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LindaH

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:cry: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
 

Al

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Hi Linda. This is a pretty good place. We have quite a few undiagnosed here. I'm sure you'll find some answers and friends. We're not doctors but some of us are living with some weird stuff. Hope we can help.
AL.
 

LindaH

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Thank you Al

Hello Al! Thank-you for welcoming me in the forum. I look forward to meeting everyone in here and do hope I can be of some assistance when I can. Got a body this morning all numb and tingly. Enough to drive me nuts. I'm hoping a muscle biopsy gives me and my family some answers. Not fun being sick! Thank-you for the warm welcome
 

Al

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Hi Linda. I moved your thread here so that you might get more answers.
AL.
 

KANSASTOM

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Hi Linda, I am new to this board too. I have been researching alot about neuropahties and Lower motor neuron diseases. What I have found is that ALS usually presents itself with no sensory abnormalities and pain and your duration of symptoms is pretty long for ALS. Has anyone ever mention Charcot Marie Tooth disease to you? You might want to check into that one.
 

wright

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Hello Linda, welcome to our home

It sounds autoimmune to me, which is probably why they thought it was Lupus (Lupus is caused by autoimmunity).

What kind of treatment have you been getting? If you haven't already, you might want to inquire about plasmapheresis. Your plasma is where the autoantibodies are going to be circulating and exchanging your plasma might certainly help you.

There are also some new "autoimmune drugs" out there and protocols to tackle autoimmune syndromes that hold promise. One in particular combats Crohn's disease (thought to be an autodimmune disease) and might very well work for other autoimmune disorders. I can't recall what it is but a rheumatologist would certainly know.

I know it must be hard and frustrating not having answers and not having an ailment with a name. Unfortunately, some autoimmune disorders don't have names but they can certainly be treated.

Hang in there and lean on us whenever you feel the need.
 

cukita99

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hi linda, was diagnosed with als two years ago after being sick for three without a diagnosis. so just hang in there. i know its hard but knowing what you have is hard to..
 

Sammantha

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Well Linda you have found the right place, because most of us are sick of being sick, tired of seeing doctors that cant or dont help, and tired of dealing with all of it alone! My mother was sick with allergies her whole life, she went to a doctor about five years ago because of pain in her abdomen. The doctor told her she looked good to him, wink wink and that was that. My mom hated going to doctors. Well she just had a ct and endoscopy done that revealed hiatal hernia that lead into severe acid reflux which caused esophagitis, gastritis and scar tissue in her esophagus! She went to the doctor complaining about her stomache which had turned hard like a rock and she looked pregnant.... The doctor thought she looked good for a fifty year old woman so did not rush on any of her tests! She had a liver panel and it was off. She then was asked if she drank a lot because her liver was fatty.. She does not drink. After all this they finally gave her a ANA test. It was positive, then it was positive for speckled. She has bone spurs, lumps, hives, conjuctivitis, liver and gastro damage... Turns out she was positive for lupus! All these years! Now i am having health issues and because i dont look the part the docs keep me on a watch whether or not the tests agree with a diagnosis. Its driving me insane...... I had an ANA test done a long time ago and it was negative... I cant believe all the stuff my mom endured when a simple test would have proved it, i wish she would go back to the doctor who told her she was fine when she had the hernia because that is what caused all the scar tissue, thank god it was not cancerous. It is amazing what are bodies can take, i personally feel like i cant take much more, but i know i dont have a choice. I have allergies and get sick quite often, i need my gallbladder out but i have no insurance. I endure intense attacks that last two to three days at least twice a month. You would think i would get smart and not eat fatty foods but it is expensive to eat healthy. If i started with my muscle, fatigue situation we would be here all day! I am losing use of my left hand now, but i have been lucky because i have had symptoms in it for over two years. I see my neuro on the 25th... and i really feel like letting him have it because i hold back on so much. He is a great guy but i am so tired, angry, and p-------d off by this disease or whatever it is, that i feel like i will explode. Well on that note, i hope you have a great night! We are here for ya.
 

