What is going on with my family? Genentic disorder possible?

    • Anonymous
      February 4, 2009 at 7:23 am

      Hey family! Get one person straightened out to get another one in the hospital. First my mom but now she is eating 3 days now and I got her walking. Not doing alot of walking but we got some babysteps and I am glad to be seeing them.
      Last night my sister called and she took my nephew Jamie to see his neurologist because he was having problems with walking and complaining about his arms being numb. He just got recently diagnosed with Celiac Disease and I too have the Celiac along with everything else. Sick of getting diagnosed with more and more stuff!
      Strange for my mom has an unexplained neuropathy, then they attributed my CIDP as being related to Lupus. Now my nephew has something going on and so does my daughter!
      My nephew has been getting sick at a younger age than the females have. He is only 18 years old and been sick 2 years now. This weekend he started complaining about both of his feet going numb. Then it got to his calves of his legs. Then both arms started going numb. So my sister called his neurologist that treats him for migraines and got him in yesterday. She said he could barely walk. Then both arms were going numb. The neurologist saw him and they did an MRI of the spine because he has ankolosing splondytis but that came out normal. Neuro then did a partial EMG and then had him admitted into Wake Medical Center in Raleigh!
      And we don’t know what is going on at the present time. She is up there and I am down here and can’t leave the house because I have my mom in a hospital bed.
      Now I am wondering if maybe we have a genetic disorder and was I misdiagnosed and they just played a guessing game with me because I had Lupus and the Thyroid issue. I don’t know! Maybe because he is much sicker than I at a younger age that it will finally give my family closure and we find out what is causing us all to be having nerve damage. A bad nerve damage at that. One that attacks sensory and motor nerves. Might be more dominant in the males than females and causes the males more problems. His started at 16. Mine started at 27 and my mom was about my age when her’s started. Between me and my nephew we both have been alot sicker than my mother. Possibly meaning she is a carrier of the gene maybe? I don’t know! I just don’t know!
      I just hope and pray they can figure out what the heck is going on and hope this is something that is treatable. Myself! Have seen prednisone and methotrexate, Rituxan made it worse! May see IVIG’s but they have not started that yet. And then maybe what I have along with my nephew is not treatable. Maybe we have something that is just no cure! I thought they had me figured out and now I am beginning to wonder if maybe they don’t have me figured out.
      I just pray they find something on my nephew and it’s something treatable. If not then I have a family that is walking around here with a nerve damage problem and no answers as to why. We shall see! Say a prayer for my nephew! He is so young! Too young and now has to deal with something like this! I’m just so upset right now! What is happening to my family?

    • Anonymous
      February 4, 2009 at 9:17 am


      Autoimmune disorders are genetically traceable. There is no rhyme or reason to any particular one, but the odds are there.

      It is like autoimmune problems travel within the family. Lupus, R. Arthritis, Graves disease, Chron’s, CIDP, GBS, ALS, and hundreds more. In an autoinnume disease, the immune system attacks “self” and causes damage. Somewhere in the Genetic code there is something that allows these abberant immune cells to stay around and do their thing. The problem is that you don’t know which one you will get.

      If you research yourimmune system you will run across the “hot dog and a bun theory” A disease is the hot dog, and the immune cell is the bun. Or something like a lock and key. The immune cell wraps around part of the virus, or bad bug or whatever. It recognizes it as “bad” and “foriegn” and destroys it. Then it assumes there are more and goes looking.

      In our case, these abberant T-cells go looking for myelin, which surrounds the axons. They eat it up, because it is bad, and we have a dysfunctional axon.

      In other autoimmune diseases, aberrant T-cells attack a different part of the body, causing damage. The problem, genetically, is that you don’t know which one you will get. It is like the probability of SOME KIND of autoimmune disease goes up, but you don’t know WHICH ONE you will get, if any.

      From that point, support and treatment.

      In my family, My brother died of multiple myeloma, autoimmune, my father has the autoimmune Diabetes, my sister has Graves, Uncle died of multiple myeloma, Aunt has RA and diabetes, sister-in-law has MS, so their kids are doubly prone. and so on.

