• Anonymous
      August 27, 2008 at 9:32 pm

      I am in Ohio. Bill (husband) is getting his second opinion. Hope everyone who has talked to me thru this knows or remembers what a struggle Bill has had and me too. Our second opinion was yesterday and tomorrow. The doc there is not so sure he has cidp as the doc in Tennessee diagnosed. Guess that is both good and maybe bad. He had him take 19 ex of all of his bones. Any guesses. Of course he will not say just yet until he gets into from the bioposy that I had our neuro send. I do know that he spent alot of times with us . I was well prepared with list of tests I would just pull out that I had paperclipped of the most important items. Our neuro in Ten said I wouldn’t need the emg. Wrong again. I took two. One from our first doc. Anyway I am hoping something good comes out of this. Please say a prayer for us.

      He also had blood tests. and 24 hour urine test.

    • August 27, 2008 at 10:03 pm

      If they do a repeat ncv/emg, I am sure they will duplicate the original test by usung the same nerves and measurements, but play dumb and say something like so do you guys test the same nerves to have an accurate comparrison? Is it possible that we could test the same nerve. This way you are not insulting them by demanding and doubting them and you are still letting them know you might know a little yourself. I don’t know what they could be looking for w/standard bone exrays. I assumew/mri, they would be looking for lessions. I forgot, did you have a nerve biopsy in Tenn? Did it show onion bulbing
      ( demylienation process)? What about the athena test for charcot marie tooth? In any event, I am sure you are in good hands and you will leave with an answer and a plan. I am going to have faith in it!!!
      Dawn Kevies mom

    • Anonymous
      August 27, 2008 at 10:08 pm

      Prayers coming your way! Let’s hope the results are good!

    • Anonymous
      August 27, 2008 at 10:23 pm

      The x-rays and 24 hour urine collection are probably to look for and make sure that your husband does not have multiple myeloma. This affects bones and they take a lot of x-rays (skeletal survey) to look for lytic (low density lesions). With myeloma, the abnormal cells often make an immunoglobulin or part of one. It is important to make sure that neuropathy is not associated with multiple myeloma because the treatment would be different. I had a skeletal survey and had the 24 hour urine test to make sure that my neuropathy was not due to this. They also do a blood test, I think it is called a SPEP–the S is serum, and end EP is electrophoresis but I cannot remember what the middle P stands for…..
      Are you by any chance seeing Dr Levin? He is the person I saw at Cleveland Clinic for a second opinion and he was really thorough. He did not talk to me much, though, afterward, so have your questions ready to ask him…
      I hope all goes well and you get answers.
      WithHope for a cure of these diseases.

    • Anonymous
      August 28, 2008 at 12:51 am

      Yes, it is Dr. Levin. He spent over 2 hours with us. He seemed to know what he wanted to test for. He felt very sure that he did not have cidp mainly he said that the emg did not prove it and because it was mostly axon he is thinking that it is something that is going directly to the the axnol(sp?) . He mentioned the bone marrow and if there is no mylin sheth left how can you know for sure it is cidp.

      To Dawn: Dr. Thomas I believe did mention a onion bulb but said there was none. I do not know what onion bulb is about. Dr. Levin at Cleveland Clinic is having his pathologist check the biopsy slide. Dr. Thomas said trust me you will not need the emg results or the biopsy but I insisted.

      Hope: What is multiple myloma

    • Anonymous
      August 28, 2008 at 1:27 am

      [QUOTE=Dawn Kevies mom]Joan,
      If they do a repeat ncv/emg, I am sure they will duplicate the original test by usung the same nerves and measurements, but play dumb and say something like so do you guys test the same nerves to have an accurate comparrison? Is it possible that we could test the same nerve. This way you are not insulting them by demanding and doubting them and you are still letting them know you might know a little yourself. I don’t know what they could be looking for w/standard bone exrays. I assumew/mri, they would be looking for lessions. I forgot, did you have a nerve biopsy in Tenn? Did it show onion bulbing
      ( demylienation process)? What about the athena test for charcot marie tooth? In any event, I am sure you are in good hands and you will leave with an answer and a plan. I am going to have faith in it!!!
      Dawn Kevies mom[/QUOTE]

      Dawn: He said it is not demylienation. Thanks for the info as I was scrambling trying to find something.We will be leaving Friday for our sons and then go back to tn. on sat.

