Hi everyone - the trauma that is life!!

[sarahb83]

Hi everyone it’s been a while. So September 21 diagnosed with type 2 with an hba1c of 89 - by April 22 I had lost a huge amount of weight and lowered my hba1c to 38 without the help of any meds. It’s was like a whole new me I had an amazing holiday in Orlando last June and my life was ticking along great intact better than it’s ever been. Fast forward to October was feeling fine but my vision went a bit weird in my left eye all I can describe it as is it was like looking through frosted glass in my left eye and my peripheral vision was knocked off, so after a couple of days admitted defeat and phoned the optician after speaking to him was told not to bother going in but to go straight o the eye emergency in Newcastle instead. Oh great I though so off I went and on intial assessment when the nurse who’s checking you over runs for a doctor it worries you a tad bit nothing to when the doctor then says have you had a bang on the head and you know you havnt you know it’s serious. Was put through countless tests/examinations for the loveliest doctor to say to me well it looks like I’m correct you have optic neuritis oh said I but I have my blood glucose under really good control. Yes I know you do says the doctor it’s so good there’s absolutely no sign you have it in any of your stats and your eyes are beautifully healthy - then it hit me it wasn’t my eyes at all. Fast forward dec 22 the day that changed my life forever when the neurologist sat me down and told me I have multiple sclerosis. No danger I can’t possibly have I’m not sick this is the fittest I’ve ever been in my entire life I’ve never felt better you can’t say this to me I’ve put everything I have into turning my life around after being diagnosed with type 2 diabetes and then he hit me with another brick and told me he thinks I’ve had this for over 20 years you know when people say to you stop panicking about your diabetes it could be worse, well yeah it most definitely can be so 2023 and it’s all change again out has to go the high impact cardio and in comes yoga and Pilates for balance and strength. Out goes the dairy that I’ve put in to help with the low carb lifestyle and meat and incomes low fat vegan diet

 

[rebrascora]

Oh! Goodness me, Sarah! I am so sorry to hear this. I have so often wondered how you were getting on and assumed/hoped, since your last post was so positive, that you were doing great. Even reading through your post above, I kept thinking it was going to be something like a torn retina or cataracts but never imagined something so serious.

It is so unfair for life to give you such a massive kick in the teeth when you have put so much effort into becoming more healthy and were feeling so much better. I really don't know what to say but sending huge (((HUGS))) your way and hoping that there is treatment for you which will enable you to have a good quality of life for a long time to come. Sending very best wishes to you and your family for what must be an incredibly difficult time. XX

 

[sarahb83]

Oh! Goodness me, Sarah! I am so sorry to hear this. I have so often wondered how you were getting on and assumed/hoped, since your last post was so positive, that you were doing great. Even reading through your post above, I kept thinking it was going to be something like a torn retina or cataracts but never imagined something so serious.

It is so unfair for life to give you such a massive kick in the teeth when you have put so much effort into becoming more healthy and were feeling so much better. I really don't know what to say but sending huge (((HUGS))) your way and hoping that there is treatment for you which will enable you to have a good quality of life for a long time to come. Sending very best wishes to you and your family for what must be an incredibly difficult time. XX

Yeah difficult most definitely. I had a huge depressive episode a few days before and they think that’s what caused the relapse. But my depression that appeared to come out of nowhere a few years ago and I can’t seem to get a good grip over turns out isn’t my fault at all the depression has been brought in and caused by this it’s made everything fit like pieces of a jigsaw. I’m 39 now and he thinks I’ve had it since I was a teenager from my past medical history he had been through absolutely everything in minute detail he was absolutely amazing with me no meds at all he says I don’t need them he went through all the images in detail and gave me an extremely good prognosis he’s describing it as a benign form of relapsing remitting but it’s vital I remain in good control of my diet and stress (not easy with 3 teenagers in the house lol) just fingers crossed I can remain as well as possible x

 

[everydayupsanddowns]

Oh my goodness @sarahb83, how absolutely devastating for you

How lovely to hear though you were dealt with so thoroughly, and carefully, and your full history taken into account.

Great that the prognosis is good, and I am absolutely sure that all the effort you have put in to improve your diabetes will have helped enormously, even if your new diagnosis means a few more complicated factors and requirements to balance now.

 

[rebrascora]

So pleased that the consultant took the time to be really thorough and explain everything and help you come to terms with it and in many ways, wonderful that you don't need any medication at this time. I guess in some respects your diabetes gave you a helpful experience in learning to manage your diet, although I appreciate that this condition will cause further limitation, but hopefully you will still be able to find some treats which will fit with both conditions.

Really wishing the very best for you. In some respects I suppose it may be a bit of a relief to know that there is a cause for the depression and anxiety you have been struggling with. I know for my own mental health, improving my diet and gentle exercise helps enormously, so hopefully you are on a good path to remain as healthy as possible, but I can understand it must be incredibly daunting having that diagnosis hanging over you. Sending lots of love and more (((HUGS)))

 

[sarahb83]

Oh my goodness @sarahb83, how absolutely devastating for you

How lovely to hear though you were dealt with so thoroughly, and carefully, and your full history taken into account.

