Dear Mr. Hewitt,Thank you so much for your response! Somehow, it makes me feel better to know there is someone who totally understands the devastation and heartache our family is currently going thru. I was told today that she is being started on IVIG treatment. They put her on Heparin yesterday evening; and were hoping to remove the catheter from her neck (where she had the plasma exchange treatments), but said her blood was too thin right now to attempt that.
Hopefully, they will get that adjusted and it can be removed.
To vent for a moment — it has been so discouraging and disheartening to me to see how a large portion of the medical community has become so numb to the cry for help from someone in need. I keep thinking if only ONE of the doctors (particularly neurologists) had just kept looking or even said, “hey.. DO NOT know what is wrong with you BUT we are going to keep looking” months ago….would she maybe, just maybe be better? If the radiologist had taken the time to read her MRI correctly???
It was not until she had another fall that put her in the hospital that an ER doctor said something is not right..let’s get her admitted.. THEN we were so fortunate to get two Neurologists that WANTED to find out what was wrong….they didn’t hesitate to get other doctors involved, then did another spinal tap and confirmed the JC virus. They did say the only way to absolutely be sure of PML is to do a brain biopsy, but I don’t believe that is going to happen.
They have brought in an Infectious Disease Specialist also who seems very concerned and interested in finding the best possible treatment. It is just so sad to me that it took this long to finally find the right team of doctors. We even had to beg her EX-primary care physician in the beginning of all this LAST August, 2010 to have an MRI just to rule out a stroke. It has definitely been a battle we were not prepared for.
I know that my mother is in a battle for her life and as a family, we will do anything and everything possible to help her. With all the technology today, it is still baffling that we still have such littl knowledge of some things.
So, off my soap box!!
Please feel free to share whatever I have said. I keep telling my mother that she could very possibly be the one that a treatment is going to cure and look how many other people she will be helping. The doctors keep telling her that they are learning from her.
Thank you for all the continued prayers… I do believe in the power of prayer and the power of positive thinking. I will continue to pray to the Lord that He will bless my mother and heal her.
Thank you again for taking the time to answer me. Sorry I get so “windy” in the email…. a lot of stress, sadness, anger, and every emotion out there is within me right now. I know you understand.
Thank you and bless you for all you have done and are doing to bring awareness to this dreadful disease, PML [ Progressive multifocal leukoencephalopathy ].
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