    • Anonymous
      August 28, 2008 at 6:49 am

      Hi Joan! Bless your heart dear! You sure are going through alot right now and Bill too! I will be keeping you in my prayers and sure hope they find out what is going on and have some treatment plans for him. Will say some huge prayers today. Good luck today and I wish you both a really good day today!

    • Anonymous
      August 28, 2008 at 9:51 am

      I also will be praying for you & Bill today. Hope all goes well & a diag. can be made so treatment plan can be started.

    • August 28, 2008 at 1:43 pm

      Onion bulbing is how the nerves look if there are multiple demylinations, or relapses and then remmissions. Each layer representing a new relapse, like the layers of an onion. If there was not any onion bulbing that would make them wonder if it were cidp. All the pieces of the puzzle get put together, each test result. It sounds like they are taking good care of you guys and WILL have an answer for you. Continued prayers and good wishes!
      Dawn Kevies mom

    • Anonymous
      August 28, 2008 at 5:22 pm

      Thanks for your concerns and wishes and prayers. We are back from Cleveland Clinic but are very down. No diagnosis yet and not too sure we will have one. Dr. Levin said the biobsy is not completely looked at yet,the urine test not done, blood tests not completely done but xrays are ok.

      I am a little confused as outside the earlier I peaked out as he was checking on us if we were done with the emg. At that point he said the blood tests were all ok but waiting for the xrays. Unless I am crazy it is the oposite of what we heard later. Anyway he suggested no more plasma phersis but to do another ct scan of chest (our family dr did this early on) and go back on prednisone alone. Bill was so disappointed as he was so unhappy with that and then the fact that he ended up with sepsis yikes. He said he was on for 6 weeks and would like to see him try it again without the imuran for at least 3 months.

      As far as repeating blood tests (not until spring with him) his blood has been clensed and washed with the pp so he needs to repeat.

      The rest of the results will be in about 2 weeks. I know that is not long but we were hoping for anything to give us today. Just something positive. He says it is not cidp and is not demyilating . I asked if it was progressive and he said yes. I am suggesting to Bill after the two weeks to send everything to Mayo as we do not have to go there, you can send everything you have to them for review and not come yourself until they say they can help you.
      Do not know if we can get the biopsy back again. They send it back to Thomas (tennessee neuro) and he has to send it back to someplace.

      WithHome: what came of your visit to Dr. Levin. I am guessing you do not have multiple myaloma (sp?) What did he do for you and what is your dx from him. Tell me more please.

      Sorry so long. I will be home Sat or Sun but will still use this computer at friends home until I leave for Columbus (our sons) sometime tomorrow. I can use his also.

      Thanks for info and sorry so long. Just very unhappy right now.
      Joanf:confused: :confused:

    • Anonymous
      August 28, 2008 at 5:41 pm

      WithHope: Sorry Hope I meant to put WithHope on my last message at the end but ended up putting WithHome. Hope you saw that and knew it was for you. I am just not too accurate today.


    • Anonymous
      August 28, 2008 at 7:53 pm

      Oh dear Joan! I am so sorry to hear this for you and Bill! I sure hope something comes up soon and you get answers. Just wondering if he has a Neuromuscular Disease of some kind? Maybe CMT or something genetic. Some gene disorders can do strange things. And some don’t start until later years in life. You both have my prayers and I hope a miracle happens for Bill and you soon! Hugs

    • Anonymous
      August 28, 2008 at 10:04 pm

      I do not know if you already knew, he was diagnosed with cidp back in January but has actually had it for 2 1/2 years now but had trouble finding a doc who knew something. So yes it is I guess neuropathy but Clev doc says it is not demlnating ,I spelled it wrong. He went from steroids and imuran , then sepsis, then ivig, then plasma phersis. I just have to wait and see what the rest of the tests say. They are checking the biopsy slide that was done in Jan . I am afraid of some kind of malignancy. Hope not.

