AnonymousFebruary 10, 2009 at 5:03 am
My doctor and I have been communicating regularly about my symptoms. She has come up with another test to take. She says that my symptoms have never fully followed a normal pattern for GBS or CIDP so she thinks that my pain and symptoms could be amyloid problems. I hate this more than anyone will ever know. I am scared again and not sure what to believe anymore. I do hope and pray that we get answers and maybe some help for me soon. Amyloid can be hereditay and i do not want my girls to ever have to live through this.
February 10, 2009 at 11:45 am
Try to e-mail JoanF, her husband was just dx w/that instead of cidp.
AnonymousFebruary 22, 2009 at 4:19 pm
Hi from a fellow NE Fan:
I know just how you feel. I also no longer am sure what I have. Was dx in 06 with GBS/CIDP, but when Neuro left the area have not been able to find anyone for care. Went to Mayo last Feb. and they told me, like you, dont have a normal pattern for CIDP. So now I sit here no doc, no meds or treatment. The Neuro at Mayo scared me saying he thought it was sarcoidosis, then later when I wrote to him said that was just MAYBE. Never did come up with what to do or take. Suggested water exercise. I say no to that, so just use my power chair and put up with the pain. Cant wear shoes or walk, but doing ok, considering. Scarey, isnt it.
Never heard of amyloid, will look it up. I read at the neuropathy association site. Hope they find some answers for you soon. Jean
AnonymousFebruary 23, 2009 at 1:15 am
hello there yes very scary. they are looking multiple ways on me. The bone pain is unbearable sometimes. they are looking for mgus and amyloid and bone fractures etc. we are doing MRI and Bone scans blood work etc. but emg has stayed the same for 3 years now so have to wonder what we are missing here. I am concerned that mayo clinic did not go further with your tests. and why they left you hanging like that. I have had many questions and so far I am blessed with a nuerologist that won’t give up on me even to find out what and why to all my symptoms. so hopefully we will get some answers because I would give anything to feel healthy enough to get back to work even part time. I will keep you updated as I am hoping you will too. you can private message me. take care and God Bless
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AnonymousDecember 8, 2006 at 9:12 am
Does any one know anything about Amyloidosis?
Dx with CIDP 3-05
Have tried plasma aphersis
Been having alot of trouble breathing Drs say I have Asthma and now right sided heart failure.
Last visit they brought up Amyloidosis and want to do a biopsy of abdominal fat to confirm. Could this be a new Dx of my problem or just another Dx to go along with the CIDP
I have looked at several websites on it and really don’t have a good feeling for whether I fully understand it. In the past I come to the forums and usually it explained better. please help once again. Thank you all in advance.
AnonymousDecember 8, 2006 at 2:23 pm
Larry you wrote,[QUOTE]Last visit they brought up Amyloidosis and want to do a biopsy of abdominal fat to confirm. Could this be a new Dx of my problem or just another Dx to go along with the CIDP?[/QUOTE]
This will depend on whether it is primary or secondary. There are several different levels or possibilities. You have gone through much of the usual CIDP treatments. They must have some reason for raising the possibility of amyloidosis. It can be associated with multiple myeloma. Have they recently done blood tests? If they have the results could indicate the possibility of monoclonal gammopathy.
What’s that? To quote from my web site – see my signature below. [QUOTE]MONOCLONAL GAMMOPATHY. Monoclonal means a single clone/copy of a plasma cell. Gammopathy stands for gammaglobulin, another name for antibody or protein. So monoclonal gammopathy is the presence in the blood of a large quantity of one antibody/protein – or paraprotein. The excess protein may be detected as part of any complete physical examination, through a process known as serum protein electropheresis performed on a blood sample. Neurologists are aware that there may be anti-nerve components in the protein that, in certain circumstances, may recognise components on the myelin or axon and react. Thus damage to the myelin and/or the axon of peripheral nerve cells occurs. Most people with a paraprotein in their serum will be unaware of its presence however. It may exist benignly for years without the bearer having any awareness of it or any symptoms of damage ever occurring. Yet some 3% of people with a paraprotein or monoclonal gammopathy may acquire a neuropathy.[/QUOTE]
The neuropathy – diagnosed as CIDP – you have may or may not be from monoclonal gammopathy. If it is then they should check about possible serious disorders stemming from it, including amyloidosis.
On the other hand the suspected amyloidosis may be a seperate issue.
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