Looks like it's MS

[Peppergirl]

Hi

Following an issue last June with brain inflammation and lesions, which was diagnosed as a one off, I'm currently experiencing another 'relapse', which is numbness and feeling of burning on left hand side. And to top that off, double vision in my right eye. This all started on Friday. As it happened, I had a consultant appointment today about a pump and mentioned the new symptoms, just in case it was diabetes related..but I knew what it was. The consultant obviously can't diagnose but told me it looked like MS.

Does anyone here have experience of this? I'll have to have further tests but I'm sure what this is. It'll be steroids at some point so expecting issues with my BGs.

Thanks

 

[Pipp]

Hi

Following an issue last June with brain inflammation and lesions, which was diagnosed as a one off, I'm currently experiencing another 'relapse', which is numbness and feeling of burning on left hand side. And to top that off, double vision in my right eye. This all started on Friday. As it happened, I had a consultant appointment today about a pump and mentioned the new symptoms, just in case it was diabetes related..but I knew what it was. The consultant obviously can't diagnose but told me it looked like MS.

Does anyone here have experience of this? I'll have to have further tests but I'm sure what this is. It'll be steroids at some point so expecting issues with my BGs.

Thanks

Hello, @Peppergirl.
I am sorry you have such worrying symptoms.
Unfortunately I don't have the knowledge or understanding to be able to offer advice, so I am just 'bumping' your post in the hope that someone will be provide some relevant info.
Hope you get the support you need from consultant, and of course from the members here.

 

[Indy51]

I don't have personal experience, but my suggestion is to check out Dr Terry Wahls on Youtube and her book "The Wahls Protocol" based on her research into her own MS. She is also now conducting clinical trials with both MS and other autoimmune neurological diseases like ALS and Parkinson's. She uses a combination of diet, TENS and other interventions in her protocol.

 

[Peppergirl]

Thank you both for your responses. I can see lots of others on this forum have other health concerns too, and we all carry on. I will look for Dr Wahls online. Interested in diet/supplements/exercise to help.

 

[SueO246]

Hi Peppergirl,

I was diagnosed with Relapsing Remitting MS over 20 years ago and with diabetes type 2 in 2012. This latter followed months of investigation into very abnormal liver function tests and a change of the disease modifying therapy (Rebif - an interferon which had enormously reduced the relapses I was having but at some stress to my liver). I am convinced that the diabetes was prompted to a degree by the MS drugs but then I am overweight and cannot be very active but had been very careful with my diet for years, eating low GI and limiting wheat gluten and eggs - one doesn't want to too heavy when the legs can stop working at any time! I am taking a different interferon now but the raised abnormal liver and kidney test results are climbing again. The good news (!!) is that there are many more treatment options for MS now than when I was diagnosed and there was no treatment option in my NHS trust area (Sheffield) for interferon which was a live blood product then and carried the risk of CJD and hepatitis. The prescribing protocol changed under the Labour government and these expensive drugs became available in most areas. Despite the side effects I got a life back (I had been having at least 3 significant relapses a year) and managed to carry on working full time for over ten years. I had to admit defeat and take early retirement in 2012 but those years made a difference to the pension! But that's my story, everyone does MS differently.
The MS nurses are your best source of support and information - I hope you are in an area where they have a good team. What is hard is that there seems to be little support for those of us with a dual diagnosis that takes both into consideration automatically. Stay as active as you can, this will help the diabetes.
Do not stress too much about steroids, you only take the high dose for a very short time but they help your relapse to resolve much faster and enable you to get your life back faster. You won't get to have them more that once in every 12 months because of long term side effects. Make sure your MS consultant is aware of the diabetes and vice versa. And I am wondering increasingly about the auto immune nature of MS and if that has a link to the diabetes. Type 1 is being thought of as an auto immune disease now. Rereading your post and mention of a pump makes me think you may have type 1 diabetes. Ask questions!
Be prepared for all sorts of advice from people about your MS, take them with a pinch of salt and think about your life and how both conditions impact on how you can cope with different regimes.
Good luck, stay strong.
Best wishes

 

[Peppergirl]

Hi @SueO246 thanks so much for your advice. I was diagnosed in July 2017 with RRMS, trying to get the consultant to advise on best treatments due to type 1 but as you say, dual conditions are a bit tricky. I'm due to start copaxone soon. I don't want to take anything which will destroy my immune system - just yet anyway. I'd postponed the pump while I get my head around things, but now hoping to start this year. Silly me, thought 'copaxone - daily injection, no bother', but then realised just how much of the drug I would be injecting! Anyway, it's supposed to reduce relapses hopefully maybe by 30%. Considering I was dead against taking anything for a while, copaxone is progress. After 26 years of diabetes consultants, I've found the neurologist exactly the same...so will definitely rely on the nurses.

I do appreciate your response as it's rare to find others in the same situation. Take care.

 

[SueO246]

Hi @SueO246 thanks so much for your advice. I was diagnosed in July 2017 with RRMS, trying to get the consultant to advise on best treatments due to type 1 but as you say, dual conditions are a bit tricky. I'm due to start copaxone soon. I don't want to take anything which will destroy my immune system - just yet anyway. I'd postponed the pump while I get my head around things, but now hoping to start this year. Silly me, thought 'copaxone - daily injection, no bother', but then realised just how much of the drug I would be injecting! Anyway, it's supposed to reduce relapses hopefully maybe by 30%. Considering I was dead against taking anything for a while, copaxone is progress. After 26 years of diabetes consultants, I've found the neurologist exactly the same...so will definitely rely on the nurses.

I do appreciate your response as it's rare to find others in the same situation. Take care.

Good luck! Anecdotally my sister in law who was diagnosed before me with RRMS has been taking copaxone for at least 15 years with few problems. You will know about rotating injection sites etc. Consultants do get a bit blinkered, it's the mega specialism.
The DMT (disease mod. therapy reduced my relapses by more than two thirds. I hope it works for you. As an aside, I haven't had a significant relapse since I retired, the benefits of reduced stress and pressure to keep going when your body needs to stop!

 

[DCUKMod]

@Peppergirl - My sister in law has had MS for several years now. I'm sorry I can't recall which med or meds she is on, but she does very well, all-in-all. Obviously (unfortunately) she has her troubled times and those, for her affect her mobility, but also sometimes her sight.

A few months ago, as a family, they decided to adopt a reduced carb way of eating (grown up) niece fancied trimming up a bit, her father was using the way of eating for his diabetes management and it was just simpler for everyone to be eating large;y the same things.

Her medics can't quite believe the change in her. She is incredibly well and the medics are all over her (metaphorically) because all her markers and quality of life have improved so much. Needless to say, for her it's working, but she may be an outlier in that regard for all I know. I'm just happy she's well and happy.

It's an infuriating condition, but if you can get your head around T1, I'm sure you'll get your head around this too.

Very, very good luck with it.

 

[Peppergirl]

thank you, hoping low carb (1.5 years now) as well as helping my BG level also helps my MS.