[Janet Joslin]

I talk to my oncologist yesterday about this rash that is on the body, and he said that has nothing to do with the NDS. And I found out that my insurance which is Sutter does not contract with Stanford so now I need to find a doctor at UC that my insurance United healthcare will cover. I started taking the Neurontin again and the rash isn’t as bad as it was but it is still causing a sensitivity especially on my arms right now. I fear that it is the gabapentin or Neurontin as I said. I am praying that it isn’t because even with the small amount of Neurontin I have started with I noticed how it just helps with anxiety, and the sweating that I suffer from seems to be less. Neurontin helps RLS which I have, it’s supposed to help the sweating which I have, and helps with anxiety which I have. For the first time in a long time I had hope that it would stop these night sweats And neuropathy, rls and pain. With Summer heat coming and living with no air-conditioning, I just am so afraid that this sweating where I suffer from will be intolerable. I am going to just stay on this low-dose for now and hope that even if I have an allergy maybe it will go away after a while.

[Janet Joslin]

Not yet. But no one has said they have gotten a rash. Is this part of it, with a temperature and flush?

[Janet Joslin]

This sounds so exciting if I can get into see or on the video to see Dr. Greenberg. I sent you I am now so I hope that tomorrow we can get it going. This sounds too good to be true

[Janet Joslin]

Thanks so much for responding. When I had the stomach bleed they went in and found that it was ulcerated and they cauterized and stopped the bleeding. I went home but then I bled some more and they went in and did it again. Since then I have had about five endoscopy’s because my hemoglobin would get too low but they couldn’t find the source and they said that the watermelon stomach was not there! Figure that one out? About five times with my hemoglobin going down and my platelets, And my iron in my white cells were always on the low end they would do the camera endoscopy’s and again there was only one time that the doctor said he thought he saw something kind of like a bruising but it was in my intestines that go from my stomach and he cauterized it. But he wasn’t sure that could’ve been the cause of the bleeding! He said that I did have diverticulitis but saw no bleeding. So far there had been four different gastroenterologist because everything was changing in Auburn as far as gastroenterology went. So a year ago I moved here to Petaluma California And saw a new gastroenterologist who did the endoscopy of course because my hemoglobin had all dropped and he couldn’t find anything to cauterize. By the way through all this we found that I had a fib, and congestive heart failure. In my heart doctor was giving me blood thinners and other medication for my heart. So of course I had to make a choice of whether I was going to have a stroke or have a Gastro bleed! But then my heart doctor that was here in Petaluma said there was a new procedure Called “the watchman” That would prevent me from getting a blood clot so that I could get off the blood thinners! It was something that they put in my heart, a device that would catch the blood clots. It was non-surgical and they were able to go up through my groin artery and do it. I am the first want to have this done in Sonoma County and probably because I had the issue with the bleeding! Doctors flew in from all over to observe the surgery I was famous! So my doctor told me I should see a hematologist because through all this my blood saturation was very low white cells still low platelets still low. He suggested that I have iron transfusions regularly. So then I go to the hematologist and He says that the iron problem is not the problem with the low blood cells and wants me to have a bone marrow biopsy. Another words he says I have two problems! End it is up to my gastroenterologist to solve the iron problem then it Hass to be from pleading! And of course the gastroenterologist is not finding where I am bleeding and my poop tests are not showing any blood! He does the biopsy and comes back with the MDS with chromosomal changes and tells me we don’t want to do anything now that he’ll see Me in six months. So here I am trying to find out from others if they have any similar issues. I am going to find a Doctor Who is an expert at MDS probably at Stanford, and hopefully get some answers. This has been going on for me for over 10 years. Can you believe it that there was never a doctor that would answer my questions as to why my iron and my platelets and my WC count are always on the low side? Even though I had had breast cancer and radiation none of my doctors figured this out.. And still haven’t!
At this point my thoughts are to do as much as I can in alternative and natural ways to relieve any stress in my life so that my body can do it’s own healing. That doesn’t mean I expect a cure. I am so tired of dealing with doctors that don’t have a clue about ME. The first thing I’m going to do is find out about something called GO FUND ME. I don’t have any money for anything, not even a massage so that I can keep myself relaxed. But also I am going to work with a shaman, who uses magic mushrooms end guidance. I have read a lot about this and if nothing else I will get to know myself and my past stress issues that have caused this disease in me. I know that everything comes from my thoughts and my ideas about myself. Then I will do what is called Microdosing. Again what it does is nothing like a LSD trip or anything it just raises your joy in life. This way I can except whatever happens and whatever I have to go through until I pass on. I am 77 years old I have no fear of death. But I have had a very Very stressful life both emotionally and financially. I see this as a wonderful opportunity to finally heal my spiritual self and go on to whatever comes next, which I believe is reincarnation. My friends find me to be very inspirational because of my attitude towards my life and my long time issues with my health and autoimmune disease. This is healing in itself. If I can help others with just the way I am going through this thing that makes it all worth it for me!

[Janet Joslin]

Thank you for responding. I guess when you read my post you didn’t understand that I have had the bone marrow biopsy and that the results were the MDS with chromosomal changes putting me in the medium range. But the hematologist Doesn’t connect the iron deficiency anemia with the MDS he thinks it is something else. I don’t have enough ferritin in my blood and I have to have iron infusions because taking iron doesn’t work for me it won’t absorb.I don’t have an itching problem anymore than usual but what I do have is a problem with thinning skin and sores that develop them because my platelets are low they just don’t ever seem to heal.

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