Either way, it sucks.
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Hi
Just mentioned it because she had hand, leg, and neck tremors followed by seizure. You are right… all neuro tests were normal and fortunately her neurologist witnessed one of the episodes…a dr specialist in epilepsy/neurology. I wasn’t sure if any of you diagnostic testing was abnormal which is why I put this comment out there.
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Thank you so much!! I finally got back to this post and found your comment! 
Goodness me… I’m pleased to see posts like this because I feel it’s not given much attention and I fail to understand that!!
I attend the TCOYD (taking care of your diabetes ) conferences here in San Diego and I NEVER see any break out workshops for people with multiple comorbidities even ‘just’ ones related to diabetes!! The TCOYD in 2018… I approached Dr Edelman… the director and Endocronologist with type 1… I asked/suggested the fact that hellooo … lots of people with multiple illnesses let alone those with diabetes and non-related chronic diseases…
So, I asked him about having at least 1 session regarding managing co-morbidites… his response… “wow, that’s impressive that you know the term co-morbidites!!’
Wow!!! Seriously!!! I had thoughts flying through my head like mmm is this because I’m black?? I was truly go smacked!! The more I felt it was race because he didn’t know if I was a medical professional or anything! I’m not … but do doctors really think that non-docs or patients don’t understand or use ‘medical terminology??’
He is seemingly nice and very funny but I was so so offended…
About 1 year ago, I started attending a mixed type 1 and 2 psychoeducational/support group and it was just what I needed!! Two diabetes psychologist ran it … one particularly famous one, Dr Bill Polonsky… Anyways, I brought it up to him regarding the need for such a workshop especially since he’s friends with dr Edelman… he said he’s said that he’s suggested that too…
So long long post of annoyance…
More on my chronic illness stuff next …
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Could be spondyloarthrothapy which is a mix (not necessarily all are manifested but typically several) of ankylosing spondylitis, psoriatic arthritis, enthesitis, irritable bowel diseases, and a few others.
Difference is the mix are all ‘less intense/progressive’ as the individual diseases on there own since the mixture is more like pieces of various diseases
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I’ve read many of these posts. I suppose misery loves company but it’s also nice to know we aren’t alone.
I have multiple chronic illnesses and pain since I was quite young. I was dx at age 5 with juvenile rheumatoid arthritis (now known as juvenile idiopathic arthritis). As the years went by, I collected from there… asthma… multiple allergies, shingles (twice), juvenile fibromyalgia, polycystic ovary syndrome, Cushing’s syndrome, metabolic syndrome, PTSD… all before adulthood… peds Endocronology expected me to get diabetes plus I already had hypoglycemic attacks. I didn’t get diabetes until age 32… type 2 but long story ‘short,’ thanks to a diabetic psychologist… she suspected i actually have type 1. Since I’ve seen many Endocronologists, I found this hard to believe and I didn’t know that type 1 didn’t always have complete pancreas shutdown straight away. I never really responded well to oral diabetes meds and got DKA twice. Anyway… thanks to the psychologist deep suggestion and push, I decided to talk to my endo about it. Because of preexisting autoimmune diseases and being fat, guess type 2 is often assumed with fat people. Turns out I have type 1.5 (aka LADA). I was SHOCKED. I had, right before this dx started using dexcom g6 with positive results and endo Pushed me to use a pump. I was not pleased… but fortunately, I accepted it … Tandem t-slim x2 … and WOW… Ha1c moved from 12 to 7.5 within 1 year!! I’m frequently on steroids, typically short bursts but sometimes IV, steroid injections and pre-meds for my biologic chemo infusion of Rituximab (Rituxan). Obviously steroids = off the wall glucose so the pump profiles help stabilize extremely well.
I’m getting better at carb counting and tightening my control even better and wow, I’m definitely doing better with diabetes. So many people don’t know or acknowledge LADA. I just say it’s a mix of 1 & 2. Because I have a pump, I often get labeled as type 1 even when I didn’t know about my LADA and said I’m type 2… paramedics etc would still report as type 1
Sadly, it feels like having a mix of both generally brings me less judgement about my weight and diabetes.