    • Anonymous
      August 28, 2008 at 11:30 pm

      Hi Joan! Bless your heart! I wished I could be there for you right now and just give you a big hug! You have been so wonderful being a caretaker for Bill. I have the CIDP of unknown etology too and am praying they figure me out soon.
      Seeing me getting sicker too and am worried myself. It’s not easy for both parties either. Husband or wife! I will say a huge prayer for you tonight and hope that one answer that you and Bill wish to see becomes a reality. But no malignancy! That I won’t pray for! I will pray for Bill to get well again! That is my prayers for you both.
      I just feel so bad for you right now! You both have been through so much! Keep us posted! Hugs

    • August 28, 2008 at 11:45 pm

      Whatever it is or is not, keep coming here!!! Be strong and don’t give up. If I would have given up with the first 2 mis dx, where would we be now. Keep faith and hope, because there are both in this world!
      Dawn Kevies mom

    • Anonymous
      August 29, 2008 at 12:44 am

      One thing that is really important to remember in medical fields is that complicated things sometimes take time to think about. Since I also saw Dr. Levin, I know that he is thorough and takes time to think about the whole picture and all the tests–so you do not have a definitive answer yet from Cleveland–he will keep thinking as the lab results and the review of the pathology biopsy are done.

      One thing I have learned from this forum is that you sometimes have to be seen by several doctors before a diagnosis clicks–I think it is the nature of these diseases–that the symptoms and course for each person is so variable, so different from others and that they are rare–so there are not a great number of doctors that have seen lots of them.

      I also know from personal experience that the doctor you saw tends to have a high threshold for the definition of demyelinating–much higher than my local doctor. I do not know who is “right”, just that they differ in this and in reading this is a controversial area with neuromuscular diseases.

      You asked about what multiple myeloma is–it is a cancer of the bone marrow cells and can be associated with lesions in the bones. I did not say cancer before because lots of people think of cancer as something that causes problems and demise rapidly. This is not the case for all kinds and there are over 100 kinds of cancer. I have known many people with multiple myeloma that lived for a lot of years with little symptoms although this is not the typical. It is, in the oncology world, considered a “better” cancer to have, if you have to have one. It is a disease for which new treatments keep being found so people are living longer and better now.

      The CT of the chest may be looking for cancer, but another possibility is sarcoid. A blood test is often done for this as well (ACE). One of the ladies that come to the neuropathy support group I attend have neuropathy from sarcoidosis. The best treatment for this is steroids.

      All of these are important things to think about with an “atypical” neuropathy and, in the long run, it will be helpful to make sure that they are all okay even if a definitive answer is not found. So I just want to say don’t be too discouraged now. I will keep you both in my prayers.

      If you do not get an answer, I would seriously think about going to Johns Hopkins for another opinion. I have heard lots of good things about neurology there with regard to these diseases and with regard to treating people like people. Mayo may be more famous, but several people have spoken about that they are not as caring (that you are more a number or a disease to them). Of course, Mayo refused to see me (saying that they had no studies that could not be done locally and no open trials for GBS/CIDP) despite the fact that my doctor trained there, so that did not endear them to me.
      WithHope for a cure of these diseases

    • Anonymous
      August 29, 2008 at 2:41 am

      Joan, I know how you guys are feeling, I went to cleveland clinic for a second opinion and got nothing, except results from a urine test that I never gave a sample for and a bunch of bruises from the emg test. I was very displeased with them.
      The urine test can also be for polypura(?) I think it has something to do with thrombrosus but not sure.
      If you are ever in the northern part of Ohio or in Michigan, check out the neuros at the University of Michigan, they are very good and more thorough than cleveland. The Dr I saw in cleveland was the head of the neuro dept, he was fired shortly after I saw him. The neuro I now see is Great and very professional and has a wonderful bedside manner. I hope Bill gets answers soon. You Both are in My Thoughts and Prayers.

    • Anonymous
      August 29, 2008 at 11:57 am

      I cannot thank all of you enough. Just for my own info what is the name of the neuro in Michigan. I will look at all our options and see what happens in the next 2 weeks and then go from there. Just trying hard to not show emotions to Bill right now
      It is so hard as all of you know with your own problems I will tell you more some other time as not everything here is everything but hate to bring up more that you need to hear only what is necessary for us.
      Caring and understanding more everyday

    • Anonymous
      August 29, 2008 at 12:21 pm

      Joan, keeping you both in my prayers. I can appreciate that this is tough on you both. Will be thinking of you. Hang in there and keep us posted.

