MS anyone here a sufferer?

Paparika

I've just been told by my consultant that i have it. would love some advice on how to look after my self.

Background....

I have Uvitis, an auto immune disease that affects my eyes and is the primary disease.

I was told that there would be a risk of a secondary disease, saracoids or MS and others...

I've had several MRI's and a lumbar punch, the MRI showed some mass that was present, and the lumber was 'normal', when i spoke to my eye consultant Thursday she said that this was normal results for someone with MS as it can change rapidly.

end of feb this year i lost the sight in my left eye and it took a month for it to come back (This apparently was a warning to the consultants that it could be MS)

a few weeks later i had a test where they stuck probes all over my head and across my eye (that was so uncomfortable), Thursday i was told i failed that test, and that the signs were there and neurology now needed to see me, I asked if they were sure, and the consultant said yes it was MS.

That's the problem with Uvitis there is always going to be a secondary disease

Ted_Hutchinson

I do not have MS but a different inflammatory condition.
I have found the information provided by Directms.org most helpful and this has appeared to stop the annual progressive decline. However, I have recently also adopted their nutrition advice and following a similar low carb-paleo type diet has helped my weight and improved my mobility significantly.
Loren Cordain: Potential Therapeutic Characteristics of Pre-agricultural Diets in the Prevention and Treatment of Multiple Sclerosis


This talk will help you understand what is going on with MS and why their diet/supplement suggestions may help.

mr_rush

http://www.mssociety.org.uk/

Paparika

thanks i have signed up there for support

wolfehouse

i have a good friend who has ms
the ms society (in scotland at least) has some very very good resources including a club you can go to, a psychologist for anything you want to discuss and a hyperbaric chamber (they say it can help).

she has needed to adjust to different things as they came up. (hers is progressing quite slowly thankfully). she also has had to take time to adjust. I think with her she didn't really feel she was declining for about the first 10 years she knew about it.

but she has recieved a lot of help from social services (ot and home care), the community physical disabled team (physio, dietician etc) and her network of friends and family.

one of the big things that comes up with ms if fatigue so you have to learn to pace yourself and your activities, set priorities and learn to accept help where it can make your life better. everyone is different(speed of progression and coping) and everyone needs to cope in their own way and new treatments seem to crop up often.

i hope you remain optomistic.

Paparika

wolfehouse wrote: »

i have a good friend who has ms
the ms society (in scotland at least) has some very very good resources including a club you can go to, a psychologist for anything you want to discuss and a hyperbaric chamber (they say it can help).

she has needed to adjust to different things as they came up. (hers is progressing quite slowly thankfully). she also has had to take time to adjust. I think with her she didn't really feel she was declining for about the first 10 years she knew about it.

but she has recieved a lot of help from social services (ot and home care), the community physical disabled team (physio, dietician etc) and her network of friends and family.

one of the big things that comes up with ms if fatigue so you have to learn to pace yourself and your activities, set priorities and learn to accept help where it can make your life better. everyone is different(speed of progression and coping) and everyone needs to cope in their own way and new treatments seem to crop up often.

i hope you remain optomistic.

Ah yes fatigue is the biggie for me and i have suffered with that for years, perhaps this has been ms and that would mean i've had it for years!!!???

going through the fatigue atm where i work 4 hours a day, get home and sit down and i need to sleep then because i am so tired, but having a new puppy too we snuggle down on the sofa.

I have wondered if my Uvitis has been made worse by the building site outside the house, anyone who knows Bristol would of heard of 'Cabot Circus' if you have then you know where it is and where i am, yes stuck in the middle of it
which has made me wonder has this bought my ms on quicker than nature intended.

Building work 24/7 for the past 3 and a half years.

wolfehouse i hope your friend manages well

Ted_Hutchinson

Paparika wrote: »

Ah yes fatigue is the biggie for me and i have suffered with that for years, perhaps this has been ms and that would mean i've had it for years!!!???

Before I knew about Post Polio fatigue I thought MS was a possible explanation for my symptoms.

