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MS with Type 1 Diabetes?

& How Do I Ask My Doctor?

I was diagnosed with Type 1 Juvenile Onset Diabetes when I was 11 years old. Around the age of 22 I started developing symptoms of fatigue, vertigo, falling (a lot), extreme vision changes(blurry, floaters, bright flashes, brighter colors in left eye, and sensitivity to lights), muscle spasms, twitches and jerks. (I'd throw my pencil across a room), short term memory loss, numbness.

Oh and let me not forget the EXTREME pain. I am 36 now and been complaining to my doctors since 22...over 10 years now. Not a single one of them has ever even mentioned MS to me even though I seem to have all of the symptoms with an exception to the tremors.

I have been progressively getting worse over the years, even having to start using the scooters at the store just to run in for milk. One of my old doctors threw a fibromyalgia label on me and now everything revolves around that... I don't have the symptoms of it.

How do I ask my doctor to look into MS, without offending him? Plus, can a person with diabetes have MS too?

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Feb 09, 2012
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MS and Diabetes
by: Akrista

Hi Toni,

Seems as though you have many of the symptoms, people with MS complain about - vision problems, vertigo, balance problems (and falling), to name a few. The reason your doctor probably gave you a diagnosis of fibromyalgia is because a few of the symptoms overlap - including extreme pain.

Are any of your doctors neurologists? If not, you should try to get a referral to one. If you do have a neurologist, maybe you should try to get a second opinion for your fibro diagnosis. How to ask your doctor for one?

The only way I know to do is to just ask. Explain to him/her that you don't feel comfortable with the present diagnosis and would either like another doctor to check, or a referral to a neurologist.

You are the one that is sick. You are in pain. You have lived with this for years. You would at least like to have a thorough neurological exam to rule out the possibility of MS. Don't be afraid to speak up for yourself and if you feel uncomfortable, have someone else do it.

Another option would be to email your concerns to the doctor if they have this system in place. We've used this on several occasions and it works very well. Many times you can explain yourself better in writing. And if you have problems typing, dictate your email to someone and have them type it down for you.

If they don't have an email system in place, try writing a letter.

The other part of your question, can MSers have diabetes? It has been my experience that people with MS can have more than one medical problem or condition at the same time. So the answer to that question is yes. I've even heard of MSers who had fibromyalgia.

Hopefully you will be able to find a doctor who will listen to your concerns and you will find out if you have MS once and for all. If you have any other questions, please don't hesitate to ask.

Take care,

Akrista

Mar 21, 2012
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MS and Diabetes
by: Anonymous

I have MS and Diabetes(type 1) so yes it is possible. It is hard to find others with both but from my research it is possible. Type 1 diabetes since I was 9 years old MS since age of 33 I am now 37.

Apr 28, 2012
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MS and Type 1
by: winning lotto

Felt like I just won the lotto not only type 1 but throw some MS at me too! I just want to know how many others have both? I'd like to talk to someone in the same boat as myself.

Jun 10, 2012
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MS and Type 1 diabetes
by: Karleen

Yes, you can have both. I have had type 1 for 27 years (developed it at age 18). I was diagnosed with MS 6 months ago, but had symptoms for years. I was seeing my endocrinologist and I kept telling him for about 3 years that I had balance issues.

He told be to close my eyes for a second and then open them... Then he would say, "You have better balance than I do." After 4 years of this I demanded to get a referral to a neurologist.

I went to the neurolgist and he said it sounds like MS and had me do an MRI. Yup...I have it. So don't let a doctor intimidate you. I think back when I started to have symptoms that I could have started on a drug sooner and slowed my progression.

Aug 03, 2012
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have you had an MRI and/or lumbar puncture?
by: Robin

Hi Toni,

I was diagnosed with an MRI, but my Lumbar Puncture, (I've had 3 lumbar punctures and numerous MRI's.) You need to change doctors. I went to 3 neurologists and found a great one. I know they say FIBROMYALGIA. But that was just a cop out.

You need to go to a neurologist and tell him all the problems you've been having. If need be you need to make your insurance approve for you to go to the neurologist. You need to tell them that you might have MS - your doctor won't send you.

You are entitled to get another opinion and when you make it (your appointment), you write down all your symptoms and explain how you feel to your new doctor. Keep asking for a doctor that will understand you and help you.

God bless you in your search.

Robin

Oct 08, 2012
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ms & type 1 diabetes
by: Anonymous

Hi, I live in the UK, I'm 29 and I have diabetes of 22 years, MS of 4, coealiacs disease of 1 year and an ongoing heart problem. It's very very hard to find people with type 1 diabetes & MS, let alone anything else! From research I've done type 1 and MS is more common than anybody thought and there's a link between the two, hope this has been of help.