brendapals

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Welcome Linda,
I am also new to this site. I was diagnosed with ALS on 6/3/08. Not sure when the symptoms started, I was treated for depression, lupus, mixed connective tissue disorder. Actually I feel incredibly good-I am still working and chasing 3 kids around to all the baseball fields. I do feel like tonight that I may have overdone things when I worked all day, met my hubby at the bank after work, then went to the grocery for about an hour. I'm too pooped to pop, as my mom used to say!
This is a great site and you will learn so much!
Have a blessed weekend,
talk soon,
brenda
 

fiddleplayer51

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Hello Linda,
Welcome to the forum. As you read through some of these threads and posts, you'll soon discover that there are quite a few folks here who are awaiting a diagnosis. I must say, however, your 16 years is a helluva long time! I know you must feel so discouraged. Surely there is some diagnostician who can solve the puzzle, although I hear what you say about being sick of doctors.
I hope you find some relief by interacting here on the forum.
I wish you strength and a ray of hope.
Best to you,
Jane
 

anneinma

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Hi Linda,

I am fairly new here myself. you have found a very supportive place. This is a long shot but have you been tested for Lyme disease? A friend of mine was very sick for over a year (nearly died) before they finally diagnosed her and got her on intensive anti biotics. Here is a link.
.http://www.lyme.org/otherdis/ld_symptoms.html
 

ladyk

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Hi Linda

I'm new here too. I so understand what you are going through. I too have been sick a long time, terribly so for a year with no diagnosed and no good answers. I too have felt like crawling into bed and never getting out. I realized that I didn't need a diagnosed to just TRY to stop stressing. I just try to live to my fullest everyday-I can stay at home in pain and be miserable or I can pull my painful, numb, twitchy self out of bed and go on LIVING. I hope and pray that you will find some relief and peace. This is such a good place to find comfort and support during the dredful journey. K
 

awieleba

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Hi linda

I can relate. I have been sick on and off (more off) untill recently. I wanted to crawl in bed too. I cant because I have 6yr old, 4, and 8 months. NO real rest is coming way anytime soon!

They thought MS for awhile for me too, I had lesions on white matter of brain. I have things that fit that, like coming and going. I had this thigh muscle weakness 3 years ago but went away. along with tingling and too much to list. This time the thigh weakness wont leave and is getting worst, I just plop it along. and now I have these twitches with muscle jerks(myoclonus) and brisk reflexes. I have had this all for about 6 months---the twtching for just over 3.

well, they thougt lupus for me. I had a mild elevated ana/speckled smooth pattern. it was only 1/168, i had low white blood cells and high CD3 t cells (no hiv). but all other tests ruled out lupus. My neuro thinks mixed connective tissue, I told her that when I was so sick that I saw the chief on rheumotolgy (he is my dads doc. who diagnosed him with scaroidosis), he said NO lupus or fibro etc. She said that some overlapping disease may not present for years. OK, I understand that no one wants to jump the gun on als but come on. I have seen 2 rheumies! you test for it or dont.

I dont know where this will take me or you. I thank you for sharing. I dont want to be gleb, but if I can get anther 16 years untill a further progression of my symptoms I will be thankful. I am not sure where you stand or feel, but we have not had it as bad as many on this site. we need to be thankful for the sick years that did not put us under like so many, do you know what I mean? I am not trying to underscore your feelings, I am just trying to be positive. We are still moving and taking care of business today. all we have is today. I dont care how much pain I am in...my new motto is if I can move, I dont care about the pain. when my leg stiffen's I have to keep going. I take motrin and think about my kids. When I cant move my leg......well I will address that at that point.

I am with you and I wish you all the best. keep me posted, I can relate to you.

april

I
 

Sammantha

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When i read others posts it makes me realize how lucky i am..... aweilba, it must be really hard haveing three children especially a baby.... My friend has a nine month old and girl and i love to watch and play with her. It is so weird now because i can only pick her up somewhat and hold her for a few minutes. I could not imagine being able to only do that when my kids were little, i thank god that i had all the strength in the world back then, when i needed it most. I am very lucky that i have two smart and loving boys that like to be independent. I spend a lot of my time teaching them how to take care of themselves. I am teaching them how to bake right now. We make deserts then they make it with no help. I should start teaching them how to make healthy meals, otherwise they will only know how to make junk food when i can no longer cook for them! Hopefully they will be in college before that happens. I try to teach them the right way to clean but i still have to go over what they have done, i am just picky.... That reminds me i should teach them how to use the washer and dryer! Oh my gosh i sound so lazy, but i am not really! I love my family and thank god for them! and i thank god for this forum and the people on it.
 

awieleba

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Hey Samantha-
you keep teaching them boys and they will make their wifes happy! I married the baby of the family who had a mom and 2 sisters that did it all for him. my mom did it all for me and when we got married and looked around at our house, it was like "ok, what do we do and who is going to do it?"

I am in the very current process of trying to make my boys more independent. I mean like I just started last week. NO matter what happens with me, it will always suit them to know these things. They dont even dress themselves.

you are not lazy, me and my hubby joke all the time that we cant wait for the boys to be older to start doing yard work and garbage and do more around the house. Just note we did not have chores and it is a challenge for us to keep it all up. (that is why we have a cleaner!)

take care

apri;
 
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