How do did you Handel all the new problems and limitations. Specifically MS all the random come and go out of nowhere things. Today its fatigue, weak and pins and needles in legs and feet, o and I fell again hoped out of the back of the truck to open the gate and legs gave out when I hit the ground (going to feel that tomorrow) . Shortly after that I caught myself standing on the side of the truck bed trying to look on top of the horse stalls in the barn for some hunting gear. I caught myself that time knowing I should not be doing that and got down.

So how did you rember to watch yourself. Unless im having a really bad day and even then I forget I can't do what I used to until im hitting the ground.

Eash Ms case is different becuse everyone's damage is in different spots.

My issue are Heavy, not working as expecting legs, Drop foot, pins and needles/ tingling in feet, vertigo, loss of balance, studder, can't find words, cognitive difficulties with complex things, heat and cold sensitivity, slight Hands tremor, and fatigue Get tired very fast. Probably more im forgetting.

Im out of denial like I have been in the last 5 years, now its learing how to accept This is my new normal, I won't get beter only worse and learning to rember and work with the limitations. On the bad days its easy to rember to watch out but good days when I forget and then something hits it is frustrating and can be dangerous.

Here it is 2nd day of gun season and geting a single deer cut up has me wiped out ready for a nap instead of going out to sit in the woods .

Anyone have Ms if so what were some things that work for you. And not just Ms but any others with conditions that limited you doing things.

Welcome to my world

I'm different than most, do enough doctors already

I struggle, fall, and and fail daily, but my stubborn attitude keeps me moving

Slow by all means, real slow some days, but it works for me

I don't have MS I have type of MD which no pills for. Left leg becoming increasly weaker. I dont fall unless I put myself in a situation where I can't catch my balance. Most the time that's backing up. So how does one deal with it. Im still learning. Don't like it one bit. Im someone who used to literally jump into my pants. Now I have to lean on something and csnt feel my foot in pants leg.
Sucks that I now got long list of Used Tos. Gotta do what you can when you can.
Im open t o ideas too.

Mac

I did a ramp, main entry, and bathroom for one.
And a house for another.

You know those snobs that whine at every chance?
That's not them.
Thanks for reminder I need to do better.

Some of the syptoms you describe are similar to End Stage Kiidney Failure. There is no cure only treatment, and a lot of what you say fatigue, just can't go like used to and when I hit the wall there is no kick or anything left. Pain can really be severe. I am planning up a set ot leg braces so I can still work and stand upright at the bench. Some days there is nothing, I learned not to fight it, rest helps too.I just figure adapt as I need to still enjoy my life as I can

Ok knew I was not the only one having some issues. How do you get past feeling useless when your not geting things things done. Its Just not natural for me to not be moving and working on something. My logical brain says everything I read says rest is important, BUT everything in me says push through dont wast any of your day taking a nap. Get the most out of your days off. So I don't try to take a nap but still get nothing done being sluggish and of course like the DOC pointed out at that point symptoms get worse when tired, stressed, and hot.



AND DONT READ SIDE EFFECTS. I just made that mistake. Liver failure, Plm risk that causes the same symptoms as ms but can kill you quickly. Is the risk of the meds worth the benefit!!!

Side note my oldest saw a buck tonight about the size he killed and a much larger one walking out right where I would have sat this evening. So its good I stayed in I was not tempted to shoot it. I dont fell like messing with another one tonight.
.

https://www.healthline.com/health/symptoms-of-lyme-disease-and-ms
It seems pretty rare for people in there 30s and older to get ms

My wife has MS. (Diagnosed in 1995)

She deals with the leg heaviness, foot/lower leg numbness, falling, cognitive issues, leg spasm's.


Had to quit nursing because of the cognitive issues.

She's on aubagio for her MS. She also has her medical MJ card for night time leg spasms.

She's tried every pill, shot, infusion for it. The infusions made her sick for days/weeks on end.

The shots gave her a horrible rash. She would wear shorts.

She also has a lot of skin sensitivities. There are times I'll give her a hug and you'd swear I was killing her.

She just keeps plodding along.

She does word puzzles and is constantly reading to keep her mind working.

I had lime test done Maybe twice Its been a few years. MRI's show classic MS confirmed with the new MRIs back in October. The white spots are not supposed to be there. They have grown and gotten new ones over time. I wish it was as simple as Lyme

She ever take KESIMPTA That's what they want me to start. Its the shots in legs May be what gave her rashes i read that on the side effect list. There may be other that are administered by shots im not sure.

I was worried about the pills being harder on liver. And the shots and infusions being in your system for 30 days on shots and 6 months on infusions if I have a reaction it would be worse waiting to get it out of my system..