Feb 04, 2013
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MS and diabetes (type 1)
by: Brett

I have had diabetes (type 1) since I was 6 and MS since 29. I am now 31. Have thyroid disease also (Hashimotos) but that goes along with everything. If you have any questions feel free to contact me. Email is Rosenblatt.brett@gmail.com

Feb 05, 2013
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Wow
by: Anonymous

I can't believe after all my searching there are so many here! Lol I live in the UK and have had type 1 for 23yrs, MS for 5, coeliacs for 2 yrs and a heart problem. Every year there seems to be something new. They think I have osteoporosis now, so the answer to your question is yes.

Once you have one autoimmune disease you are more at risk for others. It's called M.A.S multiple autoimmune syndrome. Don't give up trying to get the right diagnosis. It took me 7 yrs and all that was needed was an MRI.

Mar 13, 2013
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i have both
by: Anonymous

I have type 1 diabetes since the age of one. And when I was 18 I found out I got MS with a very severe attack. Now I am only 22. I don't know anyone with both diabetes and MS.

Mar 22, 2013
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Type I diabetic and ms
by: Wife

I am married to a wonderful man. He is 47 and has been type one diabetic since six. In 2005 he had a stroke we thought. Then last year went to neurologist because thought maybe he had another stroke. Come to find out he had MS and has probably had it since his 20s.

All his signs are in the brain. Oh, he also has early signs of Alzheimer's - ugh! His immune system is so low I dread him getting sick cause usually ends in a stay at hospital. He is the strongest man I know but am wondering if there's a support system for spouses also?

Prayers to all the strong ones out there just trying to survive. He's 47, retired cause just couldn't remember basic duties at work. Anyway, anyone that can relate or share information please contact me at Tammylv1970@gmail.com

Mar 22, 2013
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Support for spouses
by: Anonymous

Hi, just read your comment about spouses and support, if you get in touch with your local National Multiple Sclerosis Society they will point you in the right direction for support, hope this helps.

Mar 31, 2013
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What treatment to go for?
by: Ruth

Hi, I have had type I diabetes for 19 years and newly diagnosed with MS in Dec 2012. I have a 15 month old daughter and I am currently trying to decide which treatment to go onto for my MS but it's really difficult to decide!

Are there any other diabetic people out there who are on treatment for MS and if so what are you on and how are you finding it with your diabetes? Any help gratefully received :).

Mar 31, 2013
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Diabetes, ms & other autoimmune d's
by: Anonymous

Every treatment is trial and error but my advice is not to listen to anybody else. MS is very individual to each person diagnosed ie... you won't find anyone with every symptom the same as you and having other autoimmune diseases make that even more so.

Know your illness's and when something isn't right for you, you'll know :-) I have diabetes, MS and other autoimmune diseases. It's taken me years & years to realize I need to do this and the damage I've done through not knowing what is right for me is silly. Treatments are not for everyone and be careful not to be a guinea pig.

Jul 26, 2014
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Yes, me too.
by: Moopy

I didn't read all the other comments, but at the moment I just got diagnosed with MS. Type 1 diabetic since 9, at age 32 got headaches (one that won't disappear). It came with double vision. Was told I was too young for things. Started with Cat-scan, no stroke there, but suggestion of MRI.

MRI and there were lots of lesions. A week after the MRI, I had a spell where I felt like I was on a boat, and refused to leave the bed for a day. Went to the doctor, he said maybe, but again systems are of a bad diabetic. MRI to back, and there were lesions there too. This week they gave up and said MS. Though, still in denial. I was on a non-steriod steriod, and avoided caffeine for the whole week to avoid highs.

Jul 26, 2014
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Dr referral
by: Anonymous

Yes, a person with diabetes can have MS. I have found in my research that those with diabetes usually end up having other autoimmune issues also. I would ask for a referral to a neurologist. I was referred to an orthopedic doctor, ent befits sent to a neurologist. One has to be a self advocate regarding health problems as doctors do not know and understand everything.

Jul 27, 2014
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My comment 05 feb 2013
by: Jodie

I just wanted to let you all know I created a Facebook page years ago its called Multiple sclerosis & diabetes. Not a lot of people use it anymore, but I would love to see it used how I intended it to be..., for advice, help, and developments in research for different auto-immune diseases. I hope this helps everyone 😊

Aug 14, 2014
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sounded farmiliar
by: Anonymous

After reading this comment I had to say something. I was also diagnosed with type 1 Diabetes when I was 11. I turned 36 in June, and I have pretty much been diagnosed with MS in the last month due to a seizure I had on July 5th.

Jan 23, 2015
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MS & Type 1 Diabetes
by: Anonymous

My son was diagnosed with Type 1 Diabetes at 13 yrs old & now at 39 yr with MS though he has probably had it for at least 6-7 years undiagnosed. Research shows having both conditions is pretty common in Sardinia and Germany.

