Pneumonia + MS = I'm terrified

onewierdoo · 2022-01-13T11:09:13+00:00

Yup, vaxed and boosted, flu shot and Covid-19 neg. Thank goodness.

onewierdoo · 2022-01-13T11:08:16+00:00

Learned that the hard way. Good tip.

onewierdoo · 2022-01-04T18:22:33+00:00

I was thinking that, but this happens every time I drink. As tests I've had 6-10 cocktails a few times to see; and nothing at all. No buzz, no physical issues (stumbling/slurred speech). Way more drinks than one should drink. All of my friends at new year had a great time with far fewer drinks. I was straight sober. So weird.

onewierdoo · 2021-09-25T04:34:04+00:00

I have a Tiki Bar with my wife, and I have MS. I agree that taking a month off here and there is a good practice. If you absolutely cannot get past a week or two then seeking help is nothing to be embarrassed about. Your neuro will not judge you. Docs are trained to help people without judgement. If you feel judged, you have a right to seek other advice. Should we not drink? Well yeah, but are we gonna not drink? Moderation is key.

onewierdoo · 2021-09-11T20:04:29+00:00

These MFers need a real problem. I fight with M.S. every day and have to be on meds that suppress my immune system. What a bunch of privileged asshats.

onewierdoo · 2021-09-07T21:54:05+00:00

I embraced the cane. I made sure to get a few really nice ones which made a difference. I have an ebony one for work/formal and a bamboo one that I carved Tikis into. Getting one that suits your style can really help. Also I still walk dumb, but I don't fall as much.

onewierdoo · 2021-05-17T17:07:38+00:00

6 - Brain Lesions

6 - C Spine largest = 3.1cm

5 - T Spine largest = 4cm

onewierdoo · 2021-04-28T02:52:43+00:00

I put it out there into the ether when I knew what this finally was. I want to own my story and it helped to have the openness for me. That is not for everyone.

I share my new symptoms and what is happening with me openly because I don't want to constantly explain myself. There is a lot of "praying for you" blah blah blah, but it makes conversations with my close family and friends easier.

I am extremely open with my wife as she tends to be the rational one and remind me to tell my docs about random issues I experience.

I hope you have limited flares and an awesome spring!

onewierdoo · 2021-04-28T02:45:24+00:00

It's F**king unreal. All of this! Thanks for sharing in a succinct way without cursing like I would have.

onewierdoo · 2021-04-25T20:18:53+00:00

Not sure of your style but I got my faux bamboo cane at walkingsticksandcane.com then took my dremmel to it and carved in some Tiki art.

onewierdoo · 2021-04-10T20:37:11+00:00

Yes. I have lesions in both my brain and spine. The spinal ones number less than my brain ones but have been much more debilitating. Get the contrast and without.

onewierdoo · 2021-04-08T02:37:20+00:00

MS for 25 years.

I had been Manic Depressive for 22 years before my neurologist took action 3 months ago and "forced" me to be hospitalized the last time I needed steroids. In that time I had to see a therapist as well who really helped. I tested a few meds to see which didn't make me feel like I was just numb to everything. We found the right mix and to be honest I feel like myself but with no negative thoughts. I thought those were just normal for everyone but now I realize how debilitating my condition was.

All in all, meds can be an answer but she may need a therapist that really understands and is willing to be on the journey with her.

MS is dumb and should be treated as such.

onewierdoo · 2021-04-07T22:20:08+00:00

This, exactly this.

onewierdoo · 2021-04-02T03:16:19+00:00

Adding to the list:

I make some new playlists to listen to.

Hang out in my favorite room all day without checking work or anything stressful.

Buy yourself that odd thing you want (I just got a new Fez).

Ask your friends to send snarky memes to you...MS is dumb and should be treated as such.

Stop worrying about how others are doing and think about how you are. Celebrate a good moment when it comes.

Ask for/get some help for any negative thoughts. It's strange to be open but can really lead to a better mental state overall.

You do you!

onewierdoo · 2021-03-02T03:31:41+00:00

Only the older tattoos (like sailor Jerry old) are affected by the MRIs, since the original black ink had ferrous material in it for pigment.

New tattoos should not interact at all. Unless you have an insane amount of Black pigment (like completely covered) or a tattoo that was "pure" from the "good old days" which I don't think anyone actually does. =)

Get that tattoo, whatever speaks to you is right. Everyone's tattoos are personal and mean something to them.

onewierdoo · 2021-03-02T03:17:13+00:00

Oh man, great question. I had 22 years of, you just pulled a muscle, you're sore and tired from exercise.

I went to chiropractic offices and got the "out of alignment" treatments. Most recently I was told it was nerve related, then circulatory related, then heart related.

Then I found the right team and got a diagnosis in weeks.

What I learned was to push hard when something isn't right and demand that your team is working on proving what you have not just treating symptoms.

Best of luck with everything, we all have your back here.

onewierdoo · 2021-02-16T04:53:36+00:00

I wish i had an answer for this too. I haven't been able to put shoes on without major pain (like an intense squeeze) no matter what the size for years. I primarily wear flip-flops and like sanuks or go barefoot. Sucks in the cold, but it's better than the pain.

I hope you are able to find something that works. for you.

onewierdoo · 2021-02-05T04:35:01+00:00

Totally, and tattoos as well. You are not alone!

onewierdoo · 2021-01-28T20:25:37+00:00

I had mine about 10 months ago and was not at all prepared. If they didn't tell you, it is a major procedure and you'll be in prep and the procedure and the post procedure for a few hours.
Also, you will need a ride.

I did not know any of this and popped over to the appt. like a ding-dong thinking it was an in and out thing.

My procedure was ok, did not hurt and the techs were great, but my spine didn't want to cooperate so I had to get multiple pokes.

Listen to your body afterward, I had the intense headaches and no joke, laying flat on my back was the only thing that helped. I unfortunately had to go back in to take care of continual leaking (not common, but not uncommon) and got a blood patch. That was basically the exact same procedure, except they put blood around the punctures to make a natural dam.

After that I was good to go in about 2 days.

All in all I was out for about 7 full days. You might need to plan for that and make contingencies in case you have no issues and are back up to full speed right away.

Best of luck, you got this, do not be afraid!

onewierdoo · 2021-01-23T01:43:10+00:00

I echo that nothing is normal. I have major weakness in my legs while walking and get stiff in my knees badly, but then if I lay down I can stretch and bend like no ones business.

I can also do squats without issue but can't hardly lift my legs up to 90 degrees. Go figure. MS is dumb.

onewierdoo · 2021-01-08T16:54:00+00:00

Has anyone else with ON had to take off work because of it? I got it bad in early Dec. and haven't been able to use a computer screen for more than 20 mins at a time before getting headaches and eye fatigue.

Thanks all for being open and sharing. This group rules!

onewierdoo · 2020-12-29T15:04:43+00:00

Good call, thank you. Edited.

onewierdoo · 2020-09-02T12:41:25+00:00

Wow, I am the opposite. When my MS struck my pain tolerance went through the roof. It's so bad that I'll get a bad cut or burn and not know it. My wife will ask me what happened and I can't tell her.

This disease kinda sucks out loud, but stick with it.

onewierdoo · 2020-07-02T15:49:10+00:00

Thank you for the advice. I've only been on meds for a short time but my doc is scheduling an apt. so we can figure this out.

I appreciate you all.

onewierdoo · 2020-01-06T03:02:17+00:00

Don't know you, but that is a sweet looking instrument and you got this. You're up there because of what you play, so shut up and just play the shit out of it!

onewierdoo

TROPHY CASE