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    Default Hi, I'm new here.

    I've been diagnosed and living with SLE since 2004. Things got a little tough this year physically and I've had a few severe flares that knocked me back pretty hard. I'm hoping to get to know anyone else that might be dealing with CNS Lupus also.

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    Hi Little Red! Welcome to WHL! You have found a wonderful place full of fabulous people. There are people here that are living with all kinds of autoimmune diseases (diagnosed and undiagnosed) and I am sure you will find many sympathetic ears.

    Although I have only been diagnosed with SCLE Lupus and Fibromyalgia I have CNS involvement that most doctors believe is autoimmune related. The problem is that the test results won't be kind on any given test day. They fluctuate so therefore I am still undiagnosed.

    What kind of issues are you having? I have everything from numbness and tingling, seizures and short term memory loss that has been confirmed by a neurophsych
    test. Tons of other stuff but it would take way too long to go down the list!

    Once again I am glad that you found us. Others will be by to introduce themselves to you and please make yourself at home here.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I know and understand the list. Thanks.

    I've been diagnosed with Narcolepsy and SLE with fatigue, joint and muscle issues, and "the fog". This year I've had 3 severe strokes that led to the diagnosis of CNS Vasculitis as well. Actually the 1st stroke led to the diagnosis, but the flares keep coming this year. Now I'm getting seizures, neuropathy, numbness, tingling, partial vision loss and speech issues, and a whole slew of new medications to add to my meal times. With everything now so new it's hard to know what is from the stroke damage and what might be a side effect of the meds, which is why none of my docs will give me anything for the nerve pain. They say that'll get better in time as I "learn how to deal with it." These symptoms are new to me and are kinda scary, not to mention the strain it's put on my emotions and family life since I've had to rely on others to do things I used to take for granted. Each hospital stay I come home with some new neurological issue.

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    Oh little red I completely understand the frustration. It is so hard to accept the new person we are becoming and to see ourselves as still valuable. We are though. It is so east to get overcome by the changes because they seem to happen so rapidly. The screaming out of words from no where. I actually thought that was bad until last week I had a night where my mouth didn't seem to work. My fingers worked. I could type/text (slowly) but the line between my mouth and my brain had a short in it. I think that would have scared me to deal a year ago and this time it was simply... OMG what now???

    I also understand that pain. I don't take anything for that either and some days you want to hurt someone. You feel like you are already on so many meds what would one more hurt? I am on an antidepressant and I had my second neurophsych test last week and the doctor said "are you depressed?" I said "yes". She asked why and I began to list off what had changed in my life just in the past year. She stopped me in the middle and said "No need to go further. I can see why".

    Luckily I found this place and these people saved what little was left of my brain (grins). When my days are bad I come here and vent and someone says just what I need to hear or I come here and read and someone says something that makes me feel less alone. It has become better (mentally) since I have been coming here. I have learned that my life isn't over it is just different and there are some wonder people that are different just like me.

    Welcome aboard
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    little.red (11-28-2010)

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    Quote Originally Posted by little.red View Post
    I know and understand the list. Thanks.

    I've been diagnosed with Narcolepsy and SLE with fatigue, joint and muscle issues, and "the fog". This year I've had 3 severe strokes that led to the diagnosis of CNS Vasculitis as well. Actually the 1st stroke led to the diagnosis, but the flares keep coming this year. Now I'm getting seizures, neuropathy, numbness, tingling, partial vision loss and speech issues, and a whole slew of new medications to add to my meal times. With everything now so new it's hard to know what is from the stroke damage and what might be a side effect of the meds, which is why none of my docs will give me anything for the nerve pain. They say that'll get better in time as I "learn how to deal with it." These symptoms are new to me and are kinda scary, not to mention the strain it's put on my emotions and family life since I've had to rely on others to do things I used to take for granted. Each hospital stay I come home with some new neurological issue.
    Hi Little Red, welcome to the WHL and it's lovely to come across someone who's gone through alot of the same symptoms as myself. I had to bad strokes at 24yrs old and was layed up in bed for 4yrs and they thought i would'nt walk again but i had a dad that pushed me, i've got two different lots of seizure's and the strokes left me with todds-paralasis, where i still go paralised at times, then lose of speach but it's all down to the nerves and what the strokes cause, i'm on Frisium besides Valium to help and control my nerves besides depression. I suffer with the fog and memory loss like yourself and it gets so flustrating it's unbelieveable. The partial vision loss is damage to the muscles of the eye as i'm in the same boat.
    I was born with Raynauds and i had slight affects as a child, then the fit's started slowly adding at 14yrs old and at 18yrs old the lot hit me out the blue, manic depression and the two lots of epilepsey fitting up to 18 fits a day then in coma's.
    I realy do know where you coming from and it's a terrible strain to cope with but we're a lovely large family to chat with and let anger out when it builds up.

    Terri xxx
    Last edited by Peridot_Gem; 11-29-2010 at 05:54 AM.

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