Posting Etiquette

Good post!

I agree! Good post!

Article on patients using websites to find support for their diseases

[url]http://www.cnn.com/2008/HEALTH/10/09/ep.health.web.sites/index.html[/url]

Jan, great post. You should bring it to top every so often. Sometimes we need to be reminded and as new members join they can read this.

Julie, good website, I checked it out.

Thank you ladies
Shirley

Good post, Jan. You are very right. This is an emotional place to be and sometimes we can let our emotions get the best of us. Thanks for the little nudge to keep going in the right direction!

take care!

jamie

Great site Julie! Thanks for sharing! So true Emma! So true!

Great post Canada. I agree 100%. And yes, keep bringing it up for the new members to read. And, Julie, thanks for the article. Canada, this thread is really important, thank you for writing it.
Emma

[FONT=Garamond]Thanks for the post Jan, the way I look at it there are no 2 people the same. What works for one person, may not even help another person. I’m no Dr & I don’t have a desire to be one.[/FONT]

For those who know our story, my husband and I got our second opinion at Cleveland Clinic. Dr. Levin told us up front before even any tests that he did not thing Bill had cidp. Asking how he arrived at that he said the emgs do not convince him.
Well he sent a sample of blood to have genetic testing(DNA) and he has an inherited amyloidosis (Familial) It affects the organs and no treatment except a liver transplant to change the cells in his liver. I am very upset with of course our nero here. There was no protien in the spinal tap and no onion bulb in the bioposy. I told him if no onion bulb then how can you say cidp. He said not all people show onion bulb. Also he does not do genetic testing as medicare does not pay for it. He kept looking at me not Bill as he knows I do not trust him, I believe he can see it with my demeaner. I cannot understand how he can keep treating him when there was little proof. We are gathering our records again and will decide to go to either Mayo or Boston u, for more testing. They will do a skin testing in the stomach to confirm. We are hoping our children will not have the gene and that will be checked out also.

Do not know where for transplant either. A consultation will be done first explaining all. Please be aware his symptoms were just like cidp except Clev Clinic-Dr. Leven said it would have been up his arms by now although it is starting. We waisted 10 months with this doctor and me always fighting him on things. My husband is very calm and does not seem upset with him . He says it is not worth getting yourself upset as we cannot do anything about it.

They are trying hard to get doctors more aware of this rare disease. Cost for dna to us is not as important as my husbands health and a correct dx. I am just shattered.

wondering if there is an organization for this disease that may help with the cost of genetic testing. also, is the doc going to do the test and have you pay cash, or will he not do it at all? good luck with all of this. i wish you well.

I am not defending the neuro because I also had a very bad experience with on but on the other hand (not really knowing your situation) I do not have the protien in spinal and my EMG was pretty good when they did it the first time but still diagnosed with it because all the clinical symptoms lead there along with the fact that my PCP had done every test in the book except genetic testing which unfortunately I had done 17 years ago because of my son’s medical issues. My arms did not become involved until nov/dec last year and it was mainly pain at first then some loss of function but now I have stayed where I am since then. I am so sorry to hear what your husband is going through but it is probably a good thing for him to handle this the way he is because stress does not do the body any good and besides he is right about not being able to do anything about it now so you should go from here.
Iam not coming down on you because God knows you need to vent, I do it alot and it keeps my blood pressure down but my husband is the same as yours by how calm he is, at least in front of me, which makes me mad sometimes because I start feeling he doesn’t care if I get treatment. The fact is you deal with things differently just as my husband and I do and it can be frustrating!
I am glad you found out what you did but not about what it is, CIDP is hard to diagnose and really there are so many differences from person to person I know because I am not typical, but I do agree with getting another opinion if you are uncomfortable with a dr and even if you are! Good luck to you both and I hope everything turns out okay! I wish you well!

[QUOTE=jodylynn67]I am not defending the neuro because I also had a very bad experience with on but on the other hand (not really knowing your situation) I do not have the protien in spinal and my EMG was pretty good when they did it the first time but still diagnosed with it because all the clinical symptoms lead there along with the fact that my PCP had done every test in the book except genetic testing which unfortunately I had done 17 years ago because of my son’s medical issues. My arms did not become involved until nov/dec last year and it was mainly pain at first then some loss of function but now I have stayed where I am since then. I am so sorry to hear what your husband is going through but it is probably a good thing for him to handle this the way he is because stress does not do the body any good and besides he is right about not being able to do anything about it now so you should go from here.
Iam not coming down on you because God knows you need to vent, I do it alot and it keeps my blood pressure down but my husband is the same as yours by how calm he is, at least in front of me, which makes me mad sometimes because I start feeling he doesn’t care if I get treatment. The fact is you deal with things differently just as my husband and I do and it can be frustrating!
I am glad you found out what you did but not about what it is, CIDP is hard to diagnose and really there are so many differences from person to person I know because I am not typical, but I do agree with getting another opinion if you are uncomfortable with a dr and even if you are! Good luck to you both and I hope everything turns out okay! I wish you well![/QUOTE]

Jody: I guess I am upset because we have wasted 10 months with him. He never gave us anything. Lots of things happened. for example: He did not want to give me the emg or bioposy sample(had to be sent from ut thru him)
but I insisted. He said we wouldn’t need them. Just trust me he said. Well I insisted anyway. The doc in Clev wanted to see the emgs and I knew he did not send the whole thing as the first neuro Bill went to showed a graft also and so I knew he did not send it all. I would not have known otherwise. Clev did not want just the report but the actual emg(the table and graph showing the scale) Other things and lastly he said amyloidosis is not treatable and they do not usually do liver transplants for amyloidosis. You see I know we need to go forward but I also have seen my sister die at l7 because of getting hepatitas thru a non sterle needle and a mother whose doctors couldn’t agree on treatment and she died.
I believe Doctors need to be accountable for their actions or inactions and if they do not know why someone is not getting better after all treatments have been done they need to suggest for them to get a second opinion and he did not. I talked to someone at Boston U (one of three hospitals for this disease) and they said a liver transplant.
Thanks for the comments but it will take awhile for my anger and sadness to leave me. I also have had to push my husband to do anything and I do not know if he is in denial or just really thinks it’s ok.

[QUOTE=Jamie]wondering if there is an organization for this disease that may help with the cost of genetic testing. also, is the doc going to do the test and have you pay cash, or will he not do it at all? good luck with all of this. i wish you well.[/QUOTE]

Jamie: The genetic testing was done already at the Cleve Clinic in Ohio. Dr. Levin did not ask he just did. I do not know for sure if Medicare will pay but I will soon find out. Hopefully Medicare will pay for a transplant. I sure hope so.
thanks for your concern. We have two children who will probably get the test also. They of course are concerned for their children so I am sure they will get it done but first we need to know more about the disease. My brother-in-law thought his uncle had it for 5 or 7 years before he died. I know he was very ill and completely in bed at the end for his wife to care for him, as my sister was with hepatitis C.
Just pray for us both

continuing to ask God to help you in every way possible. this must be so difficult for you, especially with the things that have happened in the past. i wish only positive news comes to you in the times ahead.