Multiple Sclerosis and Type 1?

[TyeD]

Does anyone else out there have Multiple Sclerosis and Type 1 Diabetes? My medications are conflicting and I'm loosing control.

 

[catapillar]

What is you MS treatment @TyeD ? Are you being treated with steroids? Steroids can impact on blood sugar control. If that's the case, you should be seeking advice from your endo consultant or your DSN on how to adjust your insulin doses to deal with this. That may include an increase in yout basal dose and an adjustment to you insulin to carb ratio and correction factor.

I don't have any experience of MS. It must be difficult trying to get two medical teams to coordinate. But if the difficulty is MS medication having impact on diabetic control, do seek advice from your diabetic care team on how to deal with this. They will have had a lot of other type 1 patients on steroids so will be able to offer advice on this.

 

[NicoleC1971]

Hi. Have you come across this lady on YouTube? She is frequently referenced in discussions on low carb and Paleo diets. She suggests a dietary protocol for MS (she is an MS sufferer and a medical doctor).

Also it seems encouraging that the Sheffield research has showed some people reversing their condition by stem cell transfer.
Hope you find some ways to help yourself remembering that your doctors tend not to be educated on nutritional stuff!

 

[DCUKMod]

Does anyone else out there have Multiple Sclerosis and Type 1 Diabetes? My medications are conflicting and I'm loosing control.

Hi there Tye.

Firstly, I need to declare a couple of things: I am not T1, and nor do I have MS. My SiL doesn't have diabetes, but does have MS (and has had it for several years now).

Around a year ago, my brother and his family decided to pare back their carb a bit, to help with his T2. To make meals easy, SiL joined in too, so she went incidentally lower carb. I have no idea how LC they have gone, because they've taken the easy approach of just ditching the beige stuff (bread, rice, sugar) and root veg and most fruit.

Bottom line is, I spoke to her a couple of months on from adopting this (they live a long way away) and she was bursting to say how well she was feeling and how at her latest MS appointment many of her tests and blood markers had improved. She had also lost a few kilos, which wasn't the objective, but she said she felt fab.

Of course, there could be some psychosomatic impact there as was on the receiving end of complimentary feedback, but just throwing that into the ring.

I appreciate a LC diet isn't for everyone, and as a T1, you can have more flex in terms of managing your blood sugars for carb heavier foods, so I wouldn't dream of suggesting that LC is the way to go. I'm just wondering if reducing the peaks and troughs by easing the food load could help in any way.

Good luck with it all. I know how frustrating, and sometimes completely bewildering both conditions can be, never mind them together.

Good luck with it all. Hopefully someone with more relevant experience than me will be able to help you a bit.

 

[Sesli8]

Does anyone else out there have Multiple Sclerosis and Type 1 Diabetes? My medications are conflicting and I'm loosing control.

Hi @TyeD,

Yep I'm as lucky as you and have both! ;-p T1D since 1975 and RRMS since 2014. Just had to stop Tysabri as went JCV positive and due to start Gilenya in a couple of weeks. How ya doing? xxx

 

[DavidGrahamJones]

Sheffield research has showed some people reversing their condition by stem cell transfer.

I know 2 people who have received this treatment, one in the UK and one in the US, both self funded and it isn't cheap. Success is not guaranteed although certain types of MS seem to respond better than others. I wish I knew a lot more about MS, I operate a barochamber at an MS centre and I'm always interested to learn about people's therapies.

 

[DavidGrahamJones]

Does anyone else out there have Multiple Sclerosis and Type 1 Diabetes?

Welcome to the forum, I wish I could offer some help. I operate a barochamber at an MS centre and I've not met anyone in your position, I'll keep my ears and eyes open. Just out of interest, do you have access to an MS centre with a barochamber?

Yep I'm as lucky as you and have both!

Just to say welcome to the forum. May I ask if you have access to an MS centre with a barochamber?

In case you're not familiar with what happens in a barochamber this is a video done by a centre in Hertfordshire, there are centres throughout the UK.

 

[BohemiansRed12]

Hi @TyeD and @Sesli8 I have diabetes since 2016. Was diagnosed a week ago with MS and steroid treatment has made my BG levels very high.
I'm also suppose to start on Gilenya in a few weeks too.
@Sesli8 do you notice any improvements since starting treatment?

