Rose's story--it's lonnnnng!

[Guest guest]

Rose’s story Spring of 2006, (updates March 2007)

Brief intro: I am 57(now 58), divorced 10 yrs. after 22 yr. marriage. I have 3 grown kids, 30, 35 & 36. The youngest (a son) is married (now separated), with 2 stepkids. My girls are both divorced, with 5 kids between them. My oldest granddaughter, , has lived with me for 4 years. It's been a roller-coaster. She is not a bad kid, but makes incredibly bad choices. She just recently was returned to the Indiana Girls School (incarcerated) for parole violations. I am at the end of my rope with her. I don't want to cut the rope, but somebody is going to have to do something. (March 2007 update: Sam is now a fugitive from the law, with theft & mail fraud charges on her. Long story) Well, anyway, after about one year of med-surg nursing, then 10 years of labor & delivery, I became a nurse-midwife. I worked 2 years in Mississippi, then 4 in Texas, moved back to my home state of Indiana & worked 14 more years as a midwife before having to retire on disability. My last birth was my niece's baby boy, Trent, who just turned 3.

As my signatures indicates, I'm not often speechless. I will try very hard to condense this saga. You might want to just skip down to the *****. Anyway, in March of 1994 I had a lingering episode of atrial fibrillation (heart arrhythmia). While working me up for that, it was discovered that the hilar nodes in my chest were enlarged. I had no symptoms, other than the atrial fib, and my lungs were clear. They said it was probably sarcoidosis, but I needed a biopsy to be sure it wasn't lymphoma or something else "serious." The biopsy showed sarc, I had a lung function test, some blood tests, no sign of sarc by those, or by the cardiac echo for the arrhythmia. All my doctors told me that it usually goes away on its own & doesn't cause any problems. I had been an RN for 23 yrs. at that time, & had a vague recollection of hearing about sarc. I did a little research through our hospital medical library & read about all the awful places you could have sarc--eyes, heart, brain, etc. I was very grateful that I didn't have any of that, but didn't realize that it could pop up later in any of those places.

I went on my merry way. I had been a certified nurse-midwife for ten years then, working long hours, but loving it. In June of 1999 I had sudden hearing loss & vertigo in my right ear. My family doc said it was from a virus, no treatment would help & the hearing loss was permanent. He didn't send me to an ENT (ear doc; I don't know if you use the same abbreviations, so pardon me if I'm too repetitive.) because "there was nothing to be done." Well, I should have known better, but I believed him. Then in Nov. I had a Bell's palsy on the left side, which again was blamed on a virus, but this time I did some Internet research & found that treatment with Prednisone as well as Acyclivir was recommended at most centers. Ol' family doc didn't want to give me anything, because "80% of these just resolve on their own." I told him that was fine, but I didn't want to be one of the 20% stuck with permanent damage, wondering if the drugs would have helped. I badgered him until he ordered them. It resolved within two weeks. Meanwhile I did some research on sensorineural hearing loss, even talking to a doctor at the Univ. of Tennessee who was doing research on it. He was surprised that my family doctor didn't order Prednisone or at least send me to an ENT. He said a large number of patients regained some of their hearing if treated right away. This knowledge came in handy, because one month after the Bell's palsy, the hearing in my left ear went! No vertigo this time, but I was panicking. I had just gotten a hearing aid for the right ear ($1600--all out of my pocket) & was struggling to communicate with my patients. My doctor was out sick, so I asked an internist friend & he immediately called an ENT, plus set me up for a brain MRI the next day. This was just a few days before Christmas, so these were done as a personal favor to him. The ENT was surprised that I wasn't given Pred or an ENT referral with the first hearing loss and gave me a 10-day course of Prednisone. The MRI was normal--they were looking for MS. No one thought of neurosarcoidosis, including me. I got another hearing aid, and bumbled along for another year. The last day I felt normal was Halloween of 2000. I dressed as a hippie & ran all over the hospital with my flower child sign. The next day my eyes started itching intensely--no redness or discharge. I just wanted to run a hairbrush over the lids! Benadryl did nothing. The next day I started running a fever, feeling exhausted & weak. The itching gradually resolved, to be replaced by a feeling that I had cobwebs on my face. The fever left after a few days, but the fatigue never did! All my energy went into work & I took naps all the time at work. I lost a lot of weight because I just was too tired to eat. When I did eat, it was cereal, a sandwich or a microwave pot pie. I finally took some cans of Boost (protein drink) to work. At lunch break, I'd chug one down, then lie on the floor & sleep until the first afternoon patient was ready. I had every test run that they could think of, all negative. I had switched family docs before this all happened, after the ear stuff, but the new guy wasn't any better. He told me that there was nothing wrong with me that an hour on the treadmill every morning couldn't cure! Still, nobody connected anything to sarcoidosis. As the months passed & I was still sleeping more than I was awake, he kept telling me that it was a virus. I was so sick of hearing "It's just a virus!" Aaaaaaarrrrrrggggghhhhh! Anyway, I began tipping over, falling out of chairs, having tremors & was given a referral to a neurologist, who immediately suspected that I had NS. He was astonished that no one else had considered it. So he did another MRI, spinal tap & a bunch of nerve conduction exams. All normal! So he didn't want to treat me. I think he believed 100% in his heart & his head that it was NS, but he wanted some kind of lab test to confirm it. So a year passed, with another Bell's palsy on the left, which did not resolve completely. After working with a speech therapist, who used electrostimulation on my facial muscles, the residual damage is not noticeable to most people, but I can still tell. I can't close my left eye as tightly, etc. I also developed a nasty cough & saw a pulmonologist. A chest CT showed nodules in both lungs & collapse of the right middle lobe. So he wanted to start Prednisone for that, after doing a lung biopsy, which showed sarc, nothing else. Anyway, I learned that there was a NS specialist in Atlanta, Georgia, at Emory Univ. and there was a midwifery conference coming up in Atlanta! So I got an appt. with Dr. Stern during the conference, so my plane fare & hotel were covered under my continuing ed expenses. My insurance wouldn't cover him, so I paid $240 for the consult. But it was worth it. He did a very thorough exam, looked at my records & my history & said that I had NS, with peripheral neuropathy (oh, yeah, by then my feet were numb & burning). When I got home I copied his notes and highlighted every place where it said neurosarcoidosis, neuropathy, cranial nerve involvement, etc. and took it to my doctor's office. I gave it to the nurse-practitioner that works there & asked her to shove it in his face. She laughed & said she'd make sure he read it. I never saw that bozo again; apparently I wasn't the only dissatisfied patient there.

