Connect
Chronic lymphocytic leukemia and Hereditary Nerve Pressure Palsey
I am trying to find someone who is dealing with the same issues I have. I was diagnosed in 2000 with Hereditary Nerve Pressure Palsy, which is a very rare neurological condition. Also, falls under CMT. Then in 2018 I was diagnosed with CLL. My problem is many drugs are toxic to me and none of my doctors are fully knowledgable of HNPP. So I'm really terrified when I have to start treatment because we will not know if the drug will be toxic, which could kill me. So, I'm trying desperately to fine someone who have HNPP or CMT and CLL.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Terloto,
I’m sorry to hear about the diagnosis and all that goes with it. May I ask how and what discipline diagnosed the HNPP and the CLL.
@cosynook, I'm tagging @terlato to make sure they see your question. Have you also been diagnosed with chronic lymphocytic leukemia and hereditary nerve pressure palsey?
@colleenyoung yes. I was diagnosed in 2000 by a neurologist with HNPP. It was the last neurologist I saw after seeing many he was my last hope and diagnosed it by doing an EMG and then ordering a genetic test. All the other neurologists told me it was in my head and I should seek counseling!
HNPP makes many medications toxic to me. It’s very difficult dealing with all the pain, muscle and nerve issues. There is not much I can take. I see pain management for nerve blocks and trigger point injections. This disease gets mostly my arms, hands, legs and feet.
Then to top of that in 2018 I was diagnosed with CLL. My doctors were not listening to me about how I was feeling even though my lymph nodes were swollen. They kept blaming everything on the HNPP and kept telling me I had a UTI because my white count was high. It was a PA who realized that something was wrong when I went for my yearly wellness checkup and referred me to an oncologist and infectious disease doctor which confirmed it was CLL and I also had Latent TB.
I’m really disgusted with the medical care in Las Vegas. The doctors do not want to listen to the patient. They think you are trying to tell them what to do. But in the end they realize I was correct all along. The problem is they have no clue what HNPP is and they do not take the time to read about it even if I bring them information on it.
Tried the targeted drugs for the progression of the CLL and my body could only handle 6 weeks. After 2 ER visits ( tried 2 different drugs with same 2 ER visits and 6 weeks) my oncologist realized I am unable to take these drugs. Even after telling him medications are toxic to me and now you are giving me a toxic drug! So he does not have answers for me about treatment! I’m in a no win situation. The last drug made my HNPP worse causing damage to my nerves. Every time I see him he apologizes to me for what I went through.
It’s not easy living with both. I just try to live the best I can and just learn to deal with it because I get no help or relief from the medical community.
And as far as treatment for the CLL I think I’m done. I just have to make it take its course.