Men with MS: Hi everyone! Although I love... - My MSAA Community

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Men with MS

rlh1974 profile image

Hi everyone! Although I love talking to all of you ladies! :) Besides Allen and Bill I would very much like to talk to more men with MS. Compare notes, Talk about how this effect us men. As we all know Men are from Mars blah blah blah. But it's true when it comes to our hormones aging and how this stupid freaking blank blank blank disease affects us. That was my best Yosemite Sam impression. Doesn't really work in writing.

Anyway, I also know we don't like to talk. So at least we could PM each other and talk so it's not public. So please guys, get in touch. It would be great to hear from you. Allen has given us all great insight on this new drug.

Have a great day guys, and Ladies. Also ladies. I love you all and love to listen and lend help where I can. I don't want that to change.


23 Replies

My name is Pink. I'm 66 and just discovered I have MS 1 year ago. Don't mind talking at all

rlh1974 profile image
rlh1974 in reply to Pink-1

I will follow you, Please follow me. That way we can PM easier. Thanks!

Pink-1 profile image
Pink-1 in reply to rlh1974


Hello Rob my name is Jason I have PPMS 36 years old recently moved you know how that goes been busy nice talking to you, look forward to speaking to you in the future!, GOD BLESS!

Hello Rob my name is Jason 36 with PPMS, recently moved been busy, look forward to speaking to you in the future!

This is RobertCalifornia. I am a male and was diagnosed 4 years ago. My diagnosis is PPMS. I would welcome sharing my wonderful experiences and comparing notes. I have met lots of women and few men with MS. My neurologist told me I have a female disease. Just after she told me The increased risk of cancer from Ocrevus is for breast cancer.

that's why I am holding it off for now, SCARED

rlh1974 profile image
rlh1974 in reply to Jbahnan

Jbahnan Me too! So very scared. It is a very tough decision. If we can listen or help. Let us know! All of here on this site are here to listen and answer questions I know there are many many more intelligent and educated people on here that can help. I am a better listener!

Take care my friend!

She told me men can get breast cancer but it is rare. That is why she called MS a female disease that and 3 out of 4 MS patients are female. Her office was the first in California to do an infusion of Ocrevus. I will schedule my infusion as soon as insurance approves it. I had to switch insurance companies the first of the month.

RobertCalifornia Hey buddy, I totally understand your fear! Just remember, We are all here for you. That is why I wrote this post. Not to exclude the ladies. However, Your Dr is correct no matter how badly she phrased it. 75% more women than men get the disease. I would like to have a great ring of men to share our side with. Either privately or in a post such as this, to encourage new men to the sight that there are more of us. I wonder how many men have this stupid disease and are misdiagnosed? It is also a little shocking that in a sunny state like Cali you got this. I have seen the maps of this disease and where the biggest populations are that are diagnosed. They are 90% above the mason Dixon. Away from the most sun. Anyway, enough of my rant. Good to virtually meet you my friend. Take care. We are always here!

Born in Michigan and lived there until 16. Parents are of Swedish and Irish descent. I have always burned quickly so I stayed out of the sun in the summer.

rlh1974 Hi Rob, you are welcome to message me if there is anything you want to discuss. That way I can tell you all about the particulars of my divorce without all these women around (kidding). Seriously, I regard my divorce (except financially) as one of the few positive changes MS has brought to my life.

As far as the male perspective, men tend to pride themselves on strength & physical ability and MS without a doubt hits us hard in those areas. But when you lose strength in one area you have to develop it in another, and that's what we do. MS is not for the faint hearted.

rlh1974 profile image
rlh1974 in reply to BillD999

BillD999 hey Bill! You are so correct. Not for the faint of heart! SO much to deal with as far as loss. Myself, we are moving my bedroom and bath downstairs because I keep falling. Waiting on contractors to do work that I know I can.... Scratch that could do. Faster and better. Drives me nuts to have to bring the car into the shop. I mean have the wife bring it in. I am not allowed to drive. So yep. My pride is taking a beating on this down hill struggle. Thanks for the input. I look forward to chatting more!

Jbahnan profile image
Jbahnan in reply to rlh1974

I here u ROB, recently got into a car accident bec of my MS, cant drive anymore.

