A Support Network for people with both Neuroimmunologic Disorders and Rheumatic Disorders

Hello!  My name is Sharon Robinson and I’ve volunteered to be a Support Group Leader for those of us who have both neuroimmunologic disorders (TM and NMO) and rheumatic disorders (Lupus, Sjogrens, Sarcoidosis).  I have TM and Lupus.  When Sandy asked me to write a little bit about myself for the newsletter, I started to launch into yet another version of “How I got TM.”   It seemed only natural since (a) this is for the TMA, and (b) TM seems to occupy 90% of my mental energy some days.  But instead, I thought that I’d start out by writing about who I am and what I do – because we are all individuals with lives and families and hopes and dreams, besides having TM. 

I was born and raised in Northwest Ohio, but after going to college in Syracuse and Milwaukee, I moved to Bellingham, Washington, a small-to-medium sized town about 80 miles north of Seattle.  I am an owner and principal in a busy 16-person architectural firm.  We do all sorts of projects from custom homes to schools, fire stations, office buildings and condominiums.  In addition to my work, I am on the City Planning Commission, the board of my Rotary Club and volunteer for a couple other community non-profits.  I’m almost 48 years old.  (Hey, “almost” is important when you start getting this close to the big Five-Oh!)   I live in an 80-year old constantly-being-remodeled house with Greg, my significant other, and Milo the Great Pyrenees (that’s the dog, not the mountain range, although he sort of resembles a hairy white mountain, if a mountain could bark).  We also share the house with Peep the lovebird and Birdie the African Gray parrot.

Some of my passions are SCUBA diving, kayaking, gardening, and (usually) Seattle Mariners baseball (but we won’t talk about that this year).  Before TM, I was learning Irish step dancing, and I guess my one-quarter Irish blood must be strong, because the latest hobby I’ve taken up is learning to play the harp.  Something about Celtic music appeals to me, and it’s a very relaxing and de-stressing pastime.

OK, enough about me. Let’s get back to TM.   I want to commend Sandy for taking the initiative in organizing these various sub-groups of TM’ers.   I know how hard it is when it feels like there is no one else in the world who has the same condition you do.   For a while I thought that really might be true!  When I was attacked by TM in March of 2006, it was enough of a struggle to try to find anyone who had even heard of TM much less anyone who had it.  Thanks to the wonders of the internet, I found the TMA, all the fantastic information on their web site, and best of all, the site’s forum, where there were dozens of other people just like me, trying to come to grips with a weird new malady and being supported by many other people who’d had TM for years, who could offer us support and understanding. I’m still a fairly active participant on the board, and try to help respond to the newcomers who are more often than not in a shell-shocked state.  I post under the pseudonym “Sheryl” because I’m a little reluctant to post my full real name in public forums, but now you all know the secret identity of Sheryl!

During the month after my attack, I made the usual rounds of specialists and tests.  Most of the people I saw focused on MS.  Because my first attack was relatively mild, and because there is such a cluster of MS in this region, it was almost assumed that my TM was the first sign of MS.  My primary provider even sat me down and had the standard, “learning to live with MS” talk, complete with informative brochures.  However, none of the other symptoms that would have confirmed or even pointed toward MS were present.

I was referred to a rheumatologist, because some specific antibodies in my blood work made my primary care provider suspicious.  The rheumatologist confirmed what we had already started figuring out.  It sounded like the punch line to a bad joke:  “The good news is you don’t have MS.  The bad news is you have lupus.”  It was also explained to me that the high levels of the anticardiolipin antibody in my blood indicated that I probably had another autoimmune condition, antiphospholipid antibody syndrome (called APS in the US, and APLS or Hughes Disease in the UK).

Sheesh!  Now not only did I have this rare few-in-a-million thing called Transverse Myelitis, but I was one of the small percentage of cases that is caused by an underlying autoimmune disease.  To fast forward a little bit, I found out in October of 2007 that I am also one of the even-more-rare cases of recurrent TM.  My symptoms of the first attack were only sensory – numbness, pain and loss of proprioception.  But last fall I started to develop weakness in my right leg, and over the course of about four days, it became completely paralyzed.  My doctors said it was clear my immune system was running amok, and we decided to try six monthly doses of the chemo drug, cyclophosphamide (Cytoxan).  While still on that drug, I had a second but more mild relapse. In April of this year I was able to go to Baltimore to consult with Doctors Kerr and Petri at Johns Hopkins.  They recommended that I begin taking CellCept, an immune suppressant given to transplant patients.  Since then, I’ve had no relapses (knock on wood), and have regained most of the use of my leg.  It’s still weak. I walk with a limp and can’t run (yet), although I’m still hopeful that I’ll get back enough strength for that.

So, that’s the story.  I have this weird form of lupus that causes no other typical lupus symptoms but goes straight for the spinal cord.  Thanks to Sandy and the TMA, I know that there are others out there like me – or at least others whose TM is caused by or overlaps with lupus or one of the other rheumatic disorders such as Sjogren’s disease or APS.  We’ve decided to start this group in order to support each other and any new members of the TMA who indicate that they are interested in reaching out to others.

I currently have a list of 21 people who have requested to be included in the Neuroimunologic/Rheumatic Disorders Group, and Sandy will be relaying to me the names and contact information of new members who indicate an interest in our support group.  Of course, anyone reading this who would like to be included is encouraged to e-mail or call me.  I plan to contact new members to “welcome” them to the TMA and let them know about our support group.  I also plan to contact everyone I have on the list now by e-mail in order to make sure our information is current and that they still want to be included in the support group.  If you haven’t received an e-mail from me by the time you read this, and you would like to join the support group, please let me know.  I’d also like to hear what support group functions would be most useful for everyone. 

I’m new at this role, so I’m looking for input and ideas from anyone who has suggestions.  In my mind, the purpose of the group is to support each other and share information about our own experiences.  I also want to keep the group informed of any research that is going on in our areas of interest, and to let you know about upcoming TMA symposia or other events in your area.    

Jim Lubin has set up an area for us on the TMA message forums:
http://myelitis.org/forum/viewforum.php?f=98
This will allow us to communicate with each other in addition to using e-mail, phone and/or regular mail.  We certainly are a diverse group - of the 21 folks now on the list, we are spread to all four corners of the US and three other countries, as well.  There are five TM/Sjogren’s sufferers and 16 who report having lupus and TM. 

I’m really looking forward to getting in touch with our little community and hope that we can all help to create a supportive network for each other!

Sharon Robinson
2716 Walnut Street
Bellingham, WA  98225
(360) 671-8415
rufusandchi@yahoo.com