Re: Question about type of physician

[Guest guest]

Rose,Are you off all meds now?  I'm so glad you are feeling better, and it's good to hear from you again.  Blessings, Marla

 

Darrin, I'm one of those folks who initially had no symptoms, but had enlarged hilar nodes on a chest xray.  I had a biopsy to confirm it was sarc and not " something serious like lymphoma. "   Ha!  That was in 1994.  In 1999 I had bilateral hearing loss & my first Bell's palsy, all within 6 months. This was all attributed to viruses, I got hearing aids & went on with my life.  A year later I had sudden onset of flu-like symptoms, with major fatigue.  Over the next few months I had a variety of interesting symptoms, all blamed on--guess what?--a virus!  I felt like I had cobwebs on my face, then pain behind my eye, balance problems, muscle weakness, numbness of feet, still severe fatigue (lost 35# as too tired to eat; took all my energy to make it through work), tremors.  At that point I insisted on a neuro consult & was very fortunate to hit the jackpot the first time!  When he heard that I had known sarc & saw my hearing aids, he knew.  By that time I was having some bad coughing fits, but I had cough-variant asthma & took b/p meds that caused cough, so I didn't think much of it (and neither did my PCP).   Again it was my neuro who noticed the cough & ordered a cxr.  By then I had not only granulomas in my lungs, but some scarring & collapse of one lobe.  A pulmonologist did the lung biopsy, a pretty easy experience from my memory!  I had Versed & Demerol, plus he used an ointment with cocaine to lube my nose.  The nurses said that afterward I kept saying, " I had cocaine!  I had cocaine! "   I took Pred & Imuran for 3 years, then Methotrexate for 2 more.  The cough cleared up, but the xray never improved.  Some of my other symptoms improved, like the tremors & weird facial symptoms, but I have quite a bit of residual damage--peripheral neuropathy, memory problems, still the fatigue, balance issues, vertigo, hearing loss & shortness of breath.  I've been remission for about 3 years.  I don't dwell on the possibility of recurrence, but I do pay attention to any unusual symptoms.  I see my local neuro & pulmo twice a year &  a sarc doc at the Indiana U. Med Ctr twice a year.  I also see a cardiologist yearly for some funky heart things, although so far nobody believes it's sarc-related.

 

So that's my story & I'm stickin' to it (or as much of it as I can remember!). 

Ramblin' RoseModerator

 

" How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. "

 

~ Washington Carver  

To: neurosarcoidosis From: gphx@...Date: Sat, 1 May 2010 03:07:00 -0700

Subject: RE: Question about type of physician

Hi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.

I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a

possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn't

in the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,

Darrin

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 30 Apr 2010 22:28:58 -0400

Subject: RE: Question about type of physician 

Darrin, I'm curious as to why the PET scan rather than a lung biopsy.  I'm a few years out from diagnosis, so maybe that's the latest thing.  The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

  

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700

Subject: Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matched

Sjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. I

have an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades.

 I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and they

want to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates an

incorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. 

I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patients

are better sources of info than doctors many times. Cheers,Darrin

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