Chronic lymphocytic leukemia and Hereditary Nerve Pressure Palsy

Posted by terlato @terlato, Oct 22, 2021

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@terlato

I am bringing @oceantroll, @cherylmcg, and @yellowdoggirl into the conversation so they can add any information they may have to share.

You might also be interested in reading this article.
https://hnppwellbeing.com/2017/08/02/what-to-avoid-with-hnpp/

Did you ask your doctor if you could just come in for a visit to talk about your options rather than for a battery check?

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@amandaa

@terlato

I am bringing @oceantroll, @cherylmcg, and @yellowdoggirl into the conversation so they can add any information they may have to share.

You might also be interested in reading this article.
https://hnppwellbeing.com/2017/08/02/what-to-avoid-with-hnpp/

Did you ask your doctor if you could just come in for a visit to talk about your options rather than for a battery check?

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Thank you so much. The more information I can get the more helpful it will be when I start treatment.
Come in to see my doctor or make an appointment with the Mayo Clinic?

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@terlato

I can't open that article,

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@terlato - Sorry about that. Try it now. 🙂 I also linked your post to the brain and nervous system group and the neuropathy group to give your discussion a little more visibility.

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Thank you for bringing in this discussion. While I have CMT2 undefined, which may actually be diagnosed as SORD (based on a newly discovered genetic defect)….the list of medications to avoid is so helpful. I actually was prescribed two medications on the most like toxic list - 3 separate times from 2014-2019! I wish the prescribing doctor and I had known….I am taking hydroxychloriquine for autoimmune and see while chloroquine is on the list hydroxychloriquine is not.

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I know taking medication is very risky. I carry my card with me all the time. Doctors just don't understand the dangers. I took Macrobid once and did not know it was toxic. I got deathly sick and no one knew why. This was years ago before they posted the medication list. Now that have CLL and possibly might have to go on treatment no one has any idea what Imbruvica will do. Very terrifying situation.
Thank you for commenting.

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@terlato

Thank you so much. The more information I can get the more helpful it will be when I start treatment.
Come in to see my doctor or make an appointment with the Mayo Clinic?

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I'm sorry, I don't know anything about treatments for those things. I do sincerely wish you the best, however!

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@yellowdoggirl

I'm sorry, I don't know anything about treatments for those things. I do sincerely wish you the best, however!

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Thanks so much. I'll just keep searching and hopefully I can get some answers.

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