LindaH
New member
- Joined
- Jul 10, 2008
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- NC
- City
- Nashville
Hello everyone! Today is my first day joing the forum here and I do hope I get to meet some very special friends. I really need that right now due to an illness that so far has been undiagnosed. And I am getting pretty darn scared about right now due to the disorder getting worse instead of better!
I am a 48 year old mother of 3 children. 1 son and 2 daughters and 2 grand-daughters. I started getting sick in the late 80's era with my stomach getting upset alot and severe abdominal pain. Then the fatigue set in along with numbness and tingling. Started seeing a doctor back then that could only find Sensory Neuropathy and first thought me to have MS. I actually do mimic MS quite often and my symptoms are just like it. But it was ruled out. Then I developed photo-sensitivity to the sun and got a skin biopsy. They now think Lupus. So they started treating me for Lupus because of a positive Anti-double stranded DNA, ANA, C-3 and a few other test. So since 1992 I have been getting treated for Lupus.
The whole time with this Lupus stuff I have complained about numbness and tingling and weird attacks on my nervous system. Let's just say it makes me feel bad! Really bad! The neuropathy problem has progressed to a Chronic Sensory Motor Axonal Demylinating Polyneuropathy showing damage also to the muscles. Also starting to show borderline GFR meaning possible kidney damage and a high LDH showing tissue damage and I keep a High White Blood Count.
The last two Rheumatologist I have seen have told me my Lupus was not active and they really don't see Lupus as me having the disease. Now seeing a Neurologist again and hope he can spread some light as to what is making me so sick!
I have trouble sleeping unless I really knock myself out on Clonopin and Ibuprophen. I am really not on much medications. 5 mgs of prednisone because they tapered me down. Since taken off the other meds, I have gotten so sick! The medications I was taking did not really help that much either, but at least it kept me from suffering some and I did get some rest and sleep.
I am undecided what to do now since nobody really knows what my problems are. I am sick of seeing doctors in hopes they find out what is going on. I'm totally fed up! But again I am scared because I know whatever this is inside me is actually killing me. I know inside that I am dying of something and if left untreated I am going to die! Do I keep fighting and spending money over and over again for no answers in hopes I get an answer or should I just give up! 16 years of suffering. It started out mild but in the past year I have seen it get worse and very progressive. All my labs come back negative or either not enough evidence.
That nerve damage stuff drives me crazy. That vibrating numbness and tingling and I get it all over. If it was just an arm, I think I could handle it. But it's always both arms and both legs getting attacked. I begin to wonder if this is somthing genetic. My mother she started out in her younger days with simular problems. But when she reached 69 she was diagnosed with an unexplained neuropathy. My middle daughter is showing signs of the illness. I even have a nephew that is sick. There is 4 of us in the family right now with simular symptoms, but mine so far is the worst.
I left my doctors yesterday and got into a corner and cried. I'm so depressed right now and tired of feeling so bad all the time. All I want is just a little break! I want to join a forum because I really need that support behind me and because I don't know what it is that I have, I don't know where to go! Hmm! No forums for somebody like me! :?
So many of us have a name for our disease and I don't! Not knowing the unknown is pretty scary. If I'm dying, I would at least like to know that what I have is terminal. It would hurt finding out but I would at least want to try and fight what I have instead of giving up. Right now I'm ready to give up.
I guess you can tell it is taking a toll on my sanity. And all I want to do is live! Have a good time and enjoy my life. Instead I sit in my home and suffer. There are days where I can't even take care of myself and my husband works. So I am alone in fear that this disease I have is going to take me away and I suffer at the same time being alone.
MY children! Well, one is in Florida and the other one is married with 2 children and her husband only thinks about himself and his family. My youngest daughter teaches school and lives far away. So I really have no support to fall on when I get this bad off!
Ohh the pain! I hurt something aweful too.. Wants to make me crawl in a bed and never leave. I just hope somebody gives me a diagnoses soon so I can be treated for it! Even if there is no cure, I would at least like to have something to help me with this agony!
I hope you all except me in here as a friend and I hope that I found a place that I can feel I belong in!
