Re: Roll Call! better late then never?

[Guest guest]

Joan,

Who did you see at the U of Penn. They are still trying to

diagnose my husband and they are thinking of sending him to the U of

Penn. Did you have a good Dr. Did he seem to know what he was talking

about? My husband has been having alot of trouble in the last 8

months. Severe leg pain with brown spots on the lower legs. Muscle

weekness, legs jump at night things like that. Can you let me know.

Michele

> Hey everyone,

> Let's have a roll call to let everyone know we are ok! the

list is

> very quiet and we have not heard from some of you for quite a while

> and we DO worry about you all. It is not that you HAVE to

> post....this list is not like that - we do not require that you

post -

> but we like for you to so we can get to know you all and also so

that

> we know you are ok or that you need our prayers or that you need

> someone to talk to.....whatever....just know that we DO care and

that

> you are on our minds.

> We have 262 or so members and the list is soooooooo

quiet..........

> let us hear from you....if you are too sick to say much, just

say " I am

> not doing well " or " I am really sick " and sign your name. That

way, we

> will know how you are doing.....

> Much love and prayers to all,

>

> Darlene

> NSModerator/Owner

[Guest guest]

Hi Michele,

I had one of the countries' top thoracic surgeons ... Dr. Larry Kaiser. He is very knowledgeable in the "lung" area ... he is also more knowledgeable, although not his area of expertise, in the signs of sarcoidosis. Not one doctor ever mentioned that lesions on the shin were another sign of sarcoid ... and many doctors saw me with my right shin covered in them; the lesions were originally diagnosed, via several biopsies, as vasculitis due to a "drug eruption" (which really confused me as except for an occasional Tylenol or aspirin, I took no other meds at that point). One biopsy also "possibly" identified the lesions as lichens planus (I recently read somewhere that sarcoid lesions can sometimes be misdiagnosed as a lichens dermatitis).

My pulmonary specialist sent me to Dr. Kaiser to get a firm diagnosis of either lymphoma or sarcoid ... my lungs were really bad (although, thankfully, much improved now, but has since turned "neuro") -- my chest x-rays and CT scans were really ugly -- doc's later told me the films were the worst sarcoid in the lungs they ever saw. I walked (and felt) as if I were 100 years old (I was 37 at the time) ... my ankles and wrists were really painful and swollen and hot to the touch; I had fevers all the time; always sweating; no energy, loss of weight, blurry vision and complete loss of vision on 3 occasions, high SED rate, abnormal T-1 cells (lymphocytes, AKA white blood cell count) -- however, my ACE levels were normal during days of testing. I questioned the doctors about that ... they indicated that although ACE levels are often abnormal with sarcoid, especially neuro-sarcoid, ACE levels can be normal in sarcoidosis.

During my consultation with Dr. Kaiser ( for appt.; another phone number is on his business card also, ), he told me, due to the shin granulomas (lesions), he was pretty confident it was sarcoid, but that he would be remiss if we did not confirm via biopsy. Before I even woke up from the anesthesia, my boyfriend already was spoken to by Dr. Kaiser with a firm diagnosis of sarcoid. The surgery was a one-day, in/outpatient surgery. I was out of work for 1 week ... I had a little sore throat for a few days ... I have about a 1-inch scar down about 1/2 inch from my throat.

Be prepared to sit in the waiting room for 1-2 hours ... but he is worth it. While waiting in the room, I talked to several other patients ... Dr. Kaiser performs miraculous surgeries ... one man had Barrett's (sp?) disease ... as did his mother. His mother already had her esophagus (sp?) removed and was living well; the man I spoke to was told by Fox Chase there was no hope. This man went to Dr. Kaiser who literally saved his life. I also spoke to another family. The father was told by another doctor he had a thoracic-type cancer (I forget which kind) ... the daughter went on line that evening to find a thoracic oncologist ... she e-mailed Dr. Kaiser that evening, received a response, and due to the severity of her father's diagnosis, received an appt. for the next day. It was probably one of Dr. Kaiser's students who arranged this, but it is nice to know that one can e-mail a specialist of this nature and receive an immediate response.

There is another expert doctor at UofP, Dr. Ebstein or Epstein, Professor of Medicine, Chief of Pulmonary and Critical Care Medicine at UofP. I learned about him through a video tape purchased for about $25.00 -- called, I believe, "The Medical Mile - Living with Sarcoidosis - The Mystery Disease", which I purchased via the "NSRC", National Sarcoidosis Research Center" website -- http://www.nsrc-global.net/. The show is hosted by a Dr. Hester Sonder. http://www.nsrc-global.net/drhester.htm; the show also guests the founder of the NSRC, Sondra Conroy, and actress, Duffy ... both of whom are victims of sarcoidosis.

This tape was made several years ago, so the info may not be as up-to-date as any further info out there today, but it is informative to the patient and the family.

Hope this response wasn't too long!

Hoping and praying your husband feels better soon,

Joan (pickstands@...)

[Guest guest]

Hi All---

Sorry I haven't responded to this earlier. I've been pretty tired and sleep a lot this summer, plus I added zoloft to my meds. I see my primary sarc doc this week, so I hope to learn something.

I tried to get into chat a few times recently and never could find anyone there. Guess we have lots to keep us busy.

I hope you friends have had calm summers.

Bless you all!

Kay Pullen

[Guest guest]

Hi, Kay. Hope you feel better as the weather cools off. The heat this year has been almost intolerable for me. Could you send the info again on the sarc conference? My e-mail was messed up & the message was all gibberish. Thanks! Rose

Re: Roll Call! better late then never?

Hi All---

Sorry I haven't responded to this earlier. I've been pretty tired and sleep a lot this summer, plus I added zoloft to my meds. I see my primary sarc doc this week, so I hope to learn something.

I tried to get into chat a few times recently and never could find anyone there. Guess we have lots to keep us busy.

I hope you friends have had calm summers.

Bless you all!

Kay Pullen~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database