Great that the prognosis is good, and I am absolutely sure that all the effort you have put in to improve your diabetes will have helped enormously, even if your new diagnosis means a few more complicated factors and requirements to balance now.

Oh my goodness @sarahb83, how absolutely devastating for you

How lovely to hear though you were dealt with so thoroughly, and carefully, and your full history taken into account.

Great that the prognosis is good, and I am absolutely sure that all the effort you have put in to improve your diabetes will have helped enormously, even if your new diagnosis means a few more complicated factors and requirements to balance now.

Trying my best not to wallow and do everything I can to be the best I can possibly be, life goes on and I have 3 kids that need me. My neuro consultant is one of the best in his field so I am very lucky in that respect and I feel well looked after, he said look if this were me and the universe said would I rather have uncontrolled type 2 diabetes because it’s very very hard to control you are the first person that I have seen in my entire career that has managed to do what you have or a very mild benign form of relapsing remitting ms well then I’d take the benign rrms because uncontrolled diabetes shreds your entire body. David has been his amazing self I couldn’t wish for a better husband in many aye I’m one of the luckiest people in the world but I wish this was a path I didn’t have to walk.

 

[sarahb83]

So pleased that the consultant took the time to be really thorough and explain everything and help you come to terms with it and in many ways, wonderful that you don't need any medication at this time. I guess in some respects your diabetes gave you a helpful experience in learning to manage your diet, although I appreciate that this condition will cause further limitation, but hopefully you will still be able to find some treats which will fit with both conditions.

Really wishing the very best for you. In some respects I suppose it may be a bit of a relief to know that there is a cause for the depression and anxiety you have been struggling with. I know for my own mental health, improving my diet and gentle exercise helps enormously, so hopefully you are on a good path to remain as healthy as possible, but I can understand it must be incredibly daunting having that diagnosis hanging over you. Sending lots of love and more (((HUGS)))

Thank you so much for your kind words, I know there are people much worse off than me so trying my hardest to get in with it, and I know how exceptionally kind and supportive David is and how lucky I am to have him as my husband x

 

[AndBreathe]

@sarahb83 , I doubt this is much consolation, but my former sister in law was diagnosed with MS in her 30s, but is now in her 50s, living a good life, working as a solicitor. She does have odd flares, which are very scary but deals with them swiftly. Those flares haven't resulted in noticeable downturns in her health once they pass.

I wish you the very best. You have a lot to get your head around at the moment.

 

[Pumper_Sue]

Hello @sarahb83, the best advice I can give you is to make sure you stay active. My Neurologist basically said use it or loose it regarding my mobility when diagnosed with MS so having a dog is very useful 🙂 If your body says rest then rest.
Diet wise I eat what I want as long as it's gluten and lactose free (no choice).
Yes stress does make symptoms worse if the teenagers are the issue perhaps rehome them I have the progressive form of MS and it hasn't progressed very much at all in the last 3 years or so mainly because I keep myself moving within my limitations (fatigue) being the main factor.

Your neurologist sounds full of common sense and positivity. MS is a very scary word when first heard so once over the first hurdle carry on as normal. 🙂

 

[sarahb83]

Hello @sarahb83, the best advice I can give you is to make sure you stay active. My Neurologist basically said use it or loose it regarding my mobility when diagnosed with MS so having a dog is very useful 🙂 If your body says rest then rest.
Diet wise I eat what I want as long as it's gluten and lactose free (no choice).
Yes stress does make symptoms worse if the teenagers are the issue perhaps rehome them I have the progressive for of MS and it hasn't progressed very much at all in the last 3 years or so mainly because I keep myself moving within my limitations (fatigue) being the main factor.

Your neurologist sounds full of common sense and positivity. MS is a very scary word when first heard so once over the first hurdle carry on as normal. 🙂

Do you mind me asking how old you were when diagnosed and which kind? He thinks I’ve actually had this over 20 years without knowing and that combined with a very low lesion load and how I am physically makes him very confident to give me such a good prognosis but obviously nothing is guaranteed with this x

 

[sarahb83]

@sarahb83 , I doubt this is much consolation, but my former sister in law was diagnosed with MS in her 30s, but is now in her 50s, living a good life, working as a solicitor. She does have odd flares, which are very scary but deals with them swiftly. Those flares haven't resulted in noticeable downturns in her health once they pass.

I wish you the very best. You have a lot to get your head around at the moment.

Thank you so much for telling me this I know a few people with it and some affected much worse than others, I hope my consultant is correct and that I’m at the lesser end of this x

 

[Pumper_Sue]

Do you mind me asking how old you were when diagnosed and which kind? He thinks I’ve actually had this over 20 years without knowing and that combined with a very low lesion load and how I am physically makes him very confident to give me such a good prognosis but obviously nothing is guaranteed with this x

I was in my 50's when eventually diagnosed. Had all the scans which showed I had lesions then basically forgotten about for 5 years until an apt arrived to see the neurologist again. Had, had the symptoms for 20+ years so when I saw the MRI report it was no surprise.
Disgusted I had to have to wait 5 years from scan for an official diagnoses. Then again that's the wonders of the NHS.

