My son is 13 and has neurofibromatosis type1. He has significant food aversions and is currently being seen by an OT for this. His neurologist and OT suspect he has aspergers but his dr does not recommend testing unless he needs EC services in school.
He is very rigid and regimented. He is awkward socially and will incessantly talk about video games and World war 2. He has a vast knowledge of these subjects.
Hi, I don't know the answer -- but since both CML and Gleevec toxicity produce anemia because of marrow suppression, maybe it's not possible to tell the difference. E.g., both would show a low reticulocyte count.
This full text paper on anemia from Gleevec https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.23879 shows that other signs such as red blood cell size can vary, so that doesn't seem to help. Sorry.
I was diagnosed with CML and given Gleevec 400 ml. After taking gleevec for 2 weeks doctor took additional blood test. My WBC dropped from 36.5 to 7.1 and all other blood counts came down to normal range. I'm wondering if gleevec could give such fast hematological response or I was possibly misdiagnosed originally. I don't and didn't have any symptoms, my spleen and liver weren't enlarged, no enlarged lymph. Should I get second opinion asap? Please, help me.
t want to see me, that fever was not from gleevec, and that I needed to monitor myself by myself by simply taken ibuprofen. This is what I did all last week and only this Monday he did a blood work.
For now, what can I do to help my body to build my immune system back? Any vitamins? I'll appriciate any advice.
Though not a usual presentation, neurofibromatosis type 1 may be associated with arrhythmia, stroke and other heart related complications. There can be high pulse rate due arrhythmia. It can be diagnosed by ECG/EKG or by holter test.
Take care!
The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you.
I was diagnosed last year and was immediatley put on gleevec 400mg/day.At my last consult my metabolic stats had risen,hence blood tests to determine if the gleevec is no longer working.I am still in firstphase and wonder what my options are if the gleevec is no longer an option.Amin pretty good form,just very tired and a lot of bone pain.
Is there any link between neurofibromatosis and mirgraines? I've been getting them every since I had my craniofacial operation when I was 17. I am now 31 and sometimes they get real bad. I have a few neurofibromas along my scalp that I can feel whenever I comb my hair, and was just curious.
Hello projectbaby,
Neurofibromatosis is a neurological genetic disorder. Cafe-au-lait spots are classic feature of Neurofibromatosis and are flat birthmarks with distinct edges are a bit darker than the surrounding skin. In light-skinned individuals, they are the color of coffee with lots of cream. In those with darker skin, they can be the color of a rich, full-bodied, black coffee. The spots can increase in size, number, and darkness throughout childhood.
I have CML and was treated with Gleevec for 4 years and achieved remission. I have for the past several months been experiencing sudden onset of weakness which last for hours, to days. My blood pressure which has remained under control for several years with atenolol has been running 145/105 and higher for the past three to four months. I have a feeling of fullness in my stomach, and I have sporatic episodes of mild coughing, this occurs maybe once a week.
When I was 39, I was diagnosed with Neurofibromatosis. I had a more thorough eye exam and found to have Optic Nerve drusen. Apparently, the Drusen are "hidden" behind the nerve causing the raised appearance, and as you get older, the drusen are more apparent. I don't know if Neurofibromatosis causes the drusen, but I do have both.
I am not a doctor, I am 22 and I have Neurofibromatosis (type 1) and have been diagnosed since as far back as I can remember. I got it because my mother also has it and so does my older brother. All the neurologists told me the disease is 50% heriditary. So hands down that is the reason why I have it. On the other hand, my mother has no history of the disease in her family. In her case the disease was spontaneous.
Hi,
How are you? Neurofibromatosis, is a progressive disease with involvement of the skin and nervous system as well as other organs. Neurofibromatosis (NF) occurs in two distinct forms: Type 1 (NF-1, von Recklinghausen's disease) and Type 2 (NF-2).
Early symptoms of Type 1 neurofibromatosis include multiple skin lesions (called cafe au lait spots) that appear during infancy. These lesions can occur anywhere on the body and become more numerous during childhood.
He just had an MRI that showed the tumors were still growing so they would have to remove both via surgery and they would not be able to save his vision. I am having a hard time believing there are no other options. Should they get a second opinion or is this truly the only other option for treating these tumors?
I also should add that for instance he can ride a bike with training wheels on in my house however bring it outside where there's dirt and stone and on the other side of our driveway is grass, he can't do it. also in the cardiac issues he has a complete right bundle block. he starts out with running and keeping up with is classmates then aafter 45 seconds has to stop running due to fatigue.
To have a second opinion we went to an another dermatologist he said it is not vitiligo and is 100 % curable this may be because of thyroid / liver problem and suggested LFT and thyroid tests.
Now am totally confused what to do, what all tests (another than the mentioned above) should we do so as to know the actual cause. Is there any tests / specific symptoms for vitiligo ?
i get my heart checked every 2 weeks now and i am fine with the qt thing. i take the chemo pill called gleevec and have to force myself to eat so i dont get sick when i take it. how long will these withdrawel problems go on? i have xanax to take (1mg) but dont work to good. i should would appreciate any advice from any one on how to deal with these issues, family dr says its anxiety but i think its the withdrawels from the high dose of elavil.
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