Initially correcting my Vitamin d status with 4000iu/daily made me feel a lot better but it wasn't until recently when I started eating low carb. that I lost the brain fog episodes and my energy levels improved.

Brains function much smarter on a low carb diet, see Alzheimer's and Parkinson's Diseases and take what Loren Cordain (link in previous post) says very seriously.

I made the mistake of thinking that the nutritional advice applied only to those with specific autoimmune reactions.

If I'd cottoned on earlier to the idea that a paleo style vitamin d level in paleo diet fed body was how our bodies became fine tuned to exist over 2 million years I may have saved myself an awful lot of unnecessary distress. Reading Dr McCleary's blog and understanding more about brain evolution shows the importance of following a modern shore-based/marine diet including seafood in its most general sense, non-starchy vegetables of all colors, berries, and eggs. Other sources of lean protein containing long-chain omega 3 fatty acids such as free range, grass fed, beef, chicken.

Pay particular attention to what Dr McCleary has to say about the importance of sleep and consider using melatonin. I get mine from Iherb, there is a code for $5 Iherb introductory discount in the referrals board. I used to wake up as tired as when I went to bed but now I wake feeling refreshed and raring to go.

Paparika

Ted_Hutchinson wrote: »

Before I knew about Post Polio fatigue I thought MS was a possible explanation for my symptoms.

Initially correcting my Vitamin d status with 4000iu/daily made me feel a lot better but it wasn't until recently when I started eating low carb. that I lost the brain fog episodes and my energy levels improved.

Brains function much smarter on a low carb diet, see Alzheimer's and Parkinson's Diseases and take what Loren Cordain (link in previous post) says very seriously.

I made the mistake of thinking that the nutritional advice applied only to those with specific autoimmune reactions.

If I'd cottoned on earlier to the idea that a paleo style vitamin d level in paleo diet fed body was how our bodies became fine tuned to exist over 2 million years I may have saved myself an awful lot of unnecessary distress. Reading Dr McCleary's blog and understanding more about brain evolution shows the importance of following a modern shore-based/marine diet including seafood in its most general sense, non-starchy vegetables of all colors, berries, and eggs. Other sources of lean protein containing long-chain omega 3 fatty acids such as free range, grass fed, beef, chicken.

Pay particular attention to what Dr McCleary has to say about the importance of sleep and consider using melatonin. I get mine from Iherb, there is a code for $5 Iherb introductory discount in the referrals board. I used to wake up as tired as when I went to bed but now I wake feeling refreshed and raring to go.

Thanks for the advice..

the vitamin d bit i can't do as Uvitis and cold sores mean i get outbreaks in the sun, so need to watch my vitamin d

I can't afford to pay websites for special herbs etc atm as i am a single mum to an ever growing teenager but gluten free and low carb looks like a very good start for me thank you

Ted_Hutchinson

Paparika wrote: »

Thanks for the advice..

the vitamin d bit i can't do as Uvitis and cold sores mean i get outbreaks in the sun, so need to watch my vitamin d

I can't afford to pay websites for special herbs etc atm as i am a single mum to an ever growing teenager but gluten free and low carb looks like a very good start for me thank you

As you are light sensitive and avoid sunlight then your vitamin d status will inevitably be lower than normal. But normal UK adults have less then a third of the amount of vitamin d3 their bodies need in winter and at best a half the ideal amount at the end of summer.
Ask your doctor for a 25(OH)D test and then take sufficient D3 to raise your Vitamin d status to around 125nmol/l.

zztopgirl

I hope this is ok to post but what about those with sarcoidosis who already or possibly have an excess of vitamin d. I have always wondered about this when reading about vitamin d on these boards. Is the 25(OH)D test a blood test by the way? Excuse my ignorance.

Paparika

zztopgirl wrote: »

I hope this is ok to post but what about those with sarcoidosis who already or possibly have an excess of vitamin d. I have always wondered about this when reading about vitamin d on these boards. Is the 25(OH)D test a blood test by the way? Excuse my ignorance.

ofc it's ok, I hope you get some answers