sarc diagnosis--long post to Loti

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Well, here is another lonnnnggg post that started out brief! So get your tea, put your feet up & get comfortable!

Whereabouts in Texas is Madisonville? I've lived in Dallas, San & the Lower Rio Grande Valley. I've lived the past 21 years in Indiana, where I was born & mostly grew up.

As far as diagnosis, if someone has known sarcoidosis & develops neurologic symptoms, NS is likely. But they still have to rule out all other possibilities, which can be tricky. Unfortunately, there is no test that says "neurosarc." That said, however, I think too many docs just don't consider it. I was diagnosed with sarc in 1994, from a biopsy of the hilar nodes in the chest. At the time my lungs were clear & I had no symptoms, was told it would probably go away on its own. I did a little research & read all of the awful problems it could cause & thought--boy, I'm glad I don't have it in those places. I didn't understand & no one told me that sarc could pop up anywhere. I guess my docs at the time weren't aware of that fact. So 5 years later, within a 6-month period, I had severe hearing loss in my right ear, a left Bell's palsy, then hearing loss in the left ear. All of these events were blamed on viruses. I did have an MRI after the 2nd hearing loss, to r/o M.S., and also was tested to r/o syphilis. No one, least of all me, considered sarc. I got hearing aids & went on with life for another year, and then the bottom fell out--fatigue, dry eyes, incoordination, tremors, balance problems, electric shocks in my body, feeling like cobwebs on my face, and more. For 6 months my PCP blamed all of this on a virus too, after all the usual testing (mono, etc.) was negative. He told me I just needed to get on a treadmill for an hour every day & I would be fine! Yes, he actually said that. But I finally got a referral to a neurologist & he immediately suspected NS. I was only his second NS patient, so I'm actually pretty proud of him for making the diagnosis. Then as I researched NS, I found that Bell's palsy is the most common presenting symptom & it's usually on the left side! Also, that sarc has an affinity for the cranial nerves, which includes the nerves for hearing. So the clowns & bozos that saw me the year before just totally missed the boat. Oh, and by the time I saw the neuro I had developed a nasty cough. I didn't think too much of it, because I'd had a cough for years as a side effect of my b/p medicine, plus I had what's called cough-variant asthma. It was a worse cough--sometimes I'd pee down my leg, it might last for 20 min. at a time where I couldn't talk--but my PCP (a different one) said since it wasn't productive & my lungs were clear not to worry about it. At a follow-up neuro visit, I had one of my coughing fits & he asked when I'd last had a chest xray. I couldn't remember having more than one to follow up the original sarc diagnosis. He was very exasperated--"Someone with known sarcoidosis gets a bad cough & nobody gets a chest xray?!?" So, guess what, xray & CT showed not only nodules & probable granulomas, but atelectasis (collapse) of one lobe. Prednisone & Imuran cleared up the cough, but the xray & CT findings never improved & I'm still easily out of breath. So the point of all this (yes, Ellen, I do have a point!) is that several doctors dropped the ball: the original docs who diagnosed the sarc (my PCP, lung guy & surgeon who did the biopsy) didn't advise me to get follow-up xrays, especially if I developed a cough or shortness of breath, didn't tell me that sarc could develop in any organ or system at any time & to investigate unusual symptoms; the PCP & ENT who treated me for the hearing loss & Bell's palsy & never made the connection, because the sarc diagnosis was in my records; and the idiot PCP who insisted my whole problem was poor sleep habits (I was a midwife working 50-70 hrs. a week, plus call time), poor eating habits & no regular exercise routine.

Okay, maybe I still have a wee bit of unresolved bitterness here! Anyway, even good docs (my lung guy & surgeon) can make mistakes or omissions. This is why we have to be our own advocates. It's hard, it's confusing, it's unfair, but it's reality. Gee whiz, I was an advanced practice nurse with over 20 years experience in health care. I knew you couldn't just blindly follow the doctors' orders. But nearly all my experience had been in OB, so this was alien territory to me & instead of taking the time & effort to do some research, I left it up to the doctors. Not anymore! I'm not abrasive or nasty, but I'm assertive. I ask questions & I don't leave until I'm satisfied with the answers. I don't have to be happy with the answers--it's not always good news or good options--but I understand the situation, reasons for the doc's recommendations & pros/cons of treatment options. I've been able to put that assertiveness to good use with my kids' & grandkids' health issues, so it's an important skill to develop.

Wow, this was probably way more info that you expected! That's why they call me Ramblin' Rose.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rlmcastillo@...Date: Mon, 10 Jan 2011 16:48:42 -0800Subject: RE: Re: double vision

I was diagnosed with NS just a few weeks ago December 23,2010 I have had pulmonary Sarc for about 10 years now. I live in Texas just outside of Madisonaville. I am trying to deal with everything it took the Dr's 8 months of test to finally diagnose woth NeuroSarc? Does it always take so long especially since I had already had Sarcodoisis in the lungs DX for along time? Just wondering if this is unusual for the DR's to takke so long. I started my Blog recently over the weekend as some sort of therapy to journal my experience, sympoms & feeling with NS. I want to do something in my area to bring awareness to Sarcodoisis as well so i am toying with a few ideas. I am glad that I found the group I don't feel so alone now that I know others that share my same situation.

Thanks

Loti

Subject: RE: Re: double visionTo: neurosarcoidosis Date: Monday, January 10, 2011, 10:30 PM

Loti, welcome to the group. We are glad to meet you, although obviously regret the circumstances. i've not had time yet to check out your blog, but will try to do that soon. Where are you from? How long have you been diagnosed with NS? In this group we welcome any questions. We have lots of info in the archives & great resources in Links. There are links at the bottom of all group posts, including this one. Darlene has been working on the Archives, cleaning them up & deleting unnecessary posts. So just put in a subject & posts will come up. Some may not be pertinent, but just keep browsing through them & you'll find many answers to your questions. We are also glad to share our own knowledge & experience. Remember that the moderators are also ill & may not reply immediately. Give us a little time & repeat the request if no responses in a reasonable amount of time. Sometimes we just miss a post or forget to reply. Again, welcome!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sat, 8 Jan 2011 23:46:58 +0000> Subject: Re: double vision> > > > > Yes I have experienced Double vision, blurred vision & just yesterday I have been seeing things that are not there. I have had alot of memory problems as well. I am new to this group & I am so glad that I found you I started a blog today http://neurosarcgirl.blogspot.com/ as a way to use as a therapy of some sort and to help connect with others and to deal with the Neurosarc.> > >> > HI GROUP I NEED TO KNOW IF ANY MEMBERS HAVE EVER EXPERIENCED DOUBLE VISION.I > > HAVE BEEN EXPERIENCING DOUBLE VISION FOR ABOUT FIVE DAYS.I CAN'T DO ANYTHING > > EXCEPT WAIT UNTIL MY VISION STRAIGHTEN ITSELF OUT WHICH TAKES ABOUT FIVE > > MINUTES.A STRANGE FEELING OCCUR IN MY HEAD.I AM AFRAID OF IT HAPPENING WHILE I > > AM DRIVING.IT HAPPENED YESTERDAY WHILE MY HUSBAND WAS DRIVING US HOME.I HAVE > > NEUROSARCOIDOSIS ,LUNG SARCOID,SARCOID IN MY EYES AND IN MY BONES.THANKS IN > > ADVANCE IF ANYONE CAN HELP.I WILL SEE MY NEUROLOGIST THIS WEEK.> > > > > > HELEN> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >