Late on-set Multiple Sclerosis

Hi,
I'm so sorry to hear about you having multiple sclerosis! That's terrible! I know nothing about it except it's a bad thing to have but I would suggest that you do a Google or any search engine search for it to find out exactly what is involved with it. Also do a search to see if any special foods work better with it and what nutrients it takes from your body so you can eat more of the foods that it may take out, if there are any.

The other thing you can do is pray and pray fervently! God is there for you. He made you and he can fix you! You need a miracle! I will say a prayer for you.
God bless you!
PML

Welcome @gratetful32, I added your discussion to the Brain & Nervous System support group where you can connect with several members talking about MS, like @seanmay23 @nightops @tabuschlen @hrhwilliam @kathl @lemartin417 and many others.

You may also be interested in these MS-related discussions:
- Multiple Sclerosis (MS) - please introduce yourself
https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/
See all: https://connect.mayoclinic.org/search/discussions/?search=Multiple%20Sclerosis

Being newly diagnosed with multiple sclerosis is scary. I understand your concern. But you're not alone. Do you have a good neurologist? What have you found to help your mobility?

Sorry to hear about your experience so far. My issues have largely been sensory related. I was diagnosed almost 2 years ago, and even with minor symptoms it was a significant adjustment (mentally). That said, I have minimal experience with motor function deficit due to MS - but it is my understanding that PONS devices can help with this. That being said, biggest adjustments that I can truly say have been beneficial are:
Consistent sleep schedule
Positive mindset
Better diet/approach to food (veggies - especially raw, then fruit - especially black and blue, minimize gluten/corn/processed sugars, reasonable portions of higher quality meats - with an emphasis on reducing processed meats, and increasing frequency of fish with good omega-3 content)
Regular exercise and outdoor time
“Grounding” - getting bare feet onto bare earth/sand

My wife has had MS for a number of years being diagnosed over perhaps a five year span. She fights it every day, doing what she can when she can. If she can climb a hill, she will try. If she can't get out of the car, then she won't try. MS is strange in that it affects everyone differently, naturally because different parts of the brain or brain stem are damaged in all MS patients. It seems she can work her way around something if something is misfiring or not working. Ten minutes later all is more or less fine. She has trouble regulating body temperature, cannot be outside in the heat or she goes weak within minutes. There are times she cannot talk or she gets words mixed up. We laugh else we would certainly cry.
It is very hard to explain MS to someone who doesn't have MS. My wife says "you don't get it until you get it." You understand what is going on but people say you "look" fine. It's OK for people to be stupid I guess.
You get up in the morning with a pocket half full of pennies. Every thing you do costs you pennies. you brush your teeth, pennies. You get dressed, pennies. You walk outside to the mail box, pennies. Eventually you run out of pennies and that's it for the day. Maybe a nap at ten in the morning might get you a couple of pennies back but you never have enough pennies to get you through a normal day. You are exhausted, weak, worn out, but hey, you look fine. It's a hard adjustment. Fight every chance you get. Figure out ways to do normal things. If you need a wheelchair, maybe you just need one for an hour or two when you can get back up and walk again.
My wife has never given up. She cannot work a normal job because she never knows when the failure light will come on. But she has lived twenty years like this, fighting almost every day, taking trips, working the garden before the sun comes up, hugging the grocery cart for balance whilst shopping, crying when she wants to. It's all part of MS. No one enjoys this disease. No one wants this disease. As she says, "Life is what happens when you are making other plans."
Do the best you can. Reach out any time you need to. Life is never fair but tough people make it work.
Sorry to ramble on. You can do this.

Hi William, thank you so much for the way you explained MS. I have had MS for about 15 years. I have a sister who is a nurse and she still cannot understand what it's like to have this disease. When I see her I'm going to show her your description. It is so true. It's like pennies in your pocket. Once they're gone they're gone. The only one that seems to understand is my son. It's very difficult not having a thermostat in your body. My sisters do not understand that I was ill for about 8 weeks and was staying at one of my sisters and she made me go out in the 90° weather to have a walk. I couldn't get her to understand that it was too hot. Not that I didn't want to walk but 90° weather for somebody with MS and no thermostat is very uncomfortable. She kept telling me pour water on me. It would help. I think by the time the I ate 8 weeks was up. She was finally starting to understand. On top of having the MS I did have about of shingles which was very debilitating and I still have problems. That's why I was at my sister's for 8 weeks. It's really great to see that somebody does understand what happens when you have MS. I hope your wife has better days. That's all we can hope for. And take it 2 minutes at a time if that's all we can do. 🙂

Dear @grateful32 so sorry to hear about the diagnosis but as others have said you can do it with lifestyle/sleep hygiene etc and keeping stress to the minimum. Can I ask what your early symptoms have been? How did it progress etc. I have been getting early MS symptoms but the neurologist has discharged me saying I have a very healthy nervous system. I have spasms all over, nerve pain, numbness in hands and feet, pins and needles, burning in my feet, buzzing at the back of my neck, electric pulsing in my stomach and back etc. It comes in and out like a pattern. Every month goes away for a week or so then the spasms come back and I can’t sleep etc. Thank you so much in advance. Lots of love and best wishes on this journey. Xx

No Google searches!!! Talk to your doctor and join a local support group. Call your hospital who have community resources to meet with with other LOMS.

Hi,
I'm curious as to how late this onset is. I have symptoms of MS but have also been diagnosed with ANS. As MS is a neuropathy and both my older sister and brother died from MS I'm a little concerned for myself. I also have 4 other related family members with MS making me a good candidate for it. Most Dr's laugh at me until they cop an earfull of the family history with MS, but none have botherd to take action, yet.
Cheers