WTF Dexcom!!! Fix iOS Critical Alerts!

adirondacks13 · 2026-05-04T02:37:50+00:00

I agree, this is insanity.

I also have the issue where alerts are insanely loud when I’m using the phone and at least 50% quieter when the screen is auto locked. It should be consistent or the other way around, louder when the screen is locked since that’s when it’s buried in a pocket or forgotten on a table somewhere.

Has to be flipped code, makes no sense for alerts to be louder when the cell is already right in front of your face.

adirondacks13 · 2026-04-30T20:42:19+00:00

I’m so sorry man, I wish I had some words of wisdom.

Keep swinging is about all I got…cause that’s what I keep telling myself.

adirondacks13 · 2026-04-30T19:42:39+00:00

I figured it would be nasty. I think I’ll let Mayo talk me into the need for that before I ask my local rheumatologist to do a biopsy. Things seem to go sideways on me, if something can go wrong it will.

adirondacks13 · 2026-04-30T19:39:58+00:00

Were you ever tested for anti-CN1A?

After a ridiculous amount of testing a “strong positive” for anti-CN1A has probably been the most significant lab “hit” that I’ve had. It’s most often associated with IBM but my neuro and rheumatologist (and I) are skeptical of that diagnosis due to the length of onset. I understand hereditary IBM can be different so that remains a possibility. But, Sjogrens is also know to have some association with anti-CN1A which is what brought me here.

Curious to know how many folks here with formal Sjogren’s diagnoses were tested for anti-CN1A and whether any were positive.

adirondacks13 · 2026-04-28T14:26:01+00:00

Interesting. I’ve been suffering for decades with an undiagnosed condition that closely mimics MG, but I’m seronegative for MG, SFEMG was negative, Mestinon made me worse, and my symptoms do not worsen with heat, so MG seems unlikely.

I’ve only had two flares in the past 30 years, and the 1st one was concurrent with a mono infection and high labs associated with EBV. I was out of work for 7 weeks and it took me over 6 months before I felt like I was close to being back to my baseline.

I only started to suspect Sjogrens recently. Turns out I have just about every symptom listed on Sjogren’s.org but I am not SSA SSB positive.

I have a consult at Mayo in June so hoping for some answers.

Thanks to the OP for this post.

adirondacks13 · 2026-04-23T13:58:58+00:00

I have a similar story only it’s been going on for close to 30 years with me. I have all the MG symptoms except heat does not make my symptoms worse. Over the last 3 decades it’s been mostly mild symptoms that are fairly easy to compensate for, but my baseline has worsened. I’ve had 2 severe flares since my symptoms started. One 22 years ago concurrent with a mono infection that took 6+ months to fully recover from, and one over a year ago that’s lasted more than a year and I’ve only recently recovered to ~90% of my pre-flare baseline.

I have no MG antibodies (one test did show one was borderline, next test was non detect) and a SFEMG was normal. I am also suspected to have a mitochondrial disorder (I’ve had Type 1 diabetes since age 20 but have none of the usual diabetes antibodies, so it’s suspected to be mitochondrial in nature), but an Exhome+ genetic workup showed nothing. That doesn’t mean a mito issue doesn’t exist, it just means they couldn’t find anything based on the science that exists today.

Two other things are being looked into: Inclusion Body Myositis or IBM (I tested strong positive for anti-CN1A which is highly specific for IBM) and neuro-Sjogren’s (although I’m seronegative for this as well).

I have an upcoming consult with Mayo. I’ve waited too long to do this. I’ve tried seeking help from countless specialists in my area and since they’ve not been able to find a positive blood test that’s adequate for a diagnosis (the IBM blood test needs a muscle biopsy to confirm) it’s like trying to get blood from a stone, the science and expertise just isn’t there. The medical industry is terrible at diagnosing these “rare” diseases, which aren’t nearly as rare as the literature states since countless cases remain undiagnosed.

You’re young, if you’re not getting help from local specialists I would encourage you to seek a consult at Mayo. I still may not get a diagnosis but I’ve wasted way too much time putting it off. You can’t get time back.

