Looking for Local Michigan People with SARCOIDOSIS

• By nanner
• Posted September 5, 2008 at 6:32 am

Hi, mboater. We're almost neighbors as I am in Macomb County, too. If you are looking for a group to share with, you are in luck. There is a sarcoidosis support group at Royal Oak Beaumont that has a meeting coming up at 1 pm on Saturday, Sept. 13.

The meeting is on the first floor of the administration building, and you enter off 13 Mile at the farthest west driveway. It 's a good place to find out about doctors in the area, medication pros and cons, etc.

This should be a good time to get involved, but for a sad reason. The former leader just passed away recently, and two new people have taken the helm. So anyone in the Detroit area (we have members from Ann Arbor to Lapeer that I know of) who cares to join us, feel free!

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• By mboater1
• Posted September 5, 2008 at 7:11 pm

Thanks I would like to check into the group..
the only problem is i already have family birthday party that day..

when would be next meeting OR is there notes to be had from that one ?

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• By nanner
• Posted September 5, 2008 at 8:18 pm

I don't know if the new leaders will try to hold meetings on every second Saturday of the month, or what the plan is yet. I'm guessing that may well be the case.

Depending on the topic, there are often some informational handouts. One of the new leaders of the group is also a member of this forum, and perhaps she can fill us in what is planned for the near future.

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• By lagalbraith
• Posted September 5, 2008 at 9:49 pm

As it stands right now, I believe we have the room reserved for the next 2 years on the second Saturday of every month. This is only our second meeting since we lost our leader, so we are still trying to figure out logistics, etc. She will be a hard act to follow and we will miss her greatly.

This Saturdays meeting will mostly just be sharing of information between members. We also have some very good brochures from the Foundation for Sarcoidosis Research. You are more than welcome to join us at any of our meetings. Please contact me offline for more information. lagalbraith@yahoo.com

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• By delisa
• Posted September 7, 2008 at 10:25 pm

Hi Mboater,
I live in Southfield and have been diagnosed with Sarc in the sinus, tear ducts, vocal cords, and skin. I see the doctors at Henry Ford's Detroit Campus. My primary care is under Pulmonary - but I see an ENT, Ophamalologist, and Dermatogist. I also have them coordinate my care. I had planned to attend the meetings at Beaumont, but haven't had time. That is the only support group I know of in this area. Hope this helps. Delisa

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• By micheleb
• Posted September 8, 2008 at 12:00 pm

Hello neighbors! I live in Royal Oak, about 3 miles from Beaumont! I have to admit though that I am not at all impressed with the Beaumont docs in regards to treating my sarc or some other past medical problems I have had.

I am now under the care of a Henry Ford doc. He is on the list of docs that pops up here every once in a while. He is the head Pulmonologist at the Detroit campus, his name is Dr. Alvin Bowles and his phone number is 313-916-2421, I can also get you his email if you would like to have a quick chat with him about what he thinks your options are. He works with the docs at the Cleveland Clinic and I have found him to be the best doc by far in treating my sarc.

If I wasn't in the middle of a HUGE house painting project, I would check out this weekends meeting though. Maybe next month!

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• By angela2750
• Posted September 8, 2008 at 12:49 pm

I live in Detroit, but I work in Taylor. My pulmonary specialist is located in Taylor, my eye specialist is in Dearborn and my rheumatologist is also in Dearborn. All of these physicians inclunding my PCP in Detroit which specializes in Internal Medicine are very Sarc aware and understand my needs. You can send me an email on this website if you want more information.

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• By umftbll
• Posted September 8, 2008 at 7:07 pm

I am fairly new to this. Just got diagnosed with Sarc in July, i have it in my lymph nodes. I live in Macomb County also and am only going to my PCP right now. I have had a couple of bad days, seems like the humidity bothers me alot. I am presently looking for a DO who knows not only about Sarc but how the drugs affect gastric bypass patients. See that the crazy part for me...lost a bunch of weight, healthier than I've been most of my life and bam! Got the Sarc thing going, but it could have been a worse diagnosis, they were thinking lung cancer before the biopsy. I am grateful.