    • Anonymous
      August 29, 2008 at 6:41 pm

      Joan! If you ever need to talk just let me know and I will be there for you! I really hate to hear such bad news for you and Bill! I will say alot of prayers for your family right now and hope some miracle happens for you both. Cyber hugs heading your way!

    • Anonymous
      September 12, 2008 at 5:38 am

      Hi there Joan, I dont post often but have been following Bills journey since you first posted. Like everyone else has said you are doing a fantastic job. Sometimes the journey is definately harrowing to say the least, and we wonder what else can we be left to cope with. Amazingly enough to get me thru my darkest days i always believe we are only given situations we are capable of dealing with. even though you think things cant get worse keep up your faith that you are strong enough to deal with htis etc and you will get thru.
      All the best, will continue to follow your posts
      Kia kaha (stay strong)

    • Anonymous
      September 12, 2008 at 6:43 am

      Hi Joan! Have not seen you posting these past few days and just wanted to check on you and see if you were okay! I am saying many prayers for you and Bill and hope they get answered for you! Keeping you in my thoughts~
      Big huge cyber hugs coming your way!

    • Anonymous
      September 12, 2008 at 11:53 am

      Thanks everyone for your encouragement. Faith: not sure I have any anymore.
      Sorry for the downer. I feel like there are so many of you who need encouragement from me to you and I am ignoring the fact that all of you have so many problems and most of them worse than ours.

      I have been playing tough love lately and I know this gets my daughter down but it sometimes is the only way to get my husband moving. I had some real frustations at Clev Clinic. Physical therapy was brought up and I quickly said that Bill has had 2 seperate prescriptions for pt but has refused to go. Just does not feel like it same thing about another subject for which I cannot disclose now.
      She got really mad at me and I know it was because I was complaining about her dad. Well, shouldn’t my kids know what is going on so they can encourage him and support both of us. This happens alot with her. It does hurt as she just does not get it. Then some friends (2) went along on the last session seeing the doc (only for 5 min. he said) when both of their phones went off one after the other. It happened at least 3 times and I asked them to leave which they did not (only because they did not turn it off just opened and closed it to have them ring again) Now we were already we were only suppose to see him at 1:55 for 5 minutes but he was early (20 till 1:00) but Bill was late as he stayed behind to smoke. Frustrated, of course expecially with some people saying let him go as he says smoking is the only thing he has to keep him going. I am sorry but when I hear the docs ask him to quick because it is not helping him it just causes more anguish inme.

      Believe me when I say that I DO UNDERSTAND what it is like to quit smoking. I smoked but of course I did not have a disease to confuse the issue. But it was one of the hardest things to do. He says he has nothing else. Where am I in this.

      So let this be a guidline for all of you out there. I want my husband to live and he is not good but better than alot of you that write in here. Please quit smoking before it quits you. My bigges fear is that this is what is going to get him.

      By the way some friend? of mine said get off this computer because it is not good for you. How in the world do they think I learned so much and had so much support if it was not for you folks. Sure I am angry especially since I told Bill when he wanted to move that he is going to move me away from family and friends and then die on me . He promised to quit smoking if I moved so here I am. You are my friends.

      Sorry, I guess I had to get a little mad

    • Anonymous
      September 12, 2008 at 12:01 pm

      I am sorry but I forgot to say it did do some good as he now went to pt. and of course he said it was because he did not have the time before while we had company for 6 or 7 weeks. That was a month ago. what ever he wants to say to my kids we both know my harshness might have done some good

      Also for the first time in a long time he got on the computer again. Was looking up some diseases and also info about John Hopkins and said he would go there if last doc does not come up with some good answers. Well I already he does not take Dr. Levins answers well as he suggested prednisone and ivig and plasma p
      are too expensive.NOT Looking outside the box again. Any suggestions on names of Docs for either JH or mayo
      Bye friends

