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Thread: MS and or CNS LUPUS?

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    Question MS and or CNS LUPUS?

    Hi everyone, it's been a while i've been on the boards. I hope everyone is doing well. I was wondering if I could possibly talk to someone who also has MS or CNS lupus. As I'm going to get tested for these and I'm really scared, I'd like to know what to expect, what to ask?
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    Well, I have neurological issues, but they haven't decided to put a name to it. Basically they'd just rather treat the symptoms. So good luck, either way, your life will change, but as Lupies, we adjust and adapt.
    Hugs and Good Thoughts.

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    Hi Nonna, how are you?

    Would you mind sharing with me what symptoms and how are they treating it? I tell you for whatever reason I'm scared to death of this, I wasn't this scared when I found out I have lupus. This is literally driving me crazy! I've also been having anxiety and panic attacks.
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    hi chikititalinda,

    many of us do at some time find out that our mental state has been effected by lupus.
    and the worry is only natural ...
    we fear it will degenerate.

    I have been to many different specialists.
    I am currently seeking help from a psychologist and a psychiatrist
    I have previously seen brain specialists ...
    and had all sorts of tests and probes done.

    unfortunately for me ...
    no-one has been able to find anything abnormal
    or treatable ....
    so life goes on unassisted
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    I have balance issues and fall a lot. I also have spasms that come close to seizures. Today I found out that the vessels in my brain are having problems. As usual everything is treatable, no worries. You need to take everything one step at a time. Don't borrow worries. Wait and see what comes, then go from there.

    I've learned this over many years. Try and have patience and above all go with the flow.
    Hugs and Good Thoughts.

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    Thank you Nonna, I'm sorry you are having these issues and hope it goes away you don't need anything else either. I go tomorrow to see an opthoneurologist (sp?)
    and tuesday I get the results from the MRI, I do tend to worry but you are right, I have to slow down. I'll deal with whatever comes up, when it comes up.
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    let us know how it went with your appointments and how you are doing.

    peace and blessings
    namaste
    saysusie
    Look For The Good and Praise It!

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    hi everyone, hope you are all blessed I was admitted into the hospital, they where concerned I was exhibiting MS symptoms. Honestly I had been thinking the same thing for a while....I have a lot of neurological symptoms some too embarrassing to talk about. Long story short my Doctor FINALLY called with results, what she said was that I do have lesions on my brain (i already knew that) although Not consistent with MS, she can't treat me for MS, but she can't rule it out either....time for a SECOND opinion. I'm no ones guinea pig. I need someone that's not going to be guessing... I've been soooo stressed out I'm hardly able to function I don't know how I've managed to get by on work, don't know how much longer I can continue. I've sent my records to a second neurologist and have contacted John hopkins. Lord knows I don't want to have MS, I don't need nothing else, but I need someone that truly understands what's going on with my body and knows how to treat it. I'm going to see my Rheumy today and fill her in. I also have Sjrogen's which I've heard can mimic some of these symptoms, is the others i'm most worried about. Anyway this is a closed group and maybe you guys can shed some light the thing that's concerning me the most, is that I've lost control of my bladder several times during my sleep and even my bowels on two occasions : ( this is extremely embarrassing and difficult to talk about. But it's so hard for me to even sleep thinking im going to have an accident while my hubby is laying next to me I would be heartbroken. I feel like my body is breaking down on me and I can't control it. When I get up in the mornings my body shakes uncontrollably until I can regain my balance.
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    Hi Chikititalinda;
    First, let me say that fecal incontinence is not that uncommon in women. One of the main reasons is due to injury of the pelvic floor due to childbirth (it may not show up until years after childbirth). This condition can also be one that we've had since birth but presents itself as we get older. Other causes are constipation, rectal prolapse, trauma or injury to the anal sphincter or nerves, diarrhea, or scarring of the rectum from radiation therapy. You did not mention if you also have a problem with constipation. Alternating pattern of constipation and diarrhea is much more likely to be due to the irritable bowel syndrome, a relatively common disorder which is not linked to lupus - however it is one of the primary symptoms of Fibromyalgia. Have any of your doctors tested you for this condition? It is, unfortunately, quite common for Lupus patients to also develop Fibromyalgia.
    Gastrointestinal issues in Lupus are usually due to inflammation of the blood vessels in the bowel wall and an occasional involvement of the pancreas and liver. Also, many of us develop Crohn's Disease. This disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn's disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn's disease often spreads deep into the layers of affected bowel tissue.
    Another issue that is found in Lupus patients is an overlapping disorder known as systemic sclerosis. This disorder an cause constipation, diarrhea, collagenous colitis, irritable bowel syndrome (IBS), malabsoption, diminished peristalsis, and bowel incontinence. It can also overlap with Crohn's disease and ulcerative colitis. It is typical, in the initial stages of scleroderma, to suffer from chronic constipation, sometimes alternating with diarrhea. Late stage scleroderma bowel involvement is often marked by diarrhea, malabsorption, and bowel incontinence.
    I cannot say if any of the above are what is causing your condition. However, these are things that you may want to suggest to your doctor and request that they run tests to determine the exact cause of your issue.
    Your shaking in the morning may have nothing to do with your Lupus. This is definitely something that you will need to discuss with your doctor. Please let us know how it goes and I wish you the very best.

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

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    You are so knowledgeable Saysusie! Thank you for your reply, I have do have IBS and Fibro (diagnosed) my son has UC and Crohn's so I do know a little bit about both. All of what you say does make sense but I'm only 40 if that means anything. I guess when I think of things like that I picture a very old me, bedridden but I have to remember lupus doesn't care what age one is. I'll definitely keep you posted. Your post was very informative.
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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