Chronic lymphocytic leukemia and Hereditary Nerve Pressure Palsy

@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?

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?

I can't open that article,

@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.

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.

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.

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

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

Hey there @terlato I am so glad to find your post. I was recently diagnosed with HNPP also and new to any info about it. I'm so sorry to hear you have CLL tho ... any progress since this original post? Sending good vibes your way!

Hi @rivermaya34. So sorry to hear you have been diagnosed with HNPP. This is such a mysterious disorder. Like I said most doctors have no clue about it and even when you bring them information, they don't read it. It's very discouraging. Very difficult to find a neurologist that know about HNPP. One even asked me if I made up that disorder!
I did go on Imbruvica for 6 weeks and was in the emergency room twice. It was very toxic to me. I had internal bleeding. Had to get 2 infusions of Iron. Chest x-ray showed scar tissue in the lungs! Now my Oncologist is worried about putting me on another targeted drug. So we have no answers on how to deal with the CLL. The other problems with HNPP is your feet. Don't wear tight shoes, it will make them numb. Your hands, be careful lots of things you do can cause numbness. It gives you the same symptoms of carpal tunnel, but actually we don't have that, it is from the HNPP. Don't let a doctor convince you to have surgery for that because it is useless. You can also get electrical pulsations in your body, which sometimes throws of an EKG Don't worry it's part of it. The touch of your skin can feel like you have a black and blue, but again it's the HNPP. Everyone's symptoms are different. Unfortunately, mine is progressing as I get older and I think the CLL has made it worse. Do all your research on it. You can get the medication list from the CMT website. Carry that with you all the time. If you need any surgery there is a positioning letter that the surgical team needs to know. Also, the anesthesia reacts on us differently. It might take longer to come out of it, vomiting and BP drops. They need to know that before surgery. Even the BP cuff can cause a problem if too tight. Pressures anywhere for a long time can cause damage. Clothing too! Join NORD(National Organizaiton for Rare Disorders) GRIN (Global registry for inherited neuropathies) and HNPP/CMT (Charcot Marie tooth disease) so much information from them. Join the facebook group for HNPP and CMT. Lots of good information there. I suffer with lots of muscle pain, sometimes off the chart. But, this is very interesting. I was dealing with GI symptoms and all my test were coming back good. Then I went for a Hida Scan for the gallbladder and they gave me CCK(it's a hormone) which makes the gall bladder think you are eating. For some unknown reason all my pain was gone. I felt so good! So I researched CCK and it is being used in trials for pain and GI symptoms. Doctors think the vagus nerve is the cause. Don't know if the HNPP will damage the vagus nerve. I was pain free and symptom free for 5 weeks, now all my symptoms are returning. My doctors have referred me to a neurosurgeon which I don't see until June. The endocrinologist said there are hormones she could give me, but they are given to people with pituitary tumors or carcinoid tumors. The side effects are irreversible so she does not want to take the chance. So here I am again, no treatment for the CLL and in severe pain again.
Back to the HNPP for you, please read all you can about it. Be careful on any medications you take. If you feel any reaction once you take something that means it will get worse, so avoid, no matter what it is. It can be itching, nausea, feeling like you want to jump out of your skin to stomach pain. I have at least 10 medications that I can't take and most are antibiotics and pain meds. I will keep you informed to see if the HNPP can cause problems with the Vagus nerve which runs through all your organs. So do some reading on that too. The more you know the better for you to explain to your doctors. And if they don't listen or believe you, move on to another doctor. Some think the symptoms are in our head! Please feel free to contact me anytime if you need more information on HNPP. I would be happy to send you the letter for surgery. It use to be on a the website for HNPP, but that website no longer exist. That one had so much information and now it's gone. But there is a lot of information out there about HNPP/CMT.
We do fall under CMT1 that's why they have joined together on the research. Good luck to you and I pray you don't get any of these symptoms.