I don't know where all of you are writing from-U. S.? - which state?. I am curious if there is a problem occurring in the U. S. that is not being addressed. What medicines have you been prescribed? Do they interfere with any of your diabetes medicines (insulin, Blood pressure, etc) and does it have the potential to do any more damage to your kidneys, eyes etc.?

Mar 12, 2015
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High Sugar Readings with Flare ups?
by: Piper White

Does anyone know if MS will cause High Blood Sugars during flare-ups? My daughter was diagnosed Type 1 March 2013 and has multiple DKA's. Always told non-compliant but that is not the case here.

She has new signs of numbness, muscle craps, Charlie horses, very high sugars, pins and needles feelings all over her body, sensitivity to light. After research It seems she may have MS as well as the Type 1 and that would be the culprit of High Sugars and DKA's.

So I am asking if any Type 1 also get High uncontrolled sugars during Flare Ups!

Dec 21, 2015
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Type 1 diabetes and MS
by: Brett Rosenblatt

I was diagnosed with diabetes when I was 6 and am now 34 so it has been a while. About 7 years ago I started getting tingling that went from my hands to my feet. I am used to this once in a while so I let it slide because I kinda didn't want to know.

Then I started getting little seizure type episodes where I would freeze up for a couple seconds and it happened every few minutes. I let that go like an idiot, but then it started happening every few seconds. I finally went to the hospital and after hours of med students saying "I have never seen this before" doctors looked at MRIs and MS was the outcome.

I am now on Tecfidera and symptom free so it is working. I started a group on LinkedIn called "Autoimmune: MS and Type 1 diabetes." I am just trying to get people like us together to talk. Check it out if you get a chance or fell free to email me at rosenblatt.brett@gmail.com if you ever had a question.

Mar 09, 2016
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Me too
by: Catrice

Hello everyone, I have had type one diabetes for 22 years. I am 36 years old. I was just diagnosed in January with MS. After serious short term memory loss and losing my balance a lot, I knew something was wrong.

Once I had my first MRI, the doctor was sure I had MS and once she saw the second MRI of my spine it was confirmed. I'm really looking for people to connect with who are living with both and see how you are able to cope with both. I also would like to know who also has a parent with MS, as my mother also has had MS for 20 years.

I can be contacted at mrs.hairston79@yahoo.com or on Facebook Catrice Hairston.

Thanks.

Apr 22, 2016
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Type 1 Diabetes and M.S.
by: Anonymous

I have been a type one Diabetic for 41 years and started having a lot of problems in my 20's. I was sent to specialists, even a psychiatrist with no diagnosis. I have my first heart stent at 37 years old and a stroke at 46 years old.

I went to my primary care physician recently because I was experiencing a lot of muscle pain. My reflexes were off so she ordered an MRI. Turns out I have had M.S. the whole time, with a lot of lesions and damage.

So, this last week I started having trouble coordinating my legs so they are saying an M.S. flare. I am getting ready to start treatment but there are warnings on the meds about high sugars, blood pressure, and heart problems. I cant afford to take risks in those areas so I am trying to decide if treatment for the M.S. is worth it.

Jul 03, 2016
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type1 and ms
by: Jules

I too have type 1 diabetes, got it at age 56. I was diagonsed with fibromyalgia 11 years ago and I now have MS so you are not alone. Keep pushing the docs. I had to otherwise they just blame it on the fibro.

Jul 03, 2016
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Living with T1D and MS
by: Brett

I love to see new posts and start to see that we are not alone. I started a group in LinkedIn called "Autoimmune: MS and Type 1 Diabetes." There are only about 8 of us so far but I am hoping more and more people join so we can form a community and help each other. Come check it out if you get a chance. Just trying to start conversations.

Brett

Jul 07, 2016
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Welcome to Use the Forums Here
by: Akrista

You are all welcome to join the forums here - The Link II to begin a discussion about this topic - MS and Diabetes. The forum also has a chat area if you happen to meet someone online at the same time.

Please make use of this service. It's a great place to post your experiences and meet others who share them.

Dec 01, 2016
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ms and type 1
by: Anonymous

I've been type one since 13, now 52 and found I have MS. Headaches, shaking, blackouts. I'm into natural healing, vitamins, and what not. Come to find out, all my vitamin taking has kept most symptoms at bay. I'm now starting tai chi and yoga to help. Meditation is also very good. They suggest trying to stay cool. That's hard in my job. I'm in the heat alot. Doing my best to stay off meds. Funny, no one told me - my symptoms - all this time they thought it was normal for me.

Mar 20, 2017
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Me too! Thought I was being original!
by: Anonymous

Type 1 at 11. MS came along at 34. Thought universe was having really bad taste. Being a nurse too, meant I had access to a lot of clinical information which in hindsight was more a hindrance than a help.