*****Okay, here are my current symptoms and/or organ involvement: lungs (mild); severe peripheral neuropathy of the feet (can't walk/stand for more than 10-15 min.), beginning neuropathy of the hands; bilat. hearing loss; residual from 7th nerve palsy; residual pain in left eye/cheek from 5th nerve damage (trigeminal neuralgia); persistent generalized fatigue; muscle weakness of all extremities; memory dysfunction; difficulty focusing/concentrating/organizing/finishing tasks. That's all I can think of right now; probably missed something. I also have severe degenerative disease of my lower spine, with two protruding disks, spinal stenosis, spurs, etc. Most of that is probably from 30+ years of nursing & poor body mechanics. I get severe muscle spasms with more than a few minutes on my feet. A back brace helps a little. Between my feet & my back I can't stand or walk more than a few minutes. Sometimes I go into a store & there aren't any electric carts available, so if I only need a few things I'll just use a regular cart. At least I can lean on it. But usually by the time I'm checking out, I have to actually kneel in front of the cash register to write a check or whatever! I just can't stand any longer. I just rented a scooter for a month & I want one really bad. It gave me a taste of what I could do, like going to the zoo or the State Fair with my grandkids. While I had the rented scooter, I went with my daughter Theresa (Sam's mom) and her two youngest kids, plus my niece Sharon & her husband & two kids to the Children's Museum in Indianapolis. I couldn't have done it without the scooter. We had a blast. If you ever get to Indianapolis, try to make it to the Children's Museum, even if you don't have kids with you. (I also rented a scooter for the day at the Indiana State Fair. I had a wonderful time. I hadn’t been able to go to the Fair for 3 years. I don’t qualify for a scooter through Medicare, so I am buying a used one.)

Now I’m being worked up for chronic kidney disease and being seen at the Indiana Univ. sarc clinic in Indianapolis, but treatment other than Mtx is on hold until the kidney problem is figured out.

(March 2007 update: pretty much the same, except I’ve experienced severe depression for the last several months. I’ve had some med changes & it’s better.)

Anyway, that's my story & I'm sticking to it, unless someone gives convincing evidence otherwise

Ramblin' Rose

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