    • Anonymous
      September 12, 2008 at 6:36 pm

      Hey Joan! I’m proud of you right now! Very proud for standing your grounds. You are trying to save your husband’s life and he made you promise’s and you expect to see those promise’s made! Keep up the good work my friend!
      You stay strong and you’ll get somewhere!
      He needs that physical therapy. That is what is going to help him gain muscle strength in the muscles that are not damaged and help to get him stronger in the muscles that are no longer working.
      I know you are angry but you have many reasons to be. You belong on this site. You really do belong here. You need our help just as much as we need yours. Who know’s? Somebody just like you might get in here in the same situation and you might be able to give them good advice that helps them. So yes! You are a member here and your husband needs to get help in dealing with this.
      Stay on him and don’t let him give up. That smoking! I said the same things many years back. And I now have mild asthma with mild copd. And now I have thyroid cancer and having surgery soon. I did quit smoking, but I tell you what helped. Those patches! They work great! And they also have a new medication out that helps stop smoking. The doctors can give him an RX for it. Not cheap but it is well worth the investment!
      Now! He has no excuse to stay smoking because you have two things you can purchase for him and that will help him quit.
      Let him know also that nicotine causes more harm on the central nervous system than any other drug. Buy him some candy to chew on. Give him a pencil to put in his mouth. I tried that with the patches. Boy did that wood pencil get chewed on! LOL! But it kept my hand busy. I felt like I had the smoke in my hand. Believe me! Tell him I said it will make him feel so much better when he quits. I started smoking at the age of 12 and smoked for 28 years. So if I can be a long term smoker a day and smoked like a phene and quit he too can do it!
      Ever heard of nicotine poisoning? Look that up online and it will give you alot of info about what it can do to your nerves and bloodstream. He needs that extra oxygen to help make the nerves come back to life. There is also a free website site called A support group that helps a person quit and there are many in there using that site. He can even chat with people in there trying to quit just like him.
      Joan! So proud of you! Don’t give up! You be the fighter and I think things will get better! Hugs my friend! Hugs
      Linda H

    • September 12, 2008 at 6:57 pm

      Hi Joan!

      Keep up the tough love!!!! About docs at Hopkins, Julie I believe sees someone there she likes. Try to pm her. Any oposition just going to Mayo? Make a nice Minnesota Fall trip out of it. I bet the leaves will be turning soon. Of course, there is the mall of America for you too!!! Best wishes!
      Dawn Kevies mom

    • Anonymous
      September 12, 2008 at 7:09 pm

      Thanks Dawn and Linda H . Glad someone agrees with me as it is so tough.
      I will pm Julie to see what she says.
      Maybe I am getting somewhere but it has taken soooooo long. I even called Clev Clinic today as it is past the 2 weeks they said they would let me know.
      I asked the Nurse to find out . Told Bill to do it but he did not. So I am doing it. He is also suppose to get a sugar test and ct o chest but I guess I will have to do that also. Oh Linda I got the patches for him a couple of months ago and he asked the cardiologist for a prescription which is still laying on his pile of to do list.


    • Anonymous
      September 12, 2008 at 7:25 pm

      I know this sounds mean! But when I quit smoking my husband still smoked. It stunk so bad. One day he woke up and all the ashtrays were gone. I threw them in the trash can and told him he could not smoke in the house anymore. LOL! So his first two weeks was going outside. And I picked it when it was cold outside. Nobody likes putting on a coat just to step outside and smoke. So I put my foot down there. A week later after the house was aired out, I took a few things out of his closet and let him sniff what his clothes smelled like. He was like yuk!
      Told him he wanted me to quit and I could not stand the stench smell anymore. Then a two weeks later, I tossed his pack of smokes in the trash after soaking them in water. So they were not smokable. Ohh it made him mad, but after a week of fighting and the less ciggies he was getting.. he finally gave in an gave it a shot of trying.
      I can be a $^$^^ to live with sometimes! He stayed on my case about smoking. And I quit! So then it was his turn. He was a stubborn old bull but I made sure I would not make it easy for him. Now we are both smoke free. All that ciggie is… a pacifier! After I quit, that is what I felt it to be. Hope this helps! Maybe it’s worth trying. Start out by no more smoking in the house! Toss the ashtrays! Maybe that will help. Especially when it starts getting cold. Not fun smoking outdoors.