I hate to hear she is having so much trouble. im Lucky most of the time I get by and no one would notice. After talking more with my neurologist I realized a lot of things in have been making excuses for are really ms . Im not just geting clumsy, I didnt jus trip over that rock. My leg didnt pick up like it should have for example.

The brain fog, stuttering, And not able to get words out may be the worst as far as geting frustrated. But the random way thing hit unexpectedly. Sudden loss of balance walking sideways lookin like a drunk.


I suspect it will get easier to deal with im just now out of denial and willing to admit I have MS.

No it was beta seron that gave her the rashes.

She went into disability kicking and screaming.

She had Avonex first
Then Beta Seron.
The tried ocrevus infusion. Made her sick.
Then aubagio
Then tried plegrady. Got really sick on that
Now she's back on Aubagio.
She's also on Ampyra for her leg weakness and walking.
Baclafin for her spasms, plus MMJ.

The thing with her falling is she does so gracefully.

Usually it's just a tip over and boom.

She'll go down and people who know her will just go "man down".

It does get me some dirty looks from people who don't know her. Especially since I'm only there to help push her a chair or something to help her get up, but don't actually try to help her. She gets up fairly well on her own. She is afraid of someone hurting her or themselves if the try to lift her up.

She says if you need a cane or anything like that to get an actual prescription from your MD for the device, so that if you ever need to go to for disability you'll be ahead of the game. MS is an automatic qualifier (atleast in PA) for a handicapped placard for your vehicle.

you're still operating heavy equipment??

My MRI’s arent good-diagnosed 5.5 years ago at the start of the vid. Both neurologists ive had said “moderately severe”. They dont count my brain lesions, just say “greater than 20”. About another dozen on so on my spine. So as a gesture to say F off, I bought a high speed shorthair and put miles on chasing birds. When my legs fail, which they will and do, I just keep going, only slower. It’s like draggin sandbags on my ankles and it just happens when theyve had enough. Oddly enough, im as strong as Ive ever been and throw around pretty heavy kettlebells regularly. If i had lost strength, id be a lot worse off mentally. Balance sucks at times though and I get foot drop bad, especially on one side when Im tired. The other day I was on a zoom conference call and word salad came out. I couldnt formulate English words. Thats not that fun when your kinda trying to hide that part of things. Insomnia is sporadic but it gets me about once a week where I dont sleep at all. Now I see that melatonin causes heart failure-awesome. Heat is my absolute enemy. I will be doing things in the heat and it’s like a switch is flipped. Body goes numb, feet drag, immediately tired. Summer sucks. On top of everything, I hurt most days in multiple places. I have no idea if thats just being 43 or if its this.

On the plus side, they claim I have no new lesions but like i said, they dont even count the brain lesions so who knows. I trust about 40 percent of what these doctors claim. Look into high dosing vitamin D and testosterone treatment-both of which claim to reverse damage. The neurologists claim that isnt possible and lectured me about vit D overdose, but theyre also the ones pumping 100k worth of meds into me a year along with mri’s and dr visits. For the first few years of infusions, I got sick about once a month and even got shingles. Immune system was gone. LOTS better the last couple years. Like I said, dont put your faith into these people too much and do your own research. Theyre bought and paid for by big pharma. They get paid to be obedient.

Would seem to be a safety issue that no company would want to be liable for. Hope you are able to find a treatment that will alleviate some of the symptoms. Eric

maybe I'm remembering incorrectly, but doesn't he operate an industrial crane in an aluminum smelting plant?

DWC, Heat is a real killer for my wife too.

We went to Sturgis a few years ago. When we went downtown for the festivities she lasted about 4 hours, then we had to get into the air conditioning. We got on the bike and for the first time ever she went lidless to get the air to cool her down. We went to Full Throttle and her was dumping water over her head and using ice cubes in her shirt to help cool herself down. We got back to the house about 8 pm and she went straight into the bedroom and slept with the air on high and 2 fans on her. It was like living in the arctic.

Don, my wife still operates a motor vehicle and other assorted equipment. She just has to pay closer attention to what her feet and legs are doing, or not doing.

Lyme isn't that easy.
I had the same type of lesions that you're showing there, the reg. MDs kept saying MS thank God a neurologist told me to keep searching I was in my mid 40s then he said I was to old then to get MS anyway yes Lyme disease lesions mimic MS and lots of other diseases. But wherever you came up with Lyme disease is easy, then someone has lied to you.

I don't doubt you, Kevin.

but that's a far cry from operating an overhead crane in an industrial setting...for fifteen hour shifts.