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• By DARRYL
• Posted October 19, 2008 at 8:37 pm

I too had gastric bypass in 09-2004.
diagnosed w/ sarc. last year I would like to hear more from you.

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• By BUNKIE
• Posted October 20, 2008 at 9:12 am

I live in Lansing but for some time have been considering U of M doctors or Detroit. my care here compared to LosAngeles where I am from is not good. I know about the group but have not been able to attend meetings. Glad to know it still there. I have been consumed with elderly care for both parents but now my mom has been placed into a nursing home for the dementia and I have a little free time. So now I am in a flare because of all the stress the last year. Go figure. I will try to make a meeting soon.
Bunkie

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• By BUNKIE
• Posted October 20, 2008 at 9:15 am

nanner
Was the leader Victoria? I hope not.
Bunkie

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• By nanner
• Posted October 20, 2008 at 10:23 am

Bunkie, it was indeed Victoria that passed away. Near the end she was having a lot of vision issues, pneumonia, etc. At the September meeting they had copies of her funeral program available for all to see. That woman sure did give a lot of herself for others, and not just in the sarc group. She will be missed.

The new leaders are doing their best to get things going on a regular basis again. Poor Victoria really couldn't manage a regular meeting date in the last year with all she had to cope with on her own. I think it's a good thing that we are trying more of a team approach to the group now.

I wasn't able to make the October meeting (attending a memorial bicycle ride for a friend), but plan to be at the November gathering. One thing that I don't care much for is that while Beaumont gives us free meeting space, we can only have Beaumont doctors talk to the group. It would be nice to have input from other health care providers, too. (And I'm a Beaumont system patient...)

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• By daphj00
• Posted October 20, 2008 at 10:24 am

Hi
I was diagnosed with neurosarcoid in 2001. I've been in remission since 2005. I had good care at Henry Ford Hospital. Doctors change so much, my pulmunlogist moved to New York, yet my neurologist Dr. Mary McKee is the best and she is practicing out of the Taylor campus. This disease stinks, the side effects of the drugs are awful. Be encouraged I am proof that this disease will go in remission.
God Bless

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• By jennicolleen
• Posted October 21, 2008 at 8:06 am

Hi neighbors. I live in Flushing, Michigan (near Flint) and am treated through U of M docs. So far I only have lung involvement and it is minimal...although, like a lot of you, I suspect I have other effects that docs don't attribute to the disease.

U of M is supposed to be an excellent site for Sarc. My Pulmonolgist,
Dr. Tammy Ojo, is fantastic and I would highly recommend her. I've also had bariatric surgery (Lap Band) for those other of you who mentioned you have as well.

Be well!
Jennifer

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• By BUNKIE
• Posted October 22, 2008 at 9:56 pm

Nanner
I am so sad to hear that news. How long did she have Sarc? I was wondering why she stopped writing. She really gave me a ton of info. I will try to come to a meeting. I would like to meet all of you in the group. Let me know the info if you have it on the upcoming stuff.
Thanks
Bunkie

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• By cbw
• Posted October 23, 2008 at 7:32 pm

HI,

I am Cheryl and I live in Rochester Hills. I was diagnosed some 35 years ago, no real problems until three years ago, right after my husband's death. In three years I have seen my self go down hill so quickly. Just recently my blood work was not paid attention to and I ended up in emergency. It has been almost a month and I am still so weak. I would love to know of a support group not to very far from home. I really have a problem making my family understand how sick I am, as I have always done for myself.

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• By singingwithsarc
• Posted October 24, 2008 at 1:12 pm

Hi, I live in Detroit. I see Dana Kissner at the University Physicians Specialist . (DMC). I have been diagnosed since 1999 (liver & lung) It started moderate...and over the years got worst. I think she has done all she knows and I' told her that I would be looking into seeing other doctors that specialize in this area. I will try to make the support group meeting!

Kuipiio
(koo-we-pe-o)

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• By Ruth_Mulder
• Posted October 24, 2008 at 7:20 pm

Hi mboater1,

I live on the west side of Michigan, in Muskegon.

I have sarc in my heart, skin and lymph nodes in my chest that I know of.