Although, I had 2 hypo attacks while in urgent care sat-sun for unrelated reasons. When I started going hypo… I showed my CGM reading and the ultrasound tech was like… this test is only 10 min… she also was trying to force me to walk to the bathroom even though the IV was attached to the wheelchair pole. She said the bathroom isn’t far and it wasn’t but heloooo low BG… plus I wear leg braces and they were in the urgent care room so she wasn’t aware however I did tell her. I felt like she was treating me as a far person. To add to it, the nurse I was switched to treated me the same despite dropping BG and I had to ask fit a finger stick to make sure my CGM was accurate as I had paired a new transmitter 2 hours prior and I felt no hypo symptoms. It was low and control IQ predicting further drop.
I had to tell them to give me juice and carbs!! They never informed the doctor which I didn’t know they didn’t! Wish I had. Anyways, the nurse had the nerve to tell me he was tracking down the pain med the doctor saying … “I know you want that…!’ So I said well yeh but I think dropping below 62 is a priority!!!
Felt a definite fat person treatment and it was depressing.
Back to domino of chronic illnesses… I started occasional migraines in adolescence but around 5 years ago, they changed to chronic daily migraines which is finally responsive to Aimovig.
I have dysautonomia (don’t ask about this one bc it’s hard to explain lol)… basically dysfunctional autonomic nervous system (involves blood flow, heart function, gut motility etc). I also have interstitial cystitis and dx wiyh spondyloarthrothapy a few years ago. I have major spine issues including multiple herniated discs, spinal stenosis, radicuapathy, degenerative disc disease, bursitis, enthesitis, laxity in multiple areas, pain pain pain
Nerve pain is one of the worse for me. The arthritis also caused mild lung fibrosis and diabetes also brought mild retinopathy. I have neuropathy from multiple causes including diabetes but also the spine inflammation and post shingle damage.
I’m legally blind in my right eye (strabismus and amblyopia)… have had thst since 4 so no known cause.
I’m dealing with chronic anemia from autoimmune and malabsorption… in urgent care, they found I have electrolyte imbalances with Elevated parathyroid thing. They loaded me with potassium, calcium, magnesium and saline. So grateful for my chest port!
I have other random stuff like chemical sensitive, ADHD, depression and anxiety. Urticaria (idiopathic and chronic), QTCprolongation and yes… more
Managing my pain is one of the most difficult and have severe insomnia.
I sometimes find managing the scut work of arranging transportation, appointments, outpatient procedures and treatments, insurance crud (I qualify for medi-cal(caid) so don’t qualify for covered California… medi/cal was literally killing me and so I had to start buying premium insurance and it’s most of my income. I live with mt mom and she helps me most times with various tasks. She has a traumatic brain injury (TBI) and type 2. I do cognitive work for her and me. The management alone is sometimes more stressful than the diseases !!!
My premium insurance is mostly cooperative. Bx I hsve medi-cal still as secondary, my copays are covered as long as I stay in network. I’m blessed to not be part of a amazing healthcare system, scripps, and my medical team is exceptionally supportive. Many of my diagnosis can’t or caMe together here. I think I would be dead if I was on medi cal alone and I seriously wonder how people with multiple health issues manage. Living in San Diego offered many options snd assistance plus many healthcare systems here but I know many places don’t have this level of access.