Hi Rob, I wasn't DX'd until May, 2012 but looking back I had my first symptom my Freshman year in high school after the first hot baseball practice of the year! The left side of my body started tingling heavily, burning, pins and needles and then it went numb. This lasted an hour but I had residual sensation loss and minor weakness the next day, never went to the Dr though, I had a fluke back injury at 20 while working at a tire store, missed 5 years of work including recovery time after the 9th Dr found the 3 bulging disks. Two rubbing the cord and one on a nerve(t-5,6,7). One Dr thought he saw a lesion on the low cord as did my ms Neuro! I had another weird back injury at work in 2001(29yrs) that required a L4-S1 fusion. Then I got staph infections, took 2yrs. To heal from that mess! While doing ok I started going backwards again, I had things showing up that was blamed on failed back surgery. Workers comp sent me to a live in therapy/Work hardening program that was killing me! Some other guys asked if I wanted to go hot rubbing with them so I was game. After ten minutes I didn't feel good so went to get out and I was paralyzed, my legs were worthless!! I sat on the edge for a minute to cool off in the 45° temp,then the guys helped me to a chair where I cooled off for 20 minutes. My room was next to one of the other clients, he helped me back with aid of my cane! This was blamed on the work hardening, I was soon released but they told workers comp I quit! That was 2006, 2008 L3-4 laminectomy and port job around the nerves. 2 spine trials I got stuck paying for out of pocket in 2009! They extremely aggregated my nerves and the burning in my feet. I got the ball rolling on my long journey to MS DX!


Kevin_McMillan you sound as bad as me! Years and years of "other things" failed back and neck fusions. Unwarranted surgeries that were because of the ms. One of my first symptoms basically stripping down as far as legally possible in the Walmart from heat. In the middle of the winter. We will have to talk Kevin! Good to hear from you.

Take care,


Wow Rob, we have some things in common don't we, the part about Wal-Mart is funny but I can relate! Kind of sad too if you really think about it! We will have to talk, if I remember right we are pretty close in age?! Is your Dad a Vietnam veteran by chance? My Dad was and had service connected Multiple Myeloma from agent Orange and some other effects we noticed too! I believe that is where I got my MS, my older brother(twin by 7 min.) Got chemical poisening and now he has multiple myeloma but I think he has ms too! He has the same vision trouble and a lot of the other symptoms he's 5 years behind me! Our older sister has ADD and other learning disabilities, anxiety and depression but is doing well on meds. My son has ADHD, Celiac and digestive/constipation(chronic) problems. They have followed Agent O 7 Generations, to today!


Kevin_McMillan my dad tried to go in the Navy. Hoenest to god, he had flat feet and was deaf in one ear. So disqualification from all branches of service. Behind him on both sides, family history is sketchy at best. I do know all men on both sides severed. I went in when I was17 went through basic, went to ranger school. Then got diabetes. Again, see yah kid! Your out of the military. I suffer from ADHD, Diabetes , and MS. Only sick kid in the family. Other than my crazy ass sister. Sorry about the language. But there are no other words. I also have had, without my 15 surgeries 480 stitches and staples. As my wife says. I am a hot mess.


Wow, Rob I'm sorry! Diabetic on top of it!! We're you in Desert storm? Sound like you quite accomplished in the service, Thank you for that! Three of my friends just retired, One from Army and 2 from Air Force! Our county has the highest number of Vietnam veterans per capita, the highest MS, ALS, Cancer, especially Multiple Myeloma, in the US! We have the worst neurology in the is too! My Dad and his 2 brothers were drafted and all 3 suffer/ed from Agent Orange poisoning, the middle brother is still alive. Let's hope they keep making medical break through! Get us healed up to a better quality of life!

Kevin_McMillan I never actually had the chance to serv. All happened on delayed entry before I was 18. I would rather not talk about the details in public. I am sorry. Feel free to message me. A lot of it hurts

rlh 1974 I'm really sorry, I didn't mean to bring up something so painful, we don't have to talk about it.

Oh, No issues my friend. There are somethings I don't talk about, especially in public. I need to be better at changing the subject. I specifically don't like to be thanked for something I did not do. Too many men and women have and deserve it. As you already know, That's all. I take o offense and need no apologies!

Take care my friend.

I haven't had a chance to read to other relies yet. I be male 59 dx 2007 with RRMS but was SPMS. I'm up to talking. in a few days. Just popped up here for a quick look and saw your post for more male contact. Just remember the song, with the lyrics "...what doesn't kill you, makes you stronger..." and it sure does. Ya'all be at peace and know the fear does not need to conquer you. It is okay to have fear, that is natural, letting it get the best of you is not.

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