I have been seeing a cardiologist at U of M named Dr. David B. Dyke. He seems to know his stuff. The main problem my doctors are having is they found the sarc in my heart early so they are not sure what all to do at what point? They said I am an enigma or puzzle.

I have an appointment with an ep cardiologist ( Dr. Bogun) at U of M on November 24th. He is supposed to do testing to determine if I need a pacemaker/defriberlator.

They also had me see a pulmonologist ( Dr. Eric White) at U of M. The sarc is not in my lungs but they wanted me to see him since he is supposed to be the top expert at U of M in sarcoidosis.

I also saw a dermatologist there because my cardiologist wanted a biopsy of the rash I have on my thighs to determine for sure if it was sarcoidosis. It was.

They have me hooked up with the heart failure and transplant clinic at U of M ( I am also hooked-up with the heart clinic in Grand Rapids). The are pretty good but since they are big, at U of M, I tend to have to wait a while sometimes for some answers.

I just waited two and a half weeks to get the go ahead to start back on prednisone since I am having a lot of breathing problems and more extreme chest pain, not to mention extreme exhaustion more then ususal.

The pulmonologist is probably going to start me on methotrexate next week. He is gone this week so one of the other pulmonologists told me to start the prednisone this weekend so maybe I can get some help now? I don't remember how long it took to take affect the first time I took it? I have been off of it for 7 weeks but sick for about 5 or more of them.

After reading some of the replies to your question I wish there were a support group on this side of the state. Gas to go across the state is too expensive to come over there for a meeting. My insurance company, at least, gives me mileage reembursement for doctor appointments but it takes a while to get it sometimes.

I went for quite a while before I found doctors that would take my symptoms seriously. I kept getting told that "sarcoidosis is a desease that causes inflammation and sometimes some symptoms and then it goes away". This is not always true. A LOT of doctors believe this!

My family doctor, who is close to retirement, told me he has only had two to three sarc patients in his practice and with all of them the sarc just went away. He also never had anyone with it in their heart.

After a lot of research, and some much appreciated input from people on this site, I learned that I needed a cardiac MRI to detect if I had cardiac sarc. My family doctor listened and ordered the test and they found it.

They did a cardiac pet scan at U of M and I am having it repeated in January. They said they have to keep watching it, through pet scans, to make sure it doesn't progress.

I am early on in my crdiac treatment but so far I am happy with the care I have received and at least they are testing and doing things to help.

They at least have my heart rate and blood pressure down but I have to admit I am tired of taking so much medication. I keep reminding myself I only have one heart so I take it.

Where is your sarc at?

I don't get to the computer very often, since ours crashed, but feel free to let me know if you need anything I could help you with.

Ruther

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• By tillman9
• Posted November 17, 2008 at 5:02 pm

Hello. I am a resident of Detroit. I am currently in remission so I'm told but I deal with alot of pain. I want to know more about the disease and find a specialist because my current doctor doesn't seem to care about my problems and scheduled my appointments in February! I want to talk to someone asap to make sure the disease is not ruining my body as I speak. When and where is the support group? I am sooo there.

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• By Jaysonuop
• Posted November 26, 2008 at 1:23 pm

Hello I am new to this site, for the longest time
I felt I only had sarcoidosis and no one else well in MI atleast. Hell hafe the time the Docs I went to could not even spell it right.. I am a white male 28 I was 16 when they found Sarcoidosis in my lungs, Ive seen tons of docs and was on 4-8 medications. Ive been told I am the youngest white male in MI to get this and been tested on. Anywho I have had tons of problems and faced death a few time (real sick and in the hospital for a month) I have no Ins (thats a long story) so Ive stoped all meds and there is not a doc that will see me with out ins. I would love to go to a local group meeting to see whats out there email me with info. With a friend of mine who just died of sarcoidosis im scared im next. Email me at jaysonuop@yahoo.com

Ps: What gets me the most is when I was 16 I was tall skinny no problems at all I could do sports, I didn't and dont smoke,drugs, or drink and now I can barley walk a mile. :<

Thanks,
Jayson
Ferndale

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