It’s definitely not easy being in constant pain and dealing with health/pain politics too!! Getting the drug seeker treatment… forced to be a self advocate and confront people as I did with the urgent care nurse… managing and arranging treatments etc all in between unexpected flares, need for rest or getting random autoimmune fevers. I work hard to minimize treatments and neglect some bc can’t live at the hospital!! I pull lab orders together so I can sync with port access and do lots of self care! Thankful for psychotherapy too lol
Covid is a real trip and I think what scares me most is my degree of immunosuppressive issues and the people who are rebelling … not following directives and not caring thus it’s even riskier for people like us since these people are really putting us at more risk! I think hospitals and clinics are actually safer then grocery stores!!! Mostly because the hospitals are cleaning like crazy, limiting visitors and persistently screening plus requiring you to come in with a mask on! I don’t know how many or to what level this is happening at all hospitals but it is with mine. Doing video telemedicine for most things but I have to go in for infusion and to rheumatologist due to some atypical symptoms. I feel doing so is low risk and my doctors feel that way too.
When I had to go to urgent care on Sunday, I called the doc on call who set up a video visit within 30min. He felt I needed eval at urgent care and he called Ahead of time so I wouldn’t have to wait in the waiting room or other place and it streamlined my registration. I felt like royalty lol kidding but this was extraordinary
Okey well I’ve poster enough to last awhile lol
Thanks to those who survived to reach the end of this chapter
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I’m sending you and your mom lots of warm virtual hugs @Issadora!
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Thank you… virtual hugs are best with CDC guidelines hahaha 
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LOL, so true!!
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Hi Everyone,
Just an update, since I originally started rambling on about my new(est) problems a couple of months ago. I bring it up again because it is very likely related to my diabetes. The stiffness, myoclonic seizures, and even some of the pain and numbness are due to my having Moersch-Woltman syndrome, also known as Stiff Person Syndrome (SPS). It is a poorly understood dysfunction of the motor neurons, probably having to do with blockade of GABA receptors by antibodies. In short, my brain can’t tell (some of) my muscles to stop firing. Thus, I have stiffness in my torso and upper legs (like, at the rock-hard level), dystonia (bending of the spine and legs due to muscle spasm), and myoclonic spasms (jerks in movement and involuntary movement).
How is that related to diabetes? Well, SPS is exceedingly rare (like in the 1 in 3,000,000 range for men), but it happens most often in Type 1 diabetics. The most common (non-paraneoplastic) antibody associated with SPS is GAD-65, which is also the most common antibody associated with T1. Most people with SPS also have T1 diabetes (although it’s only about 60%; 20% have cancer, the other 20% are ‘idiopathic’). Turns out that both GAD-65 and ICA (and GAD-67) can bind to the GABA receptors in the motor neurons in the brain and cause total, progressive, degenerative dysfunction. Which is where I’m at now.
I mentioned this disease before in the thread, but I’ve now been given an official diagnosis (as of last week). I am, unfortunately, now unable to work so am also navigating the wonderfully byzantine and horrifying US disability system. Which turns out to be about a full-time job for 1/4 of my “normal” pay, lol. It is so rare I don’t think most T1s need to worry about it (there are less than 250 identified cases currently in the US from what I’ve learned), but it is a co-morbidity of T1 or the underlying autoimmune problem in many cases.
Best of luck to everyone else who’s been reading in this thread! It was a really good read, and I guess I should have played the lottery a few more times. Maybe I’d be rich instead of stuck at home looking like a statue haha.
David
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Hi Issadora! After reading your posts I had to sit there kind of stunned for awhile, I mean really! How can a young woman get this much chronic pain and sickness thrown at her, starting at the age of five, and also endure the rude American cultural biases about color, weight, and gender, and still be as spunky, honest, brilliant and great hearted as you sound?! All I can say is oh my god I am so sorry you have to cope with this much, and hats off, good woman! You have kept your spirit alive and bright. Thank you for sharing all this. I love that you actively go out and shake your cage with the doctors and seek help when your heart and mind need it. I think you are an inspiration.
I reread this whole thread, and was struck by how coronavirus wasn’t even on our horizon during most of it. What a difference a couple months make!
I am sequestered in a good situation, myself. Stressing about keeping my many meds up to date and coming. I live rural and have a garden, and can finally start working in it a little, which cheers me up. I hope I can hold up for a few more years just to see what in the world comes out of all this. Hang in there, Issadora! 