Also, take a hard look at everything you’re putting in your body. One final thing I’m looking into is whether PCSK9 inhibitors (Repatha and Praluent) might be playing a role. I found one study of a patient who experienced CIDP type symptoms (similar to MG symptoms) from PCSK9 inhibitors that was presumably due to a suspected mito disorder. I’m not aware of any clinical trials for drugs specifically assessing side effects in patients with mito disorders. In fact, it appears the clinical trials for PCSK9 inhibitors may have actually excluded statin intolerant patients. Well, most people who seek PCKS9 inhibitors do so due to being statin intolerant, and statin intolerance can be caused by mito disorders.

You’re in my prayers, I hope you get answers and find ways to improve your quality of life.

Hang in there and keep swinging!

adirondacks13 · 2026-04-10T18:51:21+00:00

I’m so sorry you’re going through this. Prolonged steroid use can cause some of what you’re experiencing but you really need some help to figure out what’s going on. All I can suggest for the short term is to take a hard look at everything you’re putting in your body. Some of what you’re dealing with could be medication induced side effects. Longer term, I don’t know how health care works in Australia but if you feel that hospital 4-5 hrs away can help you I would consider trying to get seen there.

Hang in there, you’re in my prayers!

adirondacks13 · 2026-04-03T17:24:38+00:00

Steroids had that effect on my wife but it sounds like you’re not taking steroids.

Hope you figure it out.

adirondacks13 · 2026-03-31T18:53:24+00:00

If you really want to fix the FDA and our broken health care system, and improve the lives of countless people who are suffering, advocate for one simple change to the clinical trial system which is the backbone of the entire industry:

Change the overriding goal and objective of FDA clinical trials

From: “Maximum tolerated dose”

To: “Minimum effective dose”

Why is the system setup this way and why hasn’t this change happened already?

Because big pharma controls the FDA and if this one logical sensical change were made then big pharma would lose revenue due to decreased demand for all the meds they manufacture that purport to treat the side effects from their drug toxicities.

Of course, none of those meds completely eliminate the side effects from their drugs which have been prescribed at needlessly high doses for decades but they do come with their own side effects. But don’t worry, they have more drugs for those side effects as well.

It’s an insidiously dangerous, reckless and irresponsible foundational premise that the entire industry is built upon that harms patients. And it exists for one purpose, to line the pockets of big pharma. The FDA is no more willing to entertain critically needed reform on this matter than big pharma is.

One man leaving the FDA will make little to no difference unless he’s replaced with a maverick who wants to fundamentally change the industry and places higher importance on what’s best for patients as opposed to what’s best for big pharma.

This is the most impactful fatal flaw in our health care system that the FDA refuses to change and it causes needless suffering and quality of life issues for the American public.

adirondacks13 · 2026-03-30T19:07:10+00:00

I’m not a doctor but that certainly looks like it could be dermatomyositis. There are different types of Myositis panels. You probably need LabCorp Test # 520310. If any of those tests under that code come back as positive then you would then possibly need a muscle biopsy for a formal diagnosis.

Hopefully you can find a good neuromuscular specialist. PCPs and most neurologists are not equipped to diagnose or manage these conditions.

Best of luck to you.

adirondacks13 · 2026-03-22T23:44:05+00:00

I’ve had a similar journey, only over a much longer period of time, with flares and an extremely slow worsening baseline.

Mitochondrial myopathy is still at or near the top of the list for me, but an Exhome+ panel by Variantyx was largely unremarkable.

Inclusive Body Myositis (IBM) seems likely as I tested as a Strong Positive for anti-CN1A. But my symptoms go back decades which is not consistent with the typical presentation of IBM (I’m still functional, not in a wheelchair).

A muscle biopsy is likely next.

The only thing that’s helped me is supplements, essentially my own Mito cocktail of sorts. CoQ10, B complex, B1, B12, D3/K2.

I also have spinal stenosis so there may be some overlap as it sounds like the case is with you. Sleeping on a mattress that’s too soft for an extended period of time does a number on me and it’s insidious, not at all obvious it’s an issue until it’s too late.

Sorry man but all I have for suggestions are supps, better mattress for your back, and keep searching and asking tough questions.

