I have just recently been diagnosed with relapsing-remitting MS along with my T1D. There seems to be a VERY small number of T1D’s with MS. I’m desperately trying to find some people that I can talk to, that can ‘relate’ to what I’m experiencing. Dealing with both diseases is a constant struggle and never ending cycle. Please share how you have dealt with these diseases together. I would appreciate any comments. Thank you.
I don’t have MS yet. My Dr wants to test me for it. When I originally went in with my symptoms, he wanted me to get an MRI and see a neurologist specializing in MS, though he was hoping to find me a local-ish neuro who had experience with MS and T1D. Then I switched jobs and didn’t have health insurance for 3 months. This week, I’m going to get back on it. My symptoms are weird. My right thigh was numb for several weeks last year, I’m noticeably weaker on my right side (despite being right handed), I have blind spots in my right eye that i’ve been told are not explainable by my NPDR, I’m tired-kind of- all the time (I can work my 12 hour shifts without too much problem, but I’m just generally fatigued). I have tremors on occasion in both hands, but more pronounced in my right hand.I also have a history of Epstein-Barr (Sp?). All labs have come back normal, I don’t have any vitamin deficiencies, or anything crazy going on in that sense.
I really wasn’t much help, but I’m always hear to listen. Feel free to private message me. I know that things can be scary and frustrating, and just horrible.
ETA: My dad’s HR guy at work’s wife has MS and is still able to work, she’s in her early 60’s. I thought that might shed a tiny bit of hope or comfort for you.
I’m so sorry about your ms diagnosis. It is very hard to diagnose ms so you might want to get a second opinion and make sure you have it. Advanced Lyme’s disease can cause similar symptoms and it is also very hard to diagnose.
I think the remitting kind is the best one to have because you can live a long time without serious effects with it. I met someone who has ms 2 years ago, she has been in remission for a long time and had even stopped medication.
Here’s a good website: http://www.thisisms.com/forum/
How are you doing? This conversation is old…but I hope to start it again. I have T1 and MS. It is strange to have both, both require meds, have complications, and having both is just downright depressing at times My MS has been in remission for 5 years. I’ve been dx with T1 for 23yrs.
Hope you are well, and ping if you are still interested in talking!
I have diabetes AND Multiple Sclerosis…
My D-Dragon is a bit weird, I have been Dx’d with every type except gestational (Ha Ha, a guy). For decades they blamed my neurological issue on my diabetes. I tried telling them ‘something ELSE’ was wrong. That bought me a trip to le SHRINKS.
I blame foreign/sea duty Navy immunizations for my diabetes (pancreatitis) and MS. Balancing multiple issues is FUN (not).
Doctors are not interested in testing me, saying it would NOT change my treatment, on MDI and treated as type-1, instead of 1b or 3c?
How are you all doing? Haven’t heard anything in a while. It’s looking increasingly likely that I’m in this category myself.
Started having some weird neurological symptoms last year that initially mimicked diabetic neuropathy. My doctor thought it was unlikely I’d have significant neuropathy so soon after diagnosis (2016) and with the kind of control I’ve been able to maintain (average A1c is below 5.0% since 3 months after diagnosis). She sent me to a neurologist who determined that it didn’t appear to be related to diabetes.
About six months ago, started to get dizzy, numbness on my right side (foot, hand), pain in my right hand, some weird double vision. Went back to the neurologist a month ago and heard “MS” for the first time. He ordered an MRI, which has come back “weird but with no obvious lesions.” They have started me on Cymbalta for pain (which has actually worked well!), and the next step is lumbar puncture.
Most alternatives have been ruled out by my doctors, and only transverse myelitis, Lupus, and MS are left on the table, with the most likely being MS. Fortunately, my blood sugar has been relatively stable, and the Cymbalta doesn’t appear to mess with it too much. If the lumbar puncture comes back positive and I start the steroid infusions, how have you all dealt with that?
David, as you know, I also have SLE (lupus) and a neuromuscular disorder (demyelinating motor neuropathy … also tipping my hat to @JDavid, my former endocrinologist was convinced he’d discovered a “new motor neuropathy” related to T1D. Sadly for him he couldn’t have been more wrong).