 

[TyeD]

Hi @TyeD and @Sesli8 I have diabetes since 2016. Was diagnosed a week ago with MS and steroid treatment has made my BG levels very high.
I'm also suppose to start on Gilenya in a few weeks too.
@Sesli8 do you notice any improvements since starting treatment?

I had steroids after my first 2 relapses and yes, they did screw up my blood sugars big time.
I don't know what Gilenya is. I am on Avonex an intramuscular injection.

 

[Sesli8]

Welcome to the forum, I wish I could offer some help. I operate a barochamber at an MS centre and I've not met anyone in your position, I'll keep my ears and eyes open. Just out of interest, do you have access to an MS centre with a barochamber?



Just to say welcome to the forum. May I ask if you have access to an MS centre with a barochamber?

In case you're not familiar with what happens in a barochamber this is a video done by a centre in Hertfordshire, there are centres throughout the UK.

Hi David,

I'd never heard of it and I'm in Oz!

 

[Sesli8]

Hi @TyeD and @Sesli8 I have diabetes since 2016. Was diagnosed a week ago with MS and steroid treatment has made my BG levels very high.
I'm also suppose to start on Gilenya in a few weeks too.
@Sesli8 do you notice any improvements since starting treatment?

Hi @BohemiansRed12,

When I got IV steroids on diagnosis l had to run my pump at 200%! Been on Gilenya about three and a half weeks now and not really noticed anything except an increase in dizziness but that could just be the MS or stress or anything! If you're on FB I recommend joining the Gilenya Support Group. Tons of relevant info in there

xxx

 

[DavidGrahamJones]

I'd never heard of it and I'm in Oz!

That's interesting. After doing a bit of googling it looks like there is a slightly different attitude to this form of therapy in Australia. It seems to be considered as a complementary therapy, maybe that's why.

I would like to encourage anyone with MS to at least investigate this form of therapy, complimentary or not. There are 50 MS Centres in the UK, run as a charity, that provide this form of therapy to MS sufferers, as well as people recovering from broken bones and cancer treatment. The centre where I volunteer can treat up to 200 people per week with that number being increased with the introduction of sessions in the evenings and at the weekend. Anecdotally I can say that the people who use the facility do get a benefit, although not a cure, a definite benefit and as a user myself I can say that I wouldn't use the facility if I didn't get a benefit (non MS, but symptoms of myopathy in leg muscles).

Interestingly Wikipedia say that there is no proof that this therapy is any good for people with MS or cancer, I know that our centre has been monitoring feedback from clients for a long time. I'll have to check to see if they've ever been published. My exposure to not only using the barochamber but speaking to people with MS who use the barochamber paints a different picture to Wikipedia.

Apologies for "prattling" on about this therapy, it looks like it may have the same reputation as low carb diets.

 

[andromache]

Hi there Tye.

Firstly, I need to declare a couple of things: I am not T1, and nor do I have MS. My SiL doesn't have diabetes, but does have MS (and has had it for several years now).

Around a year ago, my brother and his family decided to pare back their carb a bit, to help with his T2. To make meals easy, SiL joined in too, so she went incidentally lower carb. I have no idea how LC they have gone, because they've taken the easy approach of just ditching the beige stuff (bread, rice, sugar) and root veg and most fruit.

Bottom line is, I spoke to her a couple of months on from adopting this (they live a long way away) and she was bursting to say how well she was feeling and how at her latest MS appointment many of her tests and blood markers had improved. She had also lost a few kilos, which wasn't the objective, but she said she felt fab.

Of course, there could be some psychosomatic impact there as was on the receiving end of complimentary feedback, but just throwing that into the ring.

I appreciate a LC diet isn't for everyone, and as a T1, you can have more flex in terms of managing your blood sugars for carb heavier foods, so I wouldn't dream of suggesting that LC is the way to go. I'm just wondering if reducing the peaks and troughs by easing the food load could help in any way.

Good luck with it all. I know how frustrating, and sometimes completely bewildering both conditions can be, never mind them together.

Good luck with it all. Hopefully someone with more relevant experience than me will be able to help you a bit.

I have had RRMS for

Hi @TyeD and @Sesli8 I have diabetes since 2016. Was diagnosed a week ago with MS and steroid treatment has made my BG levels very high.
I'm also suppose to start on Gilenya in a few weeks too.
@Sesli8 do you notice any improvements since starting treatment?