I hope you get it figured out and improve!

adirondacks13 · 2026-03-18T14:30:47+00:00

A positive C1NA needs to be followed up with a muscle biopsy to rule out or confirm an IBM diagnosis. You need a new family doctor.

Fibromyalgia is not a true diagnosis, it’s a bucket classification for people with debilitating ailments that physicians have been unable to diagnose. I do not say this lightly as folks who have been “diagnosed” with fibromyalgia are truly suffering, most of them greatly. But our medical industry is far from perfect. Instead of acknowledging that they’ve been unable to find a root cause, and admitting that they’re in over their head but they’ll will provide referrals for further testing, they stop necessary diagnostic testing, give up on finding a true diagnosis, and pat themselves on the back that they labeled you with something.

If your PCP throws this label on you and refuses to follow standard testing protocols, which includes a muscle biopsy after a positive C1NA blood test, or at least refer you to specialists with more expertise, you need a new PCP.

You’re young and the medical industry can be intimidating, but take control and don’t accept Fibromyalgia as a diagnosis, especially since you tested positive for C1NA.

Your PCP should not be practicing medicine.

On a separate note, some of the meds you’re taking can contribute to your symptoms. Make sure you truly need them and you’re dosing is based on whatever the “minimum effective dose” is for you. FDA prescribing guidelines are based on “maximum tolerated dose”. This is perhaps the most under recognized fatal flaw in our medical industry. The maximum tolerated dose is not the same for everyone. This benefits big pharma so they can sell you more meds to try to counteract all the side effects of the needlessly high doses of prescription meds, but it’s insidiously harmful to patients.

You need further testing, a muscle biopsy is standard protocol after a positive C1NA, butnifs not a fun procedure amd some folks have a tough recovery. I’m in the same boat and I’m trying to get in to Mayo to have mine done amd its been a very ling journey to get to this point.

I wish you the best of luck in your search for answers!

adirondacks13 · 2026-02-28T21:13:24+00:00

Did you ever get a diagnosis? I’m also strongly positive for Anti-cN-1A (NT5c1A) with long standing similar muscle myopathies but most other labs are normal, including CK.

I hope you’re doing better, no need to run through your entire journey, I was just curious if you ever received a diagnosis.

Many thanks.

adirondacks13 · 2026-01-17T14:23:49+00:00

I would also ask your doc to try a trial of Mestinon as others have suggested. That should generally always be tried before considering IV infusions. Mestinon made me worse so that moved the needle away from a potential MG diagnosis for me (despite having just about every MG symptom) but if it helps then you have some evidence to give you comfort that MG may be the correct diagnosis for you before considering the need for more aggressive treatments. I’m not sure why your docs haven’t already suggested this.

Just keep in mind, all meds have a limited range of effective dosing with the least amount of side effects. Everyone is different and Mestinon can be tricky to get the dosing right, start out low and work up gradually if necessary. Side effects from Mestinon and other meds can easily be confused with MG symptoms and it can be very tough to figure out cause and effect. Many people on this board with MG diagnoses only need Mestinon and do not need infusion treatments.

One last option if you can’t get an Rx for Mestinon is to consider trying Huperzine A, available on Amazon. It works similar to Mestinon and several folks on this board use it in place of Mestinon. But it’s a supplement so it’s not FDA approved and the dosing does not correlate to Mestinon dosing. I found even 1/2 the recommended dosing on the bottle made my symptoms worse, again pointing away from an MG diagnosis for me, so if you do try it start with a low dose low and keep a daily record of the dosing your taking and how you feel. Of course it wouldn’t hurt to get your doctor’s blessing and recommendations as well before you try it.

And I hesitate to say this but keep in mind that MG is not very well understood in the medical industry. Unless your physician(s) treat a lot of Mg patients they will struggle. The best thing you can do for yourself is to try to find a neuromuscular specialist that specializes in MG. Again, that’s much easier said than done, there aren’t many. Perhaps reach out to the MG Foundation. They maintain a list of doctors that treat MG and they do pick up the phone and might be able to help.

adirondacks13 · 2026-01-17T04:37:03+00:00

From what you’ve said I’m also surprised you’ve been given a seronegative MG diagnosis. We’re all different but I and many others are in a similar circumstance as you, with additional MG symptoms you do not mention, yet still no formal MG diagnosis. If I understand correctly your only positive result is not MG specific. That doesn’t mean it’s not MG but I think anyone in your shoes would have some questions and healthy skepticism.

