@humblyhoping sorry for the confusion. Taxol or paclitaxel was the chemo drug that I got. I had tons of side effects (diarrhea, loss of hair/ taste buds/ toenails), weird rash on feet and of course neuropathy.
I hope the pregabalin works out for you. It did not for me. It caused considerable swelling in my feet and a general overall feeling of fatigue, more so even than gabapentin. So, after less than 10 days I stopped taking pregabalin and returned to gabapentin.
But as this forum illustrates, every person is different in the reaction to medications. A treasure? Trash? Sometimes neither, sometimes both!
Exactly. Each person is different and what works for one may not for another. You won't know until you try it. Some get terrible SEs with the first dose. Maybe titrate up on the PreGabalin starting with 25mg. Make sure that your doc prescribes enough capsules so that you can titrate to an effective but tolerable or titrate back down. I'm on 75mg 3X per day; upon waking, late afternoon and bedtime. I find that if I miss the afternoon dose I don't feel much effect. It got rid of some diabetic neuropathic chest pain and some infernal itching. At 77 YO, I'm on it until my last breath regardless of any effects it may have. The itching would be intolerable should I ever get off.
I’m new to the group and I’m hoping that I will be able to see a Neuro Dr at Mayo in phoenix soon. I’ve been fighting Neuro for about 5 years and I would like to know why I’m always told I have peripheral Neuro but none of the dr’s test me to tell me which one. Is this normal procedure?
I’m new to the group and I’m hoping that I will be able to see a Neuro Dr at Mayo in phoenix soon. I’ve been fighting Neuro for about 5 years and I would like to know why I’m always told I have peripheral Neuro but none of the dr’s test me to tell me which one. Is this normal procedure?
Welcome @berthamincox, I'm just a patient like yourself. You ask a great question but I think the answer is pretty complex. The first part diagnosing whether or not you have neuropathy seems fairly easy with the physical exam, medial history and testing. Determining the cause is more difficult and quite often goes unanswered. I shared my neuropathy journey in another discussion but it sounds similar to how you started - https://connect.mayoclinic.org/comment/310341/.
Welcome @berthamincox, I'm just a patient like yourself. You ask a great question but I think the answer is pretty complex. The first part diagnosing whether or not you have neuropathy seems fairly easy with the physical exam, medial history and testing. Determining the cause is more difficult and quite often goes unanswered. I shared my neuropathy journey in another discussion but it sounds similar to how you started - https://connect.mayoclinic.org/comment/310341/.
One thing to check and that's to see if anyone is doing research for your particular issue. If they think that you would make a good candidate they would be happy to see you. They can't always find enough local folks to help fill their needs. I'm about 180 miles from Rochester Mayo so it's no biggie to travel [except for some winter days]. I've participated in a few studies over the last 6-7 years.
At the end of my first visit the doc said I had 3 choices. Do nothing, have the adrenalectomy or there is this study I'm leading. I looked into it and got accepted for the study.
One thing to check and that's to see if anyone is doing research for your particular issue. If they think that you would make a good candidate they would be happy to see you. They can't always find enough local folks to help fill their needs. I'm about 180 miles from Rochester Mayo so it's no biggie to travel [except for some winter days]. I've participated in a few studies over the last 6-7 years.
At the end of my first visit the doc said I had 3 choices. Do nothing, have the adrenalectomy or there is this study I'm leading. I looked into it and got accepted for the study.
Maybe that doc could refer to a couple neurologists who might be interested in your case. Or someone with the medical school might be interested if it was suitable for a teaching case.
I remember being helped at the Marquette dental school, because my situation was suitable as a teaching case.
Welcome @berthamincox, I'm just a patient like yourself. You ask a great question but I think the answer is pretty complex. The first part diagnosing whether or not you have neuropathy seems fairly easy with the physical exam, medial history and testing. Determining the cause is more difficult and quite often goes unanswered. I shared my neuropathy journey in another discussion but it sounds similar to how you started - https://connect.mayoclinic.org/comment/310341/.
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@botterd wow, I have read about neuropathy from chemo. My gosh what a thing to go through.
Thank you for the reply and take care best you can.
@cleveland26
Exactly. Each person is different and what works for one may not for another. You won't know until you try it. Some get terrible SEs with the first dose. Maybe titrate up on the PreGabalin starting with 25mg. Make sure that your doc prescribes enough capsules so that you can titrate to an effective but tolerable or titrate back down. I'm on 75mg 3X per day; upon waking, late afternoon and bedtime. I find that if I miss the afternoon dose I don't feel much effect. It got rid of some diabetic neuropathic chest pain and some infernal itching. At 77 YO, I'm on it until my last breath regardless of any effects it may have. The itching would be intolerable should I ever get off.
Best of luck to those who try it.
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1 Reaction@humblyhoping thank you for the kind words. It's pretty bad and I've been told it will take time to resolve, if ever.
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1 ReactionI’m new to the group and I’m hoping that I will be able to see a Neuro Dr at Mayo in phoenix soon. I’ve been fighting Neuro for about 5 years and I would like to know why I’m always told I have peripheral Neuro but none of the dr’s test me to tell me which one. Is this normal procedure?
Welcome @berthamincox, I'm just a patient like yourself. You ask a great question but I think the answer is pretty complex. The first part diagnosing whether or not you have neuropathy seems fairly easy with the physical exam, medial history and testing. Determining the cause is more difficult and quite often goes unanswered. I shared my neuropathy journey in another discussion but it sounds similar to how you started - https://connect.mayoclinic.org/comment/310341/.
Mayo Clinic has more on diagnosing neuropathy here if you haven't already seen it - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067.
You mentioned you are hoping that you will be able to see a neurologist at Mayo in Phoenix soon. Have you scheduled the appointment yet?
@johnbishop
One thing to check and that's to see if anyone is doing research for your particular issue. If they think that you would make a good candidate they would be happy to see you. They can't always find enough local folks to help fill their needs. I'm about 180 miles from Rochester Mayo so it's no biggie to travel [except for some winter days]. I've participated in a few studies over the last 6-7 years.
At the end of my first visit the doc said I had 3 choices. Do nothing, have the adrenalectomy or there is this study I'm leading. I looked into it and got accepted for the study.
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1 Reaction@bajjerfan That's a great idea. I've participated in a few heart studies at Rochester Mayo but not one for neuropathy related conditions.
@johnbishop
Maybe that doc could refer to a couple neurologists who might be interested in your case. Or someone with the medical school might be interested if it was suitable for a teaching case.
I remember being helped at the Marquette dental school, because my situation was suitable as a teaching case.
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2 Reactions@johnbishop I’m doing a conference call with Mayo tomorrow morning. Thk u
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