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Hi David. Thank you for updating your disturbing story. One in 3,000,000 huh? What do you do with a number like that? T1 is kind of a Trojan horse, isn’t it?
I am sorry you are losing your ability to go back to work. Is there any effective treatment for SPS? How degenerative is it, mentally? It still sounds really scary to me. Good luck to you and your family.
-Linda
Hi Linda,
I don’t think there is anything to do with the 1 in 3,000,000 part other than just say “oh well!” Didn’t cause it, couldn’t have avoided it, and just have to deal with it best I can. I also have to admit I’m immensely relieved that I have SPS rather than ALS, Parkinson’s, or Huntington’s. SPS isn’t usually as immediately fatal as ALS or PLS, and it doesn’t cause dementia like Parkinson’s or Huntington’s.
Like other motor neuron disorders, SPS leads to progressive failure of the motor systems and is incurable. Treatment focuses on relieving symptoms and maximizing quality of life, but total physical disability within a couple of years is “the norm” (if there is such a thing as “the norm” for such a rare condition). The usual course is cane > walker > wheelchair > motorized wheelchair. Some people lose the ability to speak and swallow, and some people lose the ability to breathe unaided (as with ALS and PLS). I’m already at the “cane and high-powered drugs” stage, so I think I did not get the mildest version of this (although here’s hoping).
Neurologist wants to try IvIG if my insurance will cover it, since it slows progression in about 15-20% of people. The normal course of treatment is high dosage benzodiazepines, anticonvulsants, and muscle relaxants to try to avoid total paralysis and maintain some quality of life. Intrathecal baclofen pumps are pretty normal at some point (so… double cyborg!).
Thanks for the kind thoughts. My wife is more stressed out about this than I am. I figure once things calm down around COVID and I’m more used to treatment, I’ll try to find a way to financially contribute to the family. In the meantime, she’s working more hours and we have family helping. My biggest issue (other than pain) is that the high dose muscle relaxant means I can only read and write about 1 hour a day: I’m so relaxed that my eyes can’t focus, lol.
Ah well, such is life! I might end up just getting into volunteer and advocacy work. I can’t teach or research in my state, and I don’t think it will get better. Maybe we could have something like www.tuweirdneurodiseases.org!
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It’s good to hear from you David.
I hope and pray for you, and admire your resolve to deal with your diagnosis.
I’m keeping my fingers crossed that your insurance approves the IViG. As you know I’ve been on it for 28 years for my neuromuscular disease. It got me out of a wheelchair and back to almost normal for most of the past 20 years. With any luck you’ll see a slowdown in the progression of your disease.
Thinking of you and your family - I hope all of you are well
Jim
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Thank you Jim! I appreciate your kind thoughts and cheerleading the last few months, it’s been very useful. I’m going to private message you to ask about IViG treatments, side effects, etc.
We’re doing the best we can 
Cheers, David
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Dave
Have you checked the treatment option in UW?
https://medicine.uw.edu/grand-rounds/whats-new-hematopoietic-stem-cell-transplantation-autoimmune-disease-multiple-sclerosis
At some point I was worried about sps for myself and I saw that this doctor has amazing track record with treating sps folks. I remember going to the Instagram post of one of the patients and see him now run and ski after the treatment
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I’m not sure if this would be of interest to you, but you may qualify as having a print disability if you can’t physically manipulate or focus to read a book. This could give you access to audio books and accessible ebooks from services like the National Library Service and Bookshare in the USA. (I’ve used Canadian accessible library services for 20+ years and Bookshare for 5+ years and both are great resources.)
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Wow! This is great! Thanks for sharing it. The Stiff Person Syndrome part starts at 42 or 43 minutes into the video. I hope Dave can get on this doc’s list somehow.
Thank you for the link! I’m quite close to UW, so once the COVID-19 thing calms down I’ll see if I can’t go talk to this doctor.
Cheers! David
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