[Leslie]

Hey gang -

Hope the holidays are going well for everyone!

I had my visit with a neuro at Johns Hopkins. All went well and I was very impressed with the doc and the medical center. The results are back from all the testing. I missed the docs call yesterday to discuss the results and she is now on vacation for two weeks so I'll have to wait a bit longer....however, her office faxed copies of the results to my PMC doc and I just happened to be in there today picking up a prescription. My PMC's nurse said that since she "knew I always wanted copies of my results" she copied the summary and gave me a copy...

So, please tell me what this means: "In addition, her blood work shows the possible IgG kappa monoclonol gammopathy vs. possible low concentration kappa Bence Jones proteinemia. Recommend followup serum IFE." I have googled this and looked at PubMed and still can't figure this out.

Also, my A1C is 6.5, my fasting glucose was 109 and a 2 hr glucose tolerance test of 158. I have an appt with my endo doc next week and we will certainly go over these numbers.

Thanks and Happy Holidays!

[glenntaj]

--that the glucose readings are in the sort of borderline impaired glucose tolerance range; not quite frank diabetic, but above where they should be optimally (assuming this test was done fasting).

Now, as to the other findings, I'm assuming they came from a protein electrophoresis, in which the proteins in your blood are measured, including the antibodies. The IFE is an immunofixation electrophoresis, which is designed to check for abnormal antibody proteins (they'll probably do a quantitative immunoglobulin measurement at the same time to determine just how MUCH of these are there, too).

Specifically, they're looking for monoclonal antibodies or M-proteins, which result when the bone marrow, which produces all of our blood components that are not plasma, overproduces and releases incomplete/immature protein strings all of the same type (that's where the "mono" comes from). In this case it appears they might have detected an IgG (immunoglobulin G) kappa chain (there are various classes of immunoglobulins, each with different functions in immunity reaction--G, M, A, E, D, in reverse order of normal concentration). The kappa refers to a particular type of immature protein chain pattern.

The reason this is important is the condition of monoclonal gammopathy has been associated with neuropathy--the immature proteins often cross-react and bind with components of peripheral nerves. Moreover, presence of such proteins can be a sign of certain types of blood dyscrasias.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

[dahlek]

you are getting the testing you've needed to get what help you can get! That is good!

A word of caution tho? The only real satisfaction you get from all this is in the validation that something IS going on! Treatments, unfortunately are varied and have limits in terms of how much help they can be. I truly wish that you find the right combo of treatments to help you gain parts of your life back!

Keep faith, don't ever lose hope. 's - j

[Brian]

Hi Leslie, regarding those blood sugar levels.... i would be trying my hardest to get those sugars levels back down to normal ranges and keep them there, low carb dieting and exercise can help lower sugar levels a lot and get rid of the real possability of frank diabetes happening, i am not trying to scare you but the warning signs are there now and there is no telling when frank diabetes will show its ugly face, whilst you have a chance now to do something about it, i would really take it seriuosly, even if by any chance the high blood sugars are not the cause of your PN, knowbody needs to deal with diabetes on top of PN.

Unfortunatly there are still a lot of the medical proffessionals out there that don't take prediabetes seriously, i still come accross doctors these days that try to argue the point that only full blown diabetics get nerve damage, i know it certainly can and does happen at Prediabetic levels, i hope one day they will stop their stone age way of thinking.

best of luck anyway,
Brian

[Leslie]

Originally Posted by glenntaj

--that the glucose readings are in the sort of borderline impaired glucose tolerance range; not quite frank diabetic, but above where they should be optimally (assuming this test was done fasting).

Now, as to the other findings, I'm assuming they came from a protein electrophoresis, in which the proteins in your blood are measured, including the antibodies. The IFE is an immunofixation electrophoresis, which is designed to check for abnormal antibody proteins (they'll probably do a quantitative immunoglobulin measurement at the same time to determine just how MUCH of these are there, too).

Specifically, they're looking for monoclonal antibodies or M-proteins, which result when the bone marrow, which produces all of our blood components that are not plasma, overproduces and releases incomplete/immature protein strings all of the same type (that's where the "mono" comes from). In this case it appears they might have detected an IgG (immunoglobulin G) kappa chain (there are various classes of immunoglobulins, each with different functions in immunity reaction--G, M, A, E, D, in reverse order of normal concentration). The kappa refers to a particular type of immature protein chain pattern.

The reason this is important is the condition of monoclonal gammopathy has been associated with neuropathy--the immature proteins often cross-react and bind with components of peripheral nerves. Moreover, presence of such proteins can be a sign of certain types of blood dyscrasias.

See:

http://neuromuscular.wustl.edu/antibody/mprotein.htm

Thanks, Glenn. I think I understand....So, is this something serious and can it be "fixed?"

[Leslie]

[QUOTE=Brian;430531]Hi Leslie, regarding those blood sugar levels.... i would be trying my hardest to get those sugars levels back down to normal ranges and keep them there, low carb dieting and exercise can help lower sugar levels a lot and get rid of the real possability of frank diabetes happening, i am not trying to scare you but the warning signs are there now and there is no telling when frank diabetes will show its ugly face, whilst you have a chance now to do something about it, i would really take it seriuosly, even if by any chance the high blood sugars are not the cause of your PN, knowbody needs to deal with diabetes on top of PN.

Unfortunatly there are still a lot of the medical proffessionals out there that don't take prediabetes seriously, i still come accross doctors these days that try to argue the point that only full blown diabetics get nerve damage, i know it certainly can and does happen at Prediabetic levels, i hope one day they will stop their stone age way of thinking.

best of luck anyway,

Thanks Brian! My endo doc had already done a 2 hr glucose tolerance test about 3 months ago and all results came back fine. I am wondering if he will take these results seriously. I certainly am and if he doesn't I'll be looking for a new doc. I have already been researching diabetes and the proper diet, exercise, etc. Our hospital offers a 30 hr class on diabetes and how to live with it. I've enrolled. While I was out finishing Christmas shopping my husbands cleaned out the cabinets of all "sweet stuff" so we are all taking this very seriously. I've joined a walking group so we are definately having a lifestyle change. Just to bad it's at Christmas. I can't count the cakes and cookies I've had to pass up!!!!

[glenntaj]

--monoclonal gammopathy is certainly something that bears watching, but in about 65% or so of cases there is no other associated systemic disorder. In that case it is labeled "monoclonal gammopathy of undetermined signifigance" of MGUS for short.

Unfortunately, even in such cases, the rogue antibodies can interact with nerve and produce neuropathy symptoms.

This is not an easy situation to fix--either from the neuropathic standpoint or from any others. The treatments tend to be immunosuppresant, along the same lines as are used for many blood cancers, and tend to have their own significant side effects . . .unless there is evidence of a systemic disorder, treatment for any neuropathy linked to it tends to focus on symptom reduction, with a policy of "watchful waiting".

[jakatak]

I didn't know I had MGUS, until I was diagnosed with PN. I was told it was about the size of a freckle, and in past three years, it hasn't grown. My doctor told me that there are many people running around that may have this disorder, and just don't know it, because they aren't typically tested for this malady. It is a pre-cancerous condition that can lead to multiple myeloma. So, one does need to be tested on an annual basis. However, it doesn't necessarily lead to MM. It is a minor concern, but mine hasn't changed in size, and that is a relief.