PN and Tamsulosin (Flomax)

Thanks so much John- I’ve never seen this before and it’s very interesting! I’ve been through a lot of PT and take a regular Tone & Balance class here, and one thing I’ve learned over my 7 years (or think I have) with this is that I have to know my body limits as it now takes me much longer to recover from over exertion, sometimes to the the tune of days or weeks. That’s hard for me, as I used to run long distance races and would expect to be sore for a day or two afterward, but now, if a therapist asks me to see how many times I can repeat sitting in a chair then standing in one minute, I know to tell them that it’s not an event I qualify for, as the damage will stay a long time, and it’s a better exercise for me to slowly stretch and strengthen things. I’m reminded of that today because I am having PT with a new therapist, in advance of foot surgery in 2 weeks (I’ve decided to move forward with the hammertoes correction…) Last week I tried to impress my new therapist by doing what he asked with the sitting & standing, and now we’ve stopped the therapy as we realize I’ve injured the knees I’ll need to walk with while in my surgical shoe, so we’re letting me rest & repair now until surgery.
On the genetic testing… since I just moved here, my new PCP just recommended that to me recently and made a referral to the genetics group. I have an appointment in January. It will be interesting if there are any findings like your article suggests is rarely found. Thanks again for sharing and making us more informed!!

If you want some easy to understand videos on the different neuropathies, checkout Dr. Matthew B. Jensen’s YouTube channel
https://youtube.com/@MatthewBJensen

Interesting conversation to enjoy between you, @ray666 and @johnbishop . I too cannot handle even the teeniest overuse of my muscles. I also have learned to maintain a completely even keel with my emotions. Example: last week I had an early morning appointment (8:30, which now counts as early for me, as I have to treat my nervous system delicately for the first few hours of the day). It was for OT for vestibular therapy for this awful dizziness. I was starting to feel stressed when I got there, no shower ( too much morning activity), worried about having to drive dizzy (requires wearing sunglasses and keeping one eye closed), possibly having diarrhea there (totally unpredictable from autonomic neuropathy). When I learned that it was a PT appointment, not OT, which I can’t have because I already have PT for pain - well, I had a surge of anger and frustration. I argued with the receptionist. I had her repeat herself. I had her call the clinic manager. I perched on the edge of her desk because I needed to sit down. I held up the line of other patients. I tried not to burst out crying.
I felt myself sinking into a downward spiral, so I did what I have always enjoyed. After taking a Percocet and a Baclofen, I got out my mower and rake, and worked outside in the sun for an hour and a half.
Well, I had what I call a “ death night”, woke the next morning very groggy, dizzy and just sick. Ended up canceling all appointments as I struggled, suffered, and slept all day. Saturday was ruined as well. I went into an emotional tailspin.
In the midst of this, I messaged my neurologist, asking for a prescription to calm my nerves in these conditions, in essence create a zombie state, keep my nervous system from flaring. He agreed.
Add another drug to my huge list.
Anyway, just wanted to share my experience of slipping out of my safety zone and trying to be the person I used to be, by working outside in the sunshine!

Interesting conversation to enjoy between you, @ray666 and @johnbishop . I too cannot handle even the teeniest overuse of my muscles. I also have learned to maintain a completely even keel with my emotions. Example: last week I had an early morning appointment (8:30, which now counts as early for me, as I have to treat my nervous system delicately for the first few hours of the day). It was for OT for vestibular therapy for this awful dizziness. I was starting to feel stressed when I got there, no shower ( too much morning activity), worried about having to drive dizzy (requires wearing sunglasses and keeping one eye closed), possibly having diarrhea there (totally unpredictable from autonomic neuropathy). When I learned that it was a PT appointment, not OT, which I can’t have because I already have PT for pain - well, I had a surge of anger and frustration. I argued with the receptionist. I had her repeat herself. I had her call the clinic manager. I perched on the edge of her desk because I needed to sit down. I held up the line of other patients. I tried not to burst out crying.
I felt myself sinking into a downward spiral, so I did what I have always enjoyed. After taking a Percocet and a Baclofen, I got out my mower and rake, and worked outside in the sun for an hour and a half.
Well, I had what I call a “ death night”, woke the next morning very groggy, dizzy and just sick. Ended up canceling all appointments as I struggled, suffered, and slept all day. Saturday was ruined as well. I went into an emotional tailspin.
In the midst of this, I messaged my neurologist, asking for a prescription to calm my nerves in these conditions, in essence create a zombie state, keep my nervous system from flaring. He agreed.
Add another drug to my huge list.
Anyway, just wanted to share my experience of slipping out of my safety zone and trying to be the person I used to be, by working outside in the sunshine!

Well - after all I wrote, I STILL got my doctor's final Label for my affliction wrong - I forgot the word IDIOPATHIC! So my "final" diagnosis from him was actually "Severe IDIOPATHIC Axonal Sensorimotor Peripheral Neuropathy" (I knew when I wrote it before it seemed to be missing some syllables. This is exactly why it helps to refer to our written notes. Good luck tomorrow!!

Well - after all I wrote, I STILL got my doctor's final Label for my affliction wrong - I forgot the word IDIOPATHIC! So my "final" diagnosis from him was actually "Severe IDIOPATHIC Axonal Sensorimotor Peripheral Neuropathy" (I knew when I wrote it before it seemed to be missing some syllables. This is exactly why it helps to refer to our written notes. Good luck tomorrow!!

@ray666 - Ray, - I'd use AISPN - I think the axonal is important and you have the identical dx that Mayo gave to me. I've had about 4 years to digest what I was told, and I know this is something you may have suspected but when you hear it confirmed, it's different. Like others with PN, no cure. But you can live with this and as you have said on this forum, be prepared to make adjustments. You will make adjustments and continue to meet our friends at the coffee shop. Keep moving, stay positive and learn what you can about your diagnosis. Knowledge how to live with this is important. Remember, there are a lot of things out there a lot worse. This is just another bump in the road. Ed

Hello, all!

I'm the fellow who started this thread about PN and Tamsulosin. At the time, I'd only just been given the script by my PCP; I hadn't yet received the drug. I received the Tamsulosin six days ago and began the following day taking one cap per day, so I've now been taking Tamsulosin for four days. Why not five days? Well, that's why I'm posting again. I know that among Tamsulosin's side effects were possible dizziness and lightheadedness. My PCP had assured me that the odds of my being one of those vulnerable to the side effects were slim. But here's what happened. For three of the four days I had far more difficulty with my balance, more than what I consider my "normal" difficulty because of my PN. That made me suspicious. Last evening for the first time since receiving the Tamsulosin, I skipped the evening dose, and today for the first time since I began feeling the added wobbliness, I feel "normal" (in other words, I feel my by-now familiar––and manageable––PN wobbliness). I know my PCP told me it might take several days to get used to Tamsulosin. But now I'm wondering if there might be some substitute medication. I've left a message for my PCP, but I haven't heard back yet.

Ray (@ray666)