I meet with my doctor next week and will bring up increased neuropathy, pain, balance issues and new areas of numbness. I suspect she may tell me this is to be expected as I get older with PA. Is it? Or is it an indication that I am not SI frequently enough? For 20 years I have been sticking to the schedule set down by my neurologist at the time, which is every two weeks (and being thankful it was that frequent, instead of the US standard of once a month). Still, I have noticed slow declining all along. Thanks to the help on this website, I was able to find a source for additional doses in Canada, so I could SI more often. But am I being unrealistic when I think that these continued declines should not be happening in my senior citizen years? I am not noticing a similar degree of declines in other ways.
Is it Usual for Neuropathy and Pain t... - Pernicious Anaemi...
Is it Usual for Neuropathy and Pain to Get Worse with Age?
I'm interested in replies as well. I've been doing shots twice a week for the last 2 years, but recently reduced to once a week. I've had the flu and covid-19 during the past year, also,with increased neurological issues. I'm having trouble differentiating between all the events and my dosing. I'm also 67. So if anyone has insight for either of us, it would be so helpful.
Linda730.... I am sorry you have had such a rough year. It is a comfort to know I am not alone in having trouble sorting out the reason symptoms are getting worse. There are other things going on with my health, too.. I though they had been resolved, but, like you, I wonder.
I wrote this response to another member who was struggling with similar issues:
Have you had other nutrient levels checked? What do you take for supplements? Since being diagnosed with PA, I learned I had a host of nutrient deficiencies alongside B12 due to severe GI malabsorption. I also have beriberi disease, which is caused by a deficiency in B1 (thiamine). Beriberi causes nerve damage and can also lead to neuropathy. Many of the symptoms are similar to B12 deficiency.
When we are deficient in one, we are often deficient in more. I responded well initially to B12 injections, but some of my symptoms did not resolve, and I suspected there was something being missed. I continued to experience peripheral neuropathy, weakness, and a host of other symptoms. For me, B1, B2, B3, B6, B7, and B9 were also deficient.
If a person is B1 or B2 deficient, B3, B6, B9, B12, and iron will also not be properly absorbed or assimilated. I strongly suggest you ask for a test called TDP with liquid chromatography (also called whole blood thiamine) and Riboflavin with liquid chromatography (also called whole blood riboflavin) to assess how the body is using B1 and B2. These are superior to standard blood level labs. Plasma levels of nutrients can be normal, but one can still have a functional deficiency.
Another excellent lab that is more commonly ordered by a functional medicine doctor or naturopath is called NutrEval by Genova Labs. This looks at many different nutrient levels in the body and can provide good information about what needs to be supplemented.
If you can't get any of these labs completed, trialing thiamine is safe, and if you respond well over the course of time with a lessening of your symptoms, it's likely indicative of a deficiency. It's important with thiamine to start with a low dose and move up gradually and to also take equal amounts of B2 along with magnesium, as these nutrients work closely together in many processes in the body. Some great resources for learning more about thiamine deficiency and treatment are Elliot Overton YouTube videos, the work of Dr. Derrick Lonsdale, Dr. Chandler Marrs, and Dr. Constantini. I wish you the best in finding answers and healing
Thank you for this information about other corollary deficiencies. I am making notes of the tests you suggest and will ask about them. Also, you mentioned NutrEval being given by a naturopath. The idea of consulting a naturopath is new to me, but something I will look into.
A NutrEval is typically ordered by functional medicine doctors and naturopathic doctors. I had mine ordered by a functional medicine doctor. He is a doctor of internal medicine who decided he wasn't able to help patients in the 15 minute time slots typically allotted in allopathic medicine, so he attended the Institute of Functional Medicine. This is a specialty that came out of Cleveland Clinic. They saw that a percentage of their patients didn't respond to typical treatments and developed "functional medicine," which focuses more on in-depth patient histories and nutrition.
Before consulting a naturopath, read this blog by one.
Aha... this is very interesting information! I'm glad you took the time to mention it to me.
I'm not keen on naturopaths. I once signed up for an online course. The last few modules were how to extract as much cash as possible.
I just read the article, too. My problem, anyway, is that I'm easily confused these days and can't handle much complexity anymore. If I'm not absorbing well, I guess I'm just stuck unless someone near me is able to figure it out, which isn't likely. I used to be the one everyone came to for advice. 
This must feel so stressful. Is it possible for you to give yourself permission not to try to understand a lot of information or make decisions for a few months? There has been quite an assault on your health, and your brain may need a chance to rest, too. I can get overwhelmed so easily when my health is not good, too. It's miserable. Many times I do better if I can just get myself to back off of my own expectations. You have my sympathy!
One of the blessings of having a bad memory/brain fog is that you forget to worry about something after a few days It will pop up off and on, but mostly I just deal with what's right in front of me, or inside me, at the moment. It can be stressful for all of us, but knowing it's shared makes it a little easier to deal with. Thanks for understanding, lindajanes.
When my neurologist diagnosed me with Idiopathic Axonal Neuropathy he said,
"It shouldn't get any worse than it is now. Well, it will got worse, but at the same rate as any normal person's nerves will get worse as they age. It's just that you're starting from a lower position than normal people".
Over the following 5 years it had, indeed, got worse quite slowly. It's now got bad enough for me to start playing with my meds. At first I tried an extra gabapentin. Wow! I can see why people might use this recreationally. But I don't want to feel like that every night. So I'm now trying amitriptyline along with the gabapentin.
That's just the perspective I needed. Of course, it makes so much sense to see the decline as the combined effect of PA and age. I read what you wrote and had one of those, "Why didn't I think of that?" moments.
Just when you think it can't get worse, guess what?
Vitamin d
Is it needed and safe for my mom to supplement with folate or B12?
