Rare Neuromuscular Disease for Susan

That’s what her PCP said, “A rare neuromuscular disease”.  Beyond that he doesn’t know.

Waiting it so hard.  So is being patient when you want to scream, “What is taking so long?”  We are waiting for an appointment for Donna at a neuromuscular clinic and with a certain doctor who is supposed to be ‘the best’.  Susan’s primary care provider said that there is no way to get her in more quickly.  Sigh.

Please pray for her.  As we wait, her body continues to deteriorate.  She is almost completely wheelchair bound now. Pray that she will look to God for physical, emotional, and spiritual strength.

Pray for us as sisters.  We need to be wise as we advocate for Susan.

Rare Neuro-muscular Disease–Sister Update

It has been a while since I posted an update on my sister, Susan. In her previous update I wrote that she was bleeding behind the retinas in her eyes, and the retinologist informed us that she had appeared to have classic damage done by retinopathy, a condition caused by the long term presence of diabetes. This was hard for us to believe, because she had no symptoms.

Nevertheless, diabetes has now become a confirmed diagnosis for her. She has had lasar surgery on one eye to attempt to repair the damage done by retinopathy and save her eyesight. The surgery one her other eye will be next week. It is our understanding that it will be two to three months before we will know if the surgeries are successful.

Her primary care physician told her that her diabetes is unrelated to the progressive lack of mobility in her legs. He said she had a rare neuro-muscular disease and has referred her to a clinic in Ft. Worth which specializes in these types of diseases. He did indicate that it is possible that whatever caused the neuro-muscular disease may have also caused the diabetes. He had no name for the disease and no treatment for her. Hopefully all that will come from the specialists at this clinic. We are waiting for word from them concerning whether or no they will accept her as a patient. Waiting…….Waiting….. Waiting…..

Please continue to pray for her. She needs strength, understanding, and oh, yes, healing…..We all need help in the area of being patient with what seems to us to be an agonizingly slow process.

Diabetes Diagnosis for Susan

We are thankful for God’s intervention in Susan’s life.  He placed within her heart and mind the urgent need to get to an optometrist on Saturday.  The optometrist examined her and found that she was bleeding behind the retinas in her eyes.  At his insistence Susan went to a retinologist on Monday who found that her eyes were showing classic damage done by retinopathy, a condition caused by diabetes.  We were all stunned because Susan insists that she has had no diabetic symptoms.

Our family knows about diabetes.  Most of us been diagnosed with it.  We were not stunned that Susan had diabetes, but rather that she had no symptoms.

She will have laser surgery done next week on her right eye to stop the bleeding and then shortly after that her left eye will have the same procedure.

My thoughts about this diagnosis and lack of symptoms for Susan come in the form of a lesson for all of us.  You see, I believe the symptoms were there and had been there for a long time.   For the last several years, Susan has been totally focused on caring for Daddy and Mother, and other personal things in her life.  Because of her ‘tunnel vision’, she either was completely unaware of the symptoms or pushed them aside because they seemed unimportant  compared to the other concerns with which she was dealing.

The lesson? It is those quiet nagging things in our lives which are so easy to ignore that will one day become an all consuming crisis for ourselves and those who love us.  We need to pay attention to what is going on with our bodies and deal with our own health issues in a timely manner, even while life seems to be swirling around us in a chaotic fashion.  Easier said than done.

The story begins again tomorrow.

Another Sister Update–Retinopathy

My sister, Susan, went to the retinologist today. He ran many tests on her eyes and said that her eyes showed classic damage done by retinopathy, which is caused by diabetes. He feels sure that she is diabetic and has been for some time. Susan has never been diagnosed with diabetes and has had no symptoms of diabetes. Anyway, she is going to have blood work done tomorrow to confirm the diagnosis and then the doctor wants to do laser surgery on her eyes, to stop the bleeding behind her retinas I assume.

It is now that I understand why some other pieces of the puzzle haven’t fallen into place. Even though her tests show that she has no nerve damage, I think that once she has been diagnosed as diabetic, then they may find that some of her other neuro-muscular problems could be cause by neuropathy. God is at work here.

Thank you for your concern and your prayers.

Sister update

It has been a while since I shared any info about my sister.  I call her Susan. She has been to a neurologist and many tests of different types have been run.  All the tests come back normal, which would be wonderful except her body and general health is definately not normal.  We had thought that perhaps she might have multiple sclerosis or Lou Gehrig’s disease, ALS.  However, nothing, absolutely nothing is showing up in any tests whatsoever.   The doctor said, “Doctors hate to say, “I don’t know but I don’t know”.  He is working to get her into a neuro-muscular doctor in Fort Worth and we are praying that Susan will be able to seen by this doctor very soon.

The deterioration in her ability to walk continues to increase.  She falls easily, cannot navigate steps, and cannot carry anything because it affects her balance.  Her right leg has lost most of its strength and coordination, and her left leg now hurts all the time.  She is right handed, but must now do many things with her left hand.  She is currently living alone, but Darla, our youngest sister lives in the same town and is doing many things to help and support her.

Yesterday,  Susan felt an urgent need to get her eyes checked.  Darla took her to see an optometrist in Abilene.  He examined her and found that she is bleeding behind the retinas in her eyes!  He said that she MUST see a retinologist on Monday. (tomorrow) He is going to set up for her an emergency appointment with a local retinologist. The optometrist did not know if the bleeding is related to the other health problems she is having.

Please pray for her.  There are many factors complicating this situation, many of them cannot be shared over the internet. We have received in several ways assurance from God that He is present and working in her life.  There have been many needs met in unexpected ways and from unexpected sources.  I know that He will continue to meet need as they arise.  If you have experienced medical problems and issues related to them, then you know that paying  medical expenses is an issue that ranks right up there at the top of the list. She is having a major financial struggle with these mounting expenses. Please pray that God’s grace will abound in that area as well.

Pray that God will heal her. Whether He chooses to do it through doctors and medicine or through a miraculous touch of His hand, is not important to us.  We need His wisdom, His Guidance and His Provision as we, once again, as a family walk down this path of caring for a loved family member who is in a possible long term health crisis.


She has asked that I no longer use her name, so I will call her Susan.

Susan had the tests a couple of weeks ago.  They all came back negative.  There were no answers for why she is losing her ability to walk.

She is making plans to go to Baylor Medical in Dallas.  Money is very much an issue.  Please pray that God will meet her needs here.  He has already done so in many areas.  He has provided some much needed equipment that will help her with her daily living.  She now has a motorized wheelchair and such things.

Now we just need answers.  We need to know if this is a condition that can be reversed, that can be halted in at its present stage, or will just be progressive.  We are continuing to pray for God’s Wisdom, for the doctors she will be seening, for the money needed to get her to the doctors, etc.   Please pray with us.

My sister

Please pray for my sister.  She prefers that I not use her name and so I won’t.  She is having some very serious health issues that are ao far undiagnozed.  She has a huge battery of tests tomorrow (Friday).  She is losing mobility in her right leg.  Her right arm and hand is losing strength and coordination.  She is having touble swallowing and she is falling frequently.

She is not married and lives alone.  Pray for answers so that we will know what we are dealing with.  Pray for God’s healing.  Pray for wisdom for all of us.