The internet the only place I found that I found that had that correlation was Sardinia. I'm in New Zealand, which is on the other side of the world. So, the environmental theory is interesting.

Although it is all that uncommon, if you have one autoimmune disorder to have another. Another common partnership is Lupus and Rheumatoid arthritis.

Apr 15, 2017
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Type I and MS
by: Anonymous

I was diagnosed with Type 1 at 11 and MS at 24/25. I'm 29 now. My hand went completely numb for weeks, but doc tried to tell me I pulled a muscle. Shortly after I started to feel like I had ants running down my arm.

I googled my symptoms and came up with MS. I didn't really know too much about the disease and thought I was a little too young to have it, but despite it all I knew something was wrong. I kept going back to different docs for weeks until one of them agreed to give me an MRI.

It lit up like a Christmas tree with MS lesions. Eventually my neurologist told me if I had waited any longer things would have become worse. My advice is too not delay and keep pushing for answers!

Jun 13, 2017
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Unfortunately you can have both...
by: Anonymous

I was diagnosed at age 7 with T1D, this past January I got the MS diagnosis at age 33. Never had any symptoms but they think I have had for more then a 10 years. Glad to know I'm not alone.

Nov 23, 2017
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Thanksgiving
by: Paul

I am sooo grateful to have found this website. I’ve had Type I DM for over 30 years. Then over the past year I started having extreme fatigue, UTIs, insomnia, culminating in losing vision in one eye and getting diagnosed with MS in April. I’m really eager to talk with others who are living with this same pair of uninvited guests! Feel free to email me at pablomccj@aol.com.

Apr 08, 2018
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Ms & type1 diabetes
by: Richard

Hi
I was diagnosed with type1 diabetes when I was 10 and recently with MS at 47. I was lucky that when I saw my local GP with one side of my face being numb she gave me a quick referral to see a neurologist. The neurologist told me it was probably pressure on my trigeminal nerve but she would send me for an MRI. After the results of the MRI came through I was told I had MS. MRI machines are great truth tellers..

Apr 22, 2018
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yep...me too
by: Anonymous

Oh my...also T1 since age 13 and just diagnosed with MS (I'm 43). ARGH!!! This is hard to deal with!

May 22, 2018
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me too!
by: Peppergirl

There's more of us than I thought! T1D since I was 14 (1992) and MS diagnosed in July 2017 but, thinking about it, I'm sure I had symptoms for years. Currently taking Copaxone as injections are what I know...not up for infusions just yet

Jun 09, 2018
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Both T1D and MS
by: Anonymous

Hi All,

Just need to check out of curiosity, if prevalence of both of these autoimmune diseases could hamper marriage and post marriage life.

Thanks.

Jun 09, 2018
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MS, T1D and marriage
by: Brett

These two diseases suck, especially if you have to do it in your own. I was just upfront with my wife about everything and when the chips are down, she always reminds me to tell her everything because "she knew what she signed up for." In short, it doesn’t have to change anything. Just need to be transparent and not hide anything.

Mar 22, 2019
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Pregnancy
by: Anonymous

Has anyone out there had both Type 1 and MS and successfully had one or two kids? If so, how hard was it? What did you have to go through?

Aug 30, 2019
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MS and type 1...Yay!
by: Anonymous

I was diagnosed with type 1 diabetes when I was 12 and with MS two days ago (I’m 33 now.) I started having symptoms of MS in my early 20’s, the doctors always blamed it on my diabetes. I finally found a doctor that referred me to a neurologist, and sure enough it’s MS. I’m feeling defeated and really depressed. I want to be able to be there for my 2 year old and not have him think that mommy’s always sick. How do I manage both diseases? I have no clue where to even start...

Sep 22, 2020
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What Type of MS with T1D?
by: ADP

We suspect my 27 year old son has MS and are waiting to get an MRI. He has been T1D since he was 11.

I've been reading about the different types of MS. Is there one type that is more prevalent with T1D? At this point, the best we can hope for is the type that can be managed and slowed.

Dec 09, 2020
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T1D and MS
by: Akrista

This seems to be a recurring theme here in this thread - people with Type 1 diabetes or T1D, eventually go on to develop MS later. Not every person with T1D will have MS, however, I'd be interested to see the actual numbers as far as how many do develop multiple sclerosis.

I'll have to look into this a little more and as far as the question - what type of MS are people with diabetes more likely to develop - I'm not sure about that either. It may be that the type of MS people develop is the same across the board, meaning most people tend to have RRMS or relapsing remitting MS. It's the most common form of MS.

That's another thing I will need to look into. Maybe we could add a poll to see what type of MS people with T1D develop most often. Maybe we can provide some data to those studying this. Stay tuned for a poll and I'll update with whatever I find out, as well.

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