Re: Neurosarcoidosis] Re: New Member - Bahamas

[Guest guest]

Hi ,

you asked about the blood clots in your mom's lungs and groin-- yes, this can be caused by sarcoidosis. What happens is that the inflammation of the blood vessels makes the vessels narrow, and clots develop, then cut loose and end up in the lungs or heart or brain-- (the condition is vasculitis- inflammation of the blood vessels) and the result is a stroke.

It sounds like all they've used to treat your mom is prednisone and methotrexate?

There are other alternatives-- Methotrexate, Plaquenil and a biological-- Humira, Enbrel or Remicade can be very effective combinations.

It takes a combo to get this under control, and it is important to add just one medication at a time, so that if side effects happen, they can tell which med is creating the problem.

Cytoxan has been used for NS-- and it is about as effective as the new biologicals-- again, Humira, Enbrel and Remicade.

NS is an autoimmune disease, which means that your mom's immune system sees even her healthy tissue as being sick and is attacking itself.

I don't know who she saw in Ohio-- But Dr. Om Sharma at USC-LA is an expert in sarcoidosis. Dr. Baughman in Cleveland is also the USA's other expert in this disease. These are the top 2 docs who spend the biggest majority of their practice with sarcoidosis.

This is Dr. Sharma's site--http://www.sarcoidosissharma.com/

Another good site is www.stopsarcoidosis.org and this has Dr. Baughman on the Board of Directors.

I'm sorry that your mom had such a poor experience with her MD in Ohio--- does she have you listed as a contact for her medical care. If not, have her fax a release of Medical information and Records to that MD, and then call the MD and talk with him. He may have forgotten that she has to come from the Bahamas at great cost -- unfortunately, most docs don't like to go over test results on the phone, and get themselves in a huff when a patient calls for results. However, a family member who can advocate for the patient is often necessary-- and that is where you can step in once the Release of Medical Records has been received by them.

Here is contact info for Dr. Baughman.

P. Baughman, M.D. (Pulmonary)University of Cincinnati Medical CenterDept. of Internal Medicine1001 Holmes Eden Ave.Cincinnati, OH. 45267-0565

Here is a site for Sarcoidosis Specialists worldwide.

http://www.sarcoidosisonlinesites.com

The fatigue is also part of the disease. A huge part. One thing your mom has to do is stay hydrated, as the systemic inflammation means that she runs a low grade fever all the time, and what happens is that we end up sitting on the edge of dehydration all the time. Even a tiny bit wipes you out, but the constantness of this for us is so very important.

The arthritic symptoms are all part of the sarcoidosis-- and secondary to the sarcoidosis granulomas putting pressure on nerves.

I'm sorry I'm vague, last night was sleepless, as we are waiting to hear if we are going to have to evacuate our home-- and so my brain is juice today-- aarrgh--

Let us know what we can do to help, and if you have any other questions-- ask-- and if I'm not available, someone will get back to you.

Sincerely,

Tracie

NS Co-owner/moderator

Original Message ----To: Neurosarcoidosis Sent: Thursday, July 10, 2008 5:07:54 AMSubject: [sPAM] Re: New Member - Bahamas

Hi Jackie / Traci,My moms name is Jackie () as well. She is 56 years old.She also had to be hospitalized in March with 3 bloodclots, one in each lung and one in the groin. Her doctor thinks it could have come from the sarc, Is that possible? Mom can not drive anymore (doctors orders) due to dizzyness and double vision. She usually doesnt have it often, but the last week its been almost everyday. She is debilitated by the nausea. :(I am so scared for her and nothing seems to be helping. There are no specialists in Nassau, Bahamas where she lives, she went to Cleveland Clinic in Ohio, (after a HUGE fiasco with Cleveland Clinic in Florida who told her when she got there that they couldnt help her at all.) She saw a doctor in Ohio, who told her what meds to try (methotrexate) and that she (the doctor) would monitor her from there. The trip cost mom $15,000.00. And when she had

her follow up MRI 3 months later the doctor in Ohio took almost 2 months to read it and then told her that she would not be able to follow up with her and basically told her off for calling to try to get results. It was a TERRIBLE experience for my mom, and she doesnt want to go to the US again to a doctor, but I know she can't get the help she needs in the Bahamas.I couldnt Open the link from Traci with the specialists, (are there any neuro specialists at all?)The next drug on the list that they are talking about for my mom is cytoxin, has anyone else taken it? Has it helped?Im sorry I was impatient, I just do not know where else to turn.Thanks for your replies.> >> > Hello Everyone,> > > > I am trying to find out as much information as I can. We live in

> the > > Bahamas, and my mom has neurosarcoidosis. Spine / Brain are > > involved. We can not seem to find a doctor anywhere that can help > > her. > > She is on methatrexate & steroids, but is now having increased > dizzy > > spells and nausea that accompanies it.> > Does anyone know of any doctors who specialize in this?> > She has been battling this for 4 years and seems to just be > getting > > worse and worse.> > Please Help.> > > > (Bahamas)> >>