joanf

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

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

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.

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!

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

Joan,
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

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

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

Joan,
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

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

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.

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.

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!

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)
Kiwi

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!

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 QuitSmoking.com. 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

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

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.