I have had RRMS for years. Sorry to hear that you have joined that club too. Those 3 day blasts of IV high dose steroids send my blood glucose through the roof. That’s when I first realised that glucose control was a problem for me. I do not have a diabetes dx and try to manage things through L-ish CHF, and feel that helps with the MS as well as with metabolic health. Plus Tysabri, admittedly! Tha lovely thing about LCHF is that it is good for a person in so many ways.

 

[andromache]

I have had RRMS for

I have had RRMS for years. Sorry to hear that you have joined that club too. Those 3 day blasts of IV high dose steroids send my blood glucose through the roof. That’s when I first realised that glucose control was a problem for me. I do not have a diabetes dx and try to manage things through L-ish CHF, and feel that helps with the MS as well as with metabolic health. Plus Tysabri, admittedly! Tha lovely thing about LCHF is that it is good for a person in so many ways.

Meant to say, it has always seemed to me that getting on an effective DMD, as you are planning to do, is key. The more effective the RRMS treatment, the fewer and less severe the acute relapses and the fewer times you have to reach the the heavy guns in terms of high dose steroids. Those babies are better avoided where you can, particularly for person with diabetes issues, although they are sometimes necessary, and that’s fine too.

 

[BohemiansRed12]

Hi @BohemiansRed12,

When I got IV steroids on diagnosis l had to run my pump at 200%! Been on Gilenya about three and a half weeks now and not really noticed anything except an increase in dizziness but that could just be the MS or stress or anything! If you're on FB I recommend joining the Gilenya Support Group. Tons of relevant info in there

xxx

Hi @BohemiansRed12,

When I got IV steroids on diagnosis l had to run my pump at 200%! Been on Gilenya about three and a half weeks now and not really noticed anything except an increase in dizziness but that could just be the MS or stress or anything! If you're on FB I recommend joining the Gilenya Support Group. Tons of relevant info in there

xxx

Thanks I'm on FB so will definitely look at joining the support group . The doctors told me Gilenya is supposed to be the most suitable treatment for MS if you have diabetes......
Hope you start to notice some improvements soon x.

 

[BohemiansRed12]

I have had RRMS for

I have had RRMS for years. Sorry to hear that you have joined that club too. Those 3 day blasts of IV high dose steroids send my blood glucose through the roof. That’s when I first realised that glucose control was a problem for me. I do not have a diabetes dx and try to manage things through L-ish CHF, and feel that helps with the MS as well as with metabolic health. Plus Tysabri, admittedly! Tha lovely thing about LCHF is that it is good for a person in so many ways.

I was supposed to have 3 days of IV steroids but they gave me 5 days and were offering an extra 2 days.
The other patients in the ward kept saying that steroids are great but wasn't feeling the best when receiving the treatment.
I was diagnosed with LADA and found LCHF to help for the first year and half but things started to get more difficult in last 6 months BG wise.

 

[BohemiansRed12]

That's interesting. After doing a bit of googling it looks like there is a slightly different attitude to this form of therapy in Australia. It seems to be considered as a complementary therapy, maybe that's why.

I would like to encourage anyone with MS to at least investigate this form of therapy, complimentary or not. There are 50 MS Centres in the UK, run as a charity, that provide this form of therapy to MS sufferers, as well as people recovering from broken bones and cancer treatment. The centre where I volunteer can treat up to 200 people per week with that number being increased with the introduction of sessions in the evenings and at the weekend. Anecdotally I can say that the people who use the facility do get a benefit, although not a cure, a definite benefit and as a user myself I can say that I wouldn't use the facility if I didn't get a benefit (non MS, but symptoms of myopathy in leg muscles).

Interestingly Wikipedia say that there is no proof that this therapy is any good for people with MS or cancer, I know that our centre has been monitoring feedback from clients for a long time. I'll have to check to see if they've ever been published. My exposure to not only using the barochamber but speaking to people with MS who use the barochamber paints a different picture to Wikipedia.

Apologies for "prattling" on about this therapy, it looks like it may have the same reputation as low carb diets.

I found LCHF to have helped me at least in the beginning. Before leaving hospital I heard about Paleo diet helping helping some people with MS.

Therapy sounds interesting but don't know if they have anything like that where I live.