 

[sarahb83]

I was in my 50's when eventually diagnosed. Had all the scans which showed I had lesions then basically forgotten about for 5 years until an apt arrived to see the neurologist again. Had, had the symptoms for 20+ years so when I saw the MRI report it was no surprise.
Disgusted I had to have to wait 5 years from scan for an official diagnoses. Then again that's the wonders of the NHS.

Yeah so you think it’s been quick for me? Dodgy vision mid October, mri November appointment with the neurologist 15th December and officially diagnosed then. It feels scarily quick x

 

[Leadinglights]

Yeah so you think it’s been quick for me? Dodgy vision mid October, mri November appointment with the neurologist 15th December and officially diagnosed then. It feels scarily quick x

So sorry to hear of your diagnosis.
I didn't know vision was affected with MS. I have known someone for 40 years and she struggles with her balance now but was an active bellringer and had a responsible job in education during her working life.
One of the Occupational therapy lecturers where I worked has MS but she said it was not the right sort of MS for some new treatment that had been developed so was no good for her.
It must have been a shock for you but the fitter you can stay the better.

 

[Pumper_Sue]

Yeah so you think it’s been quick for me? Dodgy vision mid October, mri November appointment with the neurologist 15th December and officially diagnosed then. It feels scarily quick x

Nah just means your area has a better apt system and the left and right hand does know what it's doing. 🙂

 

[Pumper_Sue]

So sorry to hear of your diagnosis.
I didn't know vision was affected with MS. I have known someone for 40 years and she struggles with her balance now but was an active bellringer and had a responsible job in education during her working life.
One of the Occupational therapy lecturers where I worked has MS but she said it was not the right sort of MS for some new treatment that had been developed so was no good for her.
It must have been a shock for you but the fitter you can stay the better.

Progressive MS isn't treated by the bucketful of poisonous drugs on offer, we are basically left to get on with things with a yearly check up every 5 years (pardon the sarcasm)
Vision can be affected if you have lesions on your optic nerve.
Same with balance and any symptom really just depends where the lesions are.

 

[Elenka_HM]

I’m one of the luckiest people in the world but I wish this was a path I didn’t have to walk.

That's a beautiful sentence and in a way I feel similar about my diabetes. I hope with the experience from managing your diabetes and the support from your loved ones, this new struggle is not such a big one. Hugs!

 

[sarahb83]

It’s vegan but includes certain fish and shellfish so not completely vegan. Have you looked at the research of one of the leading experts in ms dr George jelinek? Not only is he a professor in emergency medicine with a world leading ms research centre in Australia he actually has this disease himself and 23 years post diagnosis he’s as strong and fit and healthy as he was at diagnosis - he follows the oms way of life and swims and runs every day of the week. My consultant said you don’t have to go completely off meat one serving a week is ok - one serving a week? Well I’d rather do without. Thank you for your advice though x

 

[Docb]

Sorry to hear about your diagnosis @sarahb83. Once brain tumours and strokes have been eliminated, MS is high on the list of probable causes for vision problems. I have an acquired nystagmus and a few other things which are consistent with diagnosis of MS but I have not been given that diagnosis because nothing has, as yet, been seen on the various brain scans I have had.

My own thought for what it is worth is that you take much of the dietary advice given by people selling books and keyboard warriors with a large metaphorical pinch of salt. If there were anything in it, then everybody with MS would be doing it and I am quite sure that is not the case. Sounds like you have got good neurological support - listen to them.

 

[sarahb83]

Sorry to hear about your diagnosis @sarahb83. Once brain tumours and strokes have been eliminated, MS is high on the list of probable causes for vision problems. I have an acquired nystagmus and a few other things which are consistent with diagnosis of MS but I have not been given that diagnosis because nothing has, as yet, been seen on the various brain scans I have had.

My own thought for what it is worth is that you take much of the dietary advice given by people selling books and keyboard warriors with a large metaphorical pinch of salt. If there were anything in it, then everybody with MS would be doing it and I am quite sure that is not the case. Sounds like you have got good neurological support - listen to them.

Yeah I trust him. I’m lucky in that my neurologists specialist field is ms I know lots of other people in other parts of the country that arnt that lucky. I also feel quite lucky in that the changes are in some ways progression of the big changes I made when diagnosed with type 2 he basics to me were sugar is bad it’s very bad for your brain well ok I can cope with that cos it’s not good for my diabetes either lol so he said avoid simple carbs they arnt good for general brain health it’s got to be complex carbs and no processed food you’ve got to cook everything from scratch again I’m quite ok with that cos that’s what I do now anyway since I was diagnosed with diabetes lol all that’s annoying is I wasn’t a big meat eater before but then when my type 2 was diagnosed and out went the simple carbs in came lots of meat which is now got to go but I’m happy to take control of the things that I can have control of