worse again. It feels like the balls of my feet are inflamed, but doctors say I don’t have an inflammation. That is why I went back to my original internest. Now, I can only stand on them for about 20 minutes. Does anyone else have pain and numbness in their feet??