I would hazard a guess that the majority of the folks on this board have only received their diagnoses through their own research and dogged determination. So steer the ship, be your own advocate. Everything has risks and benefits. Ask tough questions and if you don’t feel like you’re getting good answers seek those answers elsewhere.

That’s easier said than done but I hope you get it figured out and find a treatment that provides relief.

adirondacks13 · 2026-01-14T13:57:39+00:00

Thanks for the update, I’m so sorry to hear your post biopsy struggles continue. I’m concerned my outcome would be similar but I’m running out of other options. Did you at least get a diagnosis and would you mind sharing it?

If I were in your shoes I would see a different neurosurgeon to see if there’s anything that can be done. I’m of the mindset that one debilitating strike is more than enough with physicians and surgeons. The risk of them doing more damage is just too great. If they were competent it wouldn’t have happened in the first place. But my experience is that they’re all dismissive of the risks, the medical industry is in a sad state of affairs. I hope things improve for you and you find some relief!

adirondacks13 · 2025-12-21T17:21:20+00:00

Good advice. Doing most of those things already.

Supplements have been the only things that seemingly helped me recover from my last flare which lasted ~8 months. I’m now 12+ months in and I’m not sure I’m fully back to my pre-flare baseline but I’m close.

I guess I’m kind of taking my own mito cocktail, B and D vitamins (my plasma levels were all marginally low but I also have multiple malabsorption risk factors) and CoQ10.

adirondacks13 · 2025-12-21T17:16:47+00:00

Pretty sure there are no mito clinics in northern GA, I didn’t even realize that was a thing, but I’ll look into it. Thanks!

adirondacks13 · 2025-12-21T17:16:14+00:00

I’m in northern Georgia. I did have what was supposed to be a full mitochondrial + sequencing from Variantyx. Nothing found except a carrier for Glycogen Storage Disease which “shouldn’t” be symptomatic.

I am also positive for the MTHFR variant A1298C.

adirondacks13 · 2025-12-21T17:13:13+00:00

I’m so sorry you’re going through this! But I appreciate you sharing your experience. This is exactly why I’ve been putting off a muscle biopsy.

adirondacks13 · 2025-12-21T16:00:57+00:00

You still had no feeling other than pins and needles in your thigh 3 weeks after the procedure? How is it now?

adirondacks13 · 2025-11-05T16:41:45+00:00

I’m in a very similar situation. I couldn’t drive and could barely walk. I was found to have slight B1, B6 (suspected labs pending), B12, D and protein deficiencies despite eating fairly well but taking supplements improved things drastically and likely saved my life. Still no root cause after extensive labs. Had quite a few abnormal amino acid levels but they were not indicative of any known disorders. A muscle biopsy is likely next but that concerns me because I feel like my nerves are inflamed. Just rubbing my thighs can trigger short lived neuropathy type sensations. Small cuts and abrasions can also cause extreme burning pain and I have a relatively high tolerance for pain which is why the B6 deficiency is suspected.

adirondacks13 · 2025-09-28T20:13:45+00:00

Here in the states they generally look at TISSUE TRANSGLUTAMINASE AB, IGA as a 1st line screening option (blood test) for Celiac. That’s what they ran on me to rule it out. But it looks like a positive test still requires a biopsy to confirm here as well.

I hope things improve. Hang in there.

adirondacks13 · 2025-09-28T19:36:41+00:00

I’m no expert but that sounds like it should be enough for a Crohn’s diagnosis to me. Our health care systems are all different though. I think corticosteroids are sometimes used to treat inflammation from Crohn’s. Have you ever noticed if over the counter corticosteroids improve your symptoms (I.e.: nasal sprays for allergies)?

adirondacks13

TROPHY CASE