Hold on….

May 18, 2010 at 12:10 am

My heart goes out to you, Dawn, with so many serious medical (and life)issues in those you love. It must be so hard for all of you to cope with the diagnosis and extent of disease that your mother has just been told she has and also the cascade of events that this has lead to on top of all the others. You are strong and especially strong for those that you love, so all the advice I can say right now is to hold on and live each moment as well as you can with both your parents and with your kids, keep love in your heart at all times, and do not forget to take care of (and give love to) yourself as well as all the others that so need it. There are things in life that cannot be changed from needing to be faced and over this we do not have much control in life, but we do have control over how we face them–so gather courage and lead forth into this battle with love. I am so sorry that Kevie has relapsed, but am glad that he was being carefully monitored and that there is a treatment that does work well for him and should help him soon to be stronger and better again even if it is hard to live with being ill or having to have so many treatments. For you, cry when you need to, but mainly live each day with love in your heart–love is way more powerful than any illness, than any challenge that life throws at you.

Hold on

December 12, 2009 at 7:47 am

I hope that you get some answers soon. It is really hard to not have a diagnosis. this is the state that I have lived in for more than two years. I have come to now waffle between wanting to know and not wanting to know–maybe like you are at the present. I want to know if there is something on the better end of the spectrum or that is treatable so that something can be done and I could get better. I don’t want to know if it is one of the really bad diseases for which nothing can really be done to stop it. Unfortunately, you cannot have it both ways.

One important thing for your doctor(s) to think about is there is more and more evidence that pre-diabetes can be associated with neuropathies. You may not have full-blown diabetes, but they may want, based on these findings, to test you more carefully for early or pre-diabetes.

As someone who works with people (children) with complex diseases and as someone with a complex something myself, finding a diagnosis is like having a bunch of puzzle pieces to shuffle. Sometimes there are not so many pieces and a pattern to have it fit together is easy to see. Sometimes there are a lot of pieces and pieces missing and pieces that are present but painted over so that all you see is the shape. In this case, trying to find a diagnosis is like trying to put an all white puzzle together. As more information is found, the pieces are uncovered so one sees colors and as a couple of pieces fit together one starts to have a way to find attachments for the other peices. Often there is an “Aha” moment when the pieces start to come together. A good puzzlemaster (neurologist in our case) helps to optimize finding a start–either putting pieces together or uncovering the colors on the pieces. Sometimes though, still, it takes work and persistence to get the puzzle put together. Hang in there.

WithHope for a cure of these diseases and a better way to diagnose them.

Hold on

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

Hold on

July 17, 2008 at 4:26 am

Linda, Keep holding on to the peace that you have found the last couple months. It is a GOOD thing for this neuroophthalmologist to be thorough and to rethink through things, although it is unsettling. I hope very much for you that you are found to not really have a demyelinating process, because it would be better for you even if it is unsettling to have people rethink things and shake up your current space. Maybe he was just thinking out loud. Whenever someone has more than one problem, medical people try to see if it might all be explained by one thing.
It is great that you have had the opportunity to appreciate life recently.
We will be thinking of you with the testing tomorrow and the unsettledness that the next three weeks may bring.
WithHope for a cure of these diseases.