Autoimmune and Type 2 Diabetes
Hello everyone,
I was diagnosed with type 2 diabetes about 3 years ago. I started metformin and ozempic but they made me really sick so I stopped taking meds and basically stopped taking care of myself. I went into DKA two years ago this December (my endo was kinda shocked I went into DKA). I got out of ICU on insulin and within a couple of months my A1C was down below 7 and manageable.
My doctor weaned me off insulin and had me on glipizide and then started me on mounjaro. I became really ill again. So my Dr took me off mounjaro and restarted insulin. I'm not here to dispute mounjaro but it was horrible for me. My stomach became sick last July with vomiting, stomach pain etc. I was in and out of the ER, had a colonoscopy and upper endoscopy and my GI found some stomach inflammation but dismissed it. I began to see many specialists but nobody could tell me why I was so sick. My BS numbers have been constantly high. I finally had a stomach test and my stomach was emptying too fast. But again, my GI dismissed it. My back pain, stomach, fatigue etc was going undiagnosed. My chest would hurt. I was told heart was fine. Finally a new PCP asked if I was ever checked for autoimmune. I wasn't. Ran labs and my numbers are off the chart. Told I have RA, need to get diabetes under control. (Well, duh!) Apparently I have lots of inflammation in my body. On chemo-like pills once a week.
My legs began hurting this past December. Just ACHING, heavy and weak. Feeling like I'm going to fall. Hurting so bad I cry. All the time. So frustrated. I saw a neurologist and instantly he diagnosed everything to be diabetes. Does that happen to yall? As soon as a Dr sees you have diabetes, that's the answer for everything!? I know drs are not perfect but good grief....this over nine months of pain.
So this week I had a nerve test done and he checked my muscles. He said my muscles are fine. Normal. He says I have neuropathy in my legs. For some reason, my gut says he is wrong. I can't help it. Maybe I am in denial? My muscles are not normal. They hurt. The meds I take aren't working yet. My rheumatalogist is even doubting RA because my joints don't hurt. It's my muscles. My labs are bad. Something is going on. Yes type 2 but what else who knows...
I just get so upset that "everything" is supposedly diabetes. Am I crazy?
I'm tired. Depressed. I lost my job because I was so sick and can barely walk. I use a cane. I'm just so tired of all of this. I needed to vent to someone other than family who don't understand how I feel.
I also wear the dexcom which is a love/hate relationship. Im glad I dont have to poke myself constantly but the thing chimes all the day and night about my numbers. I'm trying to work on getting back under control. But I also have thyroid, pcos etc too.
No wonder you have been frustrated and depressed,
. You are contending with so much at once. I think you will find many in this community who share your expereince with doctors blaming everything on diabetes. The same is true for people with other chronic illnesses. Once doctors have a diagnosis, they tend to associate any new symptoms with that illness as do patients. It's good you are looking outside diabetes and RA for answers. You really do need to advocate for yourself if you want the best possible care.
Here is an article from our sister community for people with RA about the diagnostic process: https://rheumatoidarthritis.net/diagnosis. The article might give you some clues as to whether the diagnosis is accurate. It can take up to four months for RA medications to kick in, but finding the right medication can be hit-and-miss. What is effective for someone else might not work for you. If you do have RA, you might have to try other medications until you find one that helps as frustrating as that it. Here is an article about RA medications: https://rheumatoidarthritis.net/treatment/drugs-and-prescription-medications-for-ra. If you are really uncertain whether you have RA, you might want to get a second opinion. It might give you peace of mind.
Neuropathy in the legs is common for people with diabetes, but it's the heaviness that would make me question the diagnosis. That is more common for people with circulatory issues, such as Peripheral Arterial Disease (PAD). It could also be a symptom of RA, an electrolyte imbalance, all kinds of things. I am sure you are tired of seeing doctors, but I hope you keep pushing for answers. Remember that neurology is a huge field with lots of specialities and many unexplored frontiers. The best neurologist can still be unfamiliar with certain conditions. So, don't feel awkward about getting a second opinion from a neurologist as well. We have another sister community for people with rare diseases. I moderated there for a while and was astounded by how long it took some people to get answers. They often went from doctor to doctor for decades before hitting on the right diagnosis. It hate to flood you with too many links, but I think you might appreciate an article from that community about second opinions and why they are important: https://raredisease.net/clinical/doctor-second-opinion.
I hope this helps and that you get the treatment and relief you need and deseerve. Best wishes. - Lori (Team Member)
