Hello from Louisiana

carebear70 · Posted: Sat Jul 12, 2008 7:09 pm Post subject: Hello from Louisiana

Hi All,
I am a 38 y/o mother of 2 children. I started having various health problems in October of 2005 such as weakness, bladder problems, flank pain, joint pain, numbness, optic neuritis, fatigue, burning pain in muscles, malar rash, dizziness and foggy brain.

Generally I deal with a symphony of pain in various parts of my body along with fatigue. I enjoyed about a year of feeling really great. But then it all came back.

So, they have done MRI's to rule out MS and also spinal tap. But I don't have lesions except for the optic neuritis. But I do have a positive ANA. I haven't been able to see a rhematologist yet because there is a lack of doctors in this area in general. On Monday I am finally going to get in to see a neuro-ophthamologist. So that is good.

I want to learn more about Lupus because I definately have many of the symptoms. Right now the only real diagnosis I have had is recurent Optic Neuritis. I have learned a lot about MS and am a regular on MS World now. I hope that I do not have either disease and I hope that I don't have both. But like I said, it just keeps coming back and getting worse each time.

Glad to join you all.

KathyW1958 · Grizzly Bear Joined: 12 Jun 2008 Posts: 702

Hi Carebear,
Welcome to the site. There are a lot of really good and knowledgeable folks that come here and there are a lot of us with Lupus. I have had Lupus for most of my life. I hope that you can get into see a Rheumatologist and I hope the Opthamologist can help aide in getting you to a Rheumatologist. Do you know what your ANA Titer was? I mean the pattern and count? I am wondering if you may also have Sjogrens with it. A lot of the symptoms that you have are also seen in Sjogrens. I hope that I have helped in some way. God Bless.

Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Mon Jul 14, 2008 9:33 am Post subject:

Hi Carebear70;
Welcome to or family Laughing

As Kathy mentioned, some of your symptoms sound a bit like Sjorgen's Syndrome. Lupus is an auto-immune/connective tissue disorder. Unfortunately, having one auto-immune disorder opens you up to developing another (or several others). What happens is what doctor's call "overlapping diseases". For instance, I have Lupus, Fibromyagia, Raynaud's, and several others.
The connective tissue diseases are a family of closely related disorders. They include: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE or lupus), polymyositis-dermatomyositis (PM-DM), systemic sclerosis (SSc or scleroderma), Sjogren's syndrome (SS) and various forms of vasculitis.
It is important for those with lupus to be aware of the symptoms that might indicate the development of "overlap" features, since these symptoms and abnormalities may be best managed with treatments not typically used for lupus. Fortunately, when an overlap syndrome is present, the symptoms characteristic of the other connective tissue diseases involved are usually mild and not life-threatening. Sometimes, patients are actually diagnosed with "Mixed Connective Disease Disorder" which is classically considered as an overlap or mix of three specific connective tissue diseases: SLE, Scleroderma, and Polymyositis.
There is another condition known as Undifferentiated Connective Tissue Disease (the connective tissue diseases are those that I outlined above). When the conditions that you are presenting have not developed the classic features of any one particular disease, doctors refer to them as undifferentiated connective tissue disease. This name implies that the characteristic features that are used to define the classic connective tissue diseases are not present, but that some symptoms or signs of a connective disease do exist.
Now, I cannot say if you do or do not have Sjogren's Syndrome, but I am going to provide you some information about it for your edification:

"Henrik Sjögren was a Swedish ophthalmologist and the first to recognize that dry eyes and dry mouth were often found in people with connective tissue diseases. These symptoms are caused by the accumulation of immune system cells (lymphocytes) in and around tear and saliva producing glands. The build-up of cells disturbs the function of these glands and leads to reduced production of tears and saliva. This condition also interferes with the protective mechanisms of the eye and mouth. Eye inflammation and ulcers of the cornea, as well as fungal infections of the mouth (thrush), occur with increased frequency in those with Sjogren's. Rarely, a person with this disorder develops a malignancy (cancer) affecting the lymphocytes (lymphoma). Today, Sjogren’s syndrome is itself accorded the status of a distinct connective tissue disorder.
Sjogren's Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren's-related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with "neonatal lupus." Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).
The best treatments for Sjogren's Syndrome include: artificial tears (usually satisfactory) and either artificial saliva (most often unsatisfactory) or a saliva stimulant such as pilocarpine, and hydroxychloroquine (Plaquenil). Eye drops containing cyclosporin have also just been introduced and have significant benefit for dry eyes in some cases. Arthritis, fatigue and skin rash in people with Sjogren's is often treated with Plaquenil."

I hope that I've been able to answer some of your questions or give you information. Please let us know if you need anything further.

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

laurid8967 · Posted: Mon Jul 14, 2008 12:41 pm Post subject:

Hi Carebear and welcome -
You have been give alot of dependable info here - you can always count on that. I just want to mention that in MS, optic neuritis can very often occur before any lesions show up. THere are other diseases in which optic neuritis is a symptom, but it is most often associated with MS. The other symtpms you have mentioned are all other symptoms of MS - dizziness, bladder problems, flank pain, faitigue, numbness, etc.
Whatever happens, keep a journal of your symptoms. The symptoms of MS can be present long before any lesions show up on either a brain or a spine MRI. In can go in reverse, as well, and people can have NO symptoms, but have lesions. MS is another auto-immune disease, and like others can be very insidious and tricky.
Be persistent with your doctors..and let us know what happens..
Lauri
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God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Oluwa · Posted: Sat Jul 19, 2008 12:13 pm Post subject:

Hi Carebear...

Welcoming you with open arms...you can learn oodles about Lupus here. Much experience with it here and what we don't know we try to point you in the right direction...

How did you neuro-ophthalmologist appointment go?

Welcome again, and hope you become a regular here...

Keep looking for your wellness,
Hugs,
Oluwa
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