      What can you do? Beyond being there, you can’t stop a person from acquiring any one or another of these diseases. Do good health practices and keep overall good health and a positive attitude. You know, all those good things.

      I totally understand your dilemma, I live it with you. People in my family have died of autoimmune problems, and are severely damaged also. We can only do our best, give love, and support. I feel your pain, and I wish I could take it away.

      Best wishes,

      Dick S

    • Anonymous
      February 4, 2009 at 10:40 am

      Thank-you Dick S for posting back to me. You are right! It certainly would explain a few things here with my family. I am so exhausted! Been two rough weeks. My biggest fear right now is me staying well and not getting any sicker than I already am. Caring for a sick parent is not easy. But I am trying so hard. I could fall asleep right now and sleep a whole day.
      Talked again with my sister. They got my nephew out of bed this morning and he is now having to use a walker. Whatever it is seems to be very progressive. They plan on running a series of test on him today to try and get to the bottom of what is going on with him. Gosh! I feel so bad for him. Only 18 years old! I just hope and pray his neurologist figures this out. For I do not want to see anymore family getting problems with this rotten filthy nerve damage.
      They have the physical therapist and nurses coming out Friday and next week. Then maybe I can get a small break some. My back is killing me, my feet are killing me and I ache from head to toe. If they get an answer for my nephew we might just finally find out what is happening. Maybe it’s just a coincedence that I have my problems and he might have something totally different. Like you were saying we are prone to have something auto immune and each one of us get something different. But might carry a certain gene that causes it.
      I’m just so frustrated though seeing this around me and watching my family getting sick and then saying to myself what is happening here? I could understand 1 or 2 of us. But 4 of us with nerve damage and having these strange symptoms that almost mimic each other. That is strange! Maybe this is Charcot Marie Tooth. A certain form of it! Possible! That crossed my mind before. Whatever it is …it has kicked me in a tail alot! Comes and goes and each time it does it throws a powerful punch!
      Well I better go! Need to get my mom finished with her breakfast. She is actually eating very well. Right proud of her! Just got to get her walking again! She’s doing some but 2 weeks behind all the others that had this surgery.
      Physical therapist told us yesterday he is looking at 6 weeks of therapy and might have to have more. I hope my mom is up and walking good in 3 weeks. We shall see! They way things have been going! I can’t wait to see the spring weather get here. Hopefully by then I will start seeing my family back to some normal behavoir. No more hospitals, no more doctors and no more therapy! I’m sick of seeing those doctors it’s no joke.
      Weird thing is I am actually feeling better and stuck at home with my mother with a bad case of cabin fever! I want so bad to get in my car and go shopping and go out for breakfast. Just some nice fresh air away from my house. But that may be a while. LOL!
      At least when the spring weather comes I can go outside and plant a flower or something. Right now it’s TV, Computer, Stove, Laundry, and taking care of my mom. Here I am finally feeling good enough to want to get out and have some fun and now stuck staring at walls in this house caring for my mother. I don’t mind caring for her but it takes away alot of freedom. Have a good day Dick S! Will keep you posted about my nephew! Just hope this is something they can treat him with and not be something really bad! Hugs
      Linda H

    • Anonymous
      February 5, 2009 at 7:24 pm

      I hear both of you,

      Linda, Hope they figure your Nephew out real soon. Its aweful. Sorry to hear about your family too Dick.
      My Daughter Kelly has been going through the Mill. Bad Abdominal pain for months and months. Finally got word, and we figured it may be this. The doctor told us it is Crohn’s disease. Great, another autoimmune issue. She recently had that dumb Guardasil series. I been watching her since she got those shots, and she had been sleeping more. I thought it was because she is a teenager but not that much. I bet that kicked it up. Now she has to do steroids. NO MORE VACCINES!! for me or us. Somthing is Wrong Here!

    • February 7, 2009 at 12:06 pm

      I’m sorry that not only are y’all going through this, but that there does seem to be a genetic tie. So far, I know of no others in my family with autoimmune issues. (And I pray I don’t pass this stuff on to my kids. What a horror!)

      Linda, I pray that you will get some rest and that you are not diagnosed with any additional stuff…