As far as steroid treatments if it’s MS, prednisone is the standard order for inflammatory disorders, and it doesn’t play nice with your BG control.
I found that on oral prednisone for 4-6 weeks, it basically wreaks havoc on control. (Add to that that oral prednisone cannot be stopped suddenly, you have to wean off it for 4-6 weeks).
I originally took oral prednisone for Lupus flares, but after experiencing T1 BG control issues, I moved onto IV infusions of hydrocortisone, methylprednisolone and even dexamethasone.
IV meds are far easier on the system, with the IV drugs only interfering with BG for 24-72 hours.
Yes, you are definitely in a similar (and maybe even related) boat! Thanks again for your support and information, it’s been invaluable to me.
This is really good, since one of the major decisions (I’m starting to learn) in MS treatment is between oral steroid use and IV infusion two or more times a year. Many folks with MS seem to prefer the oral treatment (as long as it is working) because they don’t have to take a day or three in the hospital. But, for those of us with T1, it makes sense that treating 3 days at a time or 6-10 days a year with crazy BG is a lot simpler than steroid-crazy BGs 365 days a year
I think at this point my wife is more worried about all of this than I am. My recent headspace has been: “alright, one more challenge…bring it on!” Maybe it’s because my 3 year old son is in a super fun and happy space right now, and it’s making me just excited for life in general. Could also be the anti-depresssive side-effects (in my case) of Cymbalta haha. Regardless, I’m feeling pretty positive, and am just hoping I can get a definitive diagnosis and start some pro-active treatment (rather than just treating the symptoms).
Congrats!!! on WINNING the AI (autoimmune LOTTERY, being SADcastic, my new word).
U do know, having one AI disease, makes you more susceptible to got other AIs?
I deal with a multitude of AI issues 24/7/365. Strangely my diabetes type is extra WIERD, type-1b. (so my type-1 is NOT AI, go figure?) My AI list: Multiple Sclerosis (RRMS flavor), Psoriasis, Rheumatic fever (heart valves), and now Addison’s is the newest. My MS Dr. refused to give me Prednislone for MS, but did give me Baclofen for the MS HUGs, works good). I am on Glatopia for MS. Last year Addison’s reared its ugly head. I had problems galore with that. I became a “BRITTLE”
Type-1b diabetic, wild swings between the 40s and 390+, even one spike over 650!. I had to go to 1/2 unit insulin dosing, and a CGM to get a grip on things.
When I started Addison’s treatment, it was Prednislone, that kept me out of a AD crisis. Then for reasons beyond normal, I had to get an endo out of town. She moved me to Hydrocortisone. That took a little more trial & ERROR to get it stable.
I do take more insulin than before, but with the Cortef (a great generic) dose stable, my BGs are now more stable, and NO MORE “BRITTLE” diabetes. I went thru H311 last year, but I survived, (more than U can imagine & much more than I am telling here today)
** # GOOD luck, and U CAN DO IT! #**
JDAVID, (aka “Dr. Joe”
Raising my hand, I have T1 and MS. T1 for 40 years, and MS for 22. Mine is relapsing remitting and stopped taking meds for it when I got pregnant with my first (12 yrs ago) and never went back.
I am lucky and have been in remission for a long time. I think my only issue is a bit of muscle spasticity in my right calf. I moved, and my new endo wanted me to “establish a relationship with a local neuro” so I went through the testing all over again. MRI etc. The DX was of course MS lesions etc… but I declined to go on medication. I feel great, but as you know it is always out there.
Great to hear from you both (and Jim as well with related issues)! I found out today that I’m being referred to an MS clinic since doing anything with a “generalist” Neurologist takes forever around here. Six months for appointments, a month to read an MRI, etc… I’ll update when I hear more, but it is really encouraging to hear about people dealing with both issues successfully.
And, Dr. Joe, good gracious! You’ve got a lot to deal with, but it sound like you’re dealing really well. I appreciate your information and experience!