So sorry this is so long! I really need some support and hugs right now! Yeah! I'm having myself a pity party today! Something I do alot when I feel bad!
Looking forward to being a part of your family
Hugs
Linda H
I am a 48 year old mother of 3 children. 1 son and 2 daughters and 2 grand-daughters. I started getting sick in the late 80's era with my stomach getting upset alot and severe abdominal pain. Then the fatigue set in along with numbness and tingling. Started seeing a doctor back then that could only find Sensory Neuropathy and first thought me to have MS. I actually do mimic MS quite often and my symptoms are just like it. But it was ruled out. Then I developed photo-sensitivity to the sun and got a skin biopsy. They now think Lupus. So they started treating me for Lupus because of a positive Anti-double stranded DNA, ANA, C-3 and a few other test. So since 1992 I have been getting treated for Lupus.
The whole time with this Lupus stuff I have complained about numbness and tingling and weird attacks on my nervous system. Let's just say it makes me feel bad! Really bad! The neuropathy problem has progressed to a Chronic Sensory Motor Axonal Demylinating Polyneuropathy showing damage also to the muscles. Also starting to show borderline GFR meaning possible kidney damage and a high LDH showing tissue damage and I keep a High White Blood Count.
The last two Rheumatologist I have seen have told me my Lupus was not active and they really don't see Lupus as me having the disease. Now seeing a Neurologist again and hope he can spread some light as to what is making me so sick!
I have trouble sleeping unless I really knock myself out on Clonopin and Ibuprophen. I am really not on much medications. 5 mgs of prednisone because they tapered me down. Since taken off the other meds, I have gotten so sick! The medications I was taking did not really help that much either, but at least it kept me from suffering some and I did get some rest and sleep.
I am undecided what to do now since nobody really knows what my problems are. I am sick of seeing doctors in hopes they find out what is going on. I'm totally fed up! But again I am scared because I know whatever this is inside me is actually killing me. I know inside that I am dying of something and if left untreated I am going to die! Do I keep fighting and spending money over and over again for no answers in hopes I get an answer or should I just give up! 16 years of suffering. It started out mild but in the past year I have seen it get worse and very progressive. All my labs come back negative or either not enough evidence.
That nerve damage stuff drives me crazy. That vibrating numbness and tingling and I get it all over. If it was just an arm, I think I could handle it. But it's always both arms and both legs getting attacked. I begin to wonder if this is somthing genetic. My mother she started out in her younger days with simular problems. But when she reached 69 she was diagnosed with an unexplained neuropathy. My middle daughter is showing signs of the illness. I even have a nephew that is sick. There is 4 of us in the family right now with simular symptoms, but mine so far is the worst.
I left my doctors yesterday and got into a corner and cried. I'm so depressed right now and tired of feeling so bad all the time. All I want is just a little break! I want to join a forum because I really need that support behind me and because I don't know what it is that I have, I don't know where to go! Hmm! No forums for somebody like me! :?
So many of us have a name for our disease and I don't! Not knowing the unknown is pretty scary. If I'm dying, I would at least like to know that what I have is terminal. It would hurt finding out but I would at least want to try and fight what I have instead of giving up. Right now I'm ready to give up.
I guess you can tell it is taking a toll on my sanity. And all I want to do is live! Have a good time and enjoy my life. Instead I sit in my home and suffer. There are days where I can't even take care of myself and my husband works. So I am alone in fear that this disease I have is going to take me away and I suffer at the same time being alone.
MY children! Well, one is in Florida and the other one is married with 2 children and her husband only thinks about himself and his family. My youngest daughter teaches school and lives far away. So I really have no support to fall on when I get this bad off!
Ohh the pain! I hurt something aweful too.. Wants to make me crawl in a bed and never leave. I just hope somebody gives me a diagnoses soon so I can be treated for it! Even if there is no cure, I would at least like to have something to help me with this agony!
I hope you all except me in here as a friend and I hope that I found a place that I can feel I belong in!
So sorry this is so long! I really need some support and hugs right now! Yeah! I'm having myself a pity party today! Something I do alot when I feel bad!
Looking forward to being a part of your family
Hugs
Linda H