How do you cope with multiple chronic problems?

Anyone around here with CPTP of any type CPT II or CPT2, etc, Carnitine Palmitoyl Transferase? I just learn I have that as well. DARN! And I thought my world of discoveries was about finished. Great article in Wikipedia, though. Anyway, it is Familial, then triggered by such as heavy labor, fasting, high or low temperature environments, etc. Been there, done them all. Worked in environments from -50 F to +150 F in industries. Done heavy labor without eating or sleeping for 3 days, including 2 football practice sessions and a game and throwing about ten truckloads of hay bales. Ran half-marathons. Backpacked up to 15 days across Idaho with 70 pound packs because smaller people could not carry their own loads of food, etc.. Put this with my diabetes 2, various cancers, and Myeloma/ Gelsolin, and I can see how the CPT2 got started. oldkarl

How was this diagnosed? From what I can find it is exceedingly rare, I'm surprised you found a doctor who recognizes it. What specialty are they in?
Sue

@sueinmn Hi, Sue, Actually, I I went back six years and found it mentioned in some notes I took when I was at Mayo-Phoenix for diagnostic workup. That entire process, I have thought until now, was a total waste because Mayo wanted me to spend another $10,000 to have the Whole Genome sequencing done. But there was a young lady doctor, endo, I believe, who mentioned that she thought CPT of some sort might reveal itself eventually. Then, in the past two years I have had genetic work ups by Ambry Genetics, Sequencing.com, and a few other labs. I saw this mentioned on multiple of these reports, so I have been checking. Anyway, I saw this named on one of the ER tv shows, and thought it sounded familiar, so I went back to check my records. The life patterns fit, the lab reports fit the symptoms and signs. I do not know yet how rare it is, but I have an entire page of CPT variants on my Exome. Now, just in case you wonder, at these moments I do not rely much on non-lab reports. However , they can offer background support for understanding I go back and look at Smart Charts, etc. , genetic lab reports and face-to-face. If there are only one or two notations, I usually ignore them. But 40 or 50 variants are hard to ignore, especially if they are spread over 6-8 years and 8 or ten labs, including being marked as pathogenic or perhaps Patho, MGUS, or similar. And if there are similar notations of serious issues against my body or future generations. In the case of the young doctor at Mayo, it even sounded in her voice that it might be a problem. Thanks, Doc. oldkarl

I have made a note of some of the things you mention and will check them out. I’ve been looking into gut probiotics. I found one by Bonafide.com. Just starting this journey so information is helpful! Although I’ve had IBS for years I’ve managed it. I go through bouts of both extremes. Twisted colon has brought on a new concern and I don’t want to rely on softeners. I’ve also been reading about diet and drink plenty of water. Thanks for sharing what you’re doing, I appreciate it!

Have you seen this discussion? https://rarediseases.info.nih.gov/diseases/1121/carnitine-palmitoyltransferase-2-deficiency/diagnosis

What do you plan for your next step - or have you decided to just live with the condition?
Sue

@sueinmn mostly I will just live with it. I cannot eat more carbohydrates.

@sueinmn Just a little more. the literature says that eating more carbs is the best treatment for CPT2 and other CPT*. But whenever i do, my glucose thinks its my version of a moon shot. oldkarl

I take pills. They won't give me medicine for pain because of the people who become addicted. But I'm like I need it just to stand up and do regular stuff. But I don't complain..I take the inflammation stuff..it's called Naproxen...but sometimes I take up to twelve pills a day just to be functional but it's all I have

Dear Ashby,
I also have to deal with many pain/inflammation/autoimmune/neurological plus conditions. I counted at least seven at least
It is extremely hard. And although family and friends try hard to support us in the end, no one can really understand what we go through. It is very frustrating but I got to the conclusion that they are trying their best, even our doctors are trying their best. I am noted for being “a complicated patient” or told with you, everything is possible ( words by my rheumatologist ) meaning symptoms,
Answering your question, I don’t know how to cope, I just keep going. I have a pain pump for TN but it doesn’t help the rest of my pains because it lands directly in my brain, taking all sorts of meds for other conditions and lately I decided to fake that I am feeling better. The reason is because I had started feeling I was a bit of a bother, so I take double meds ( when I am with family grandkids etc trying to walk a bit more) not sure how long I will be able to do that but it’s working for a few days although it requires a huge effort on my part
What I am now interseted on is manage of IBSC
I take steroids daily, Humira, and two meds for the TN besides the pump but my constipation has gotten worst and now I am on Linzess and I still need Miralax and sometimes laxatives
I had anorectal manography at the Mayo Ckinic 12 years ago that showed a neurogenic abnormality and I did biofeedback and I practice it but it is no longer helpful
I am so disturbed I woukd even accept surgery to help me with that and the severe abdominal pain and severe distension
Any suggestion/advise will be very appreciated
I am 73 and on Medicare so I cannot longer afford to see doctors at the Mayo Clinic although I live in Houston with the best medical center possible
Hang in there dear friends, I also found meditation a way to at least relax and listen to kind words
The App Insight Timer is great and it is free
Wishing you more days with less of whatever. I welcome anything that feels better on a particular day ❤️

Have you looked into a hypoglycemic balancing diet? https://www.verywellhealth.com/hypoglycemia-diet-5180109
My husband is diabetic, and when ill or in pain his blood sugars go out of control. Cinnamon helps rebalance. I wonder if cinnamon plus carbs could work for you?
Sue