JackG: I commented on Bamfan1412's post so... - My MSAA Community

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JackG

jackgaume profile image
21 Replies

I commented on Bamfan1412's post so I thought I might introduce myself. I was diagnosed at age 65 in 2011 with MS. I continue to have flairs at least once a year. My first MRI showed I have many scars from Flair's. My latest one was in January..I was privileged to be hospitalized for this one. I am now 70. My doctor says I am an outlier as I continue on medications and continue to have Flair's. At my age most MS patients have quit having flairs and are off medication according to my doctor.. So there you have it. I'm an old man with continuing deterioration fr MS. I just got a complex power chair. My ability to walk, shower, brush teeth, etc. Are highly curtailed. The doctor wants me to spent two weeks in a rehab center.

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jackgaume
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21 Replies
Fancy1959 profile image
Fancy1959

Hey JackG, I caught you trying to sneak in a reply without ever introducing yourself. Anyway I want to again officially welcome you to this wonderful chat. Look for the additional I made post where I will see Jesus chat room. We're glad you're here and we have much we can learn from each other. You are now part of our extended family and remember that if the family sticks together we are stronger together. Fancy1959.

Bamfan1442 profile image
Bamfan1442

Welcome jackgaume and thank you for replying to my post! In addition to the SSDI (disability) application, I am in the complex and frustrating process of applying for SSI (supplemental security), unemployment and DHS for Medicaid (Which I just got my approval letter for Yaaay!!) and food assistance as well. All this with no working phone and no transportation because I can't afford it. You can read my intro for more details if you want. My head is spinning and my body is twitching on a daily basis from all this crap :-/ When I finally woke up I had several missed calls early this am from my caseworker at DHS trying to set up a phone appointment for food benefits. I can receive calls but can't call out my service got interrupted because I don't have the $40 to pay for it this month. Hoping she'll call back so I can answer I wrote the number down so I can recognize it! But in the meantime, back to these d##ned forms!! :-)

SueAB profile image
SueAB

jackgaume , Welcome! I am 89 and was diagnosed at 40. I was diagnosed with SP about 10 years ago and count my blessings that I'm told my MS is mild. If this is mild I sure feel sorry for everyone else! Hope you get the support you need at rehab and come a new man!

jimeka profile image
jimeka in reply toSueAB

Well SueAB, I take it that you have a big day coming up in October. 89, that really encourages me, sorry that you must have such pain and discomfort. How does anyone know only yourself if ms is mild. Hang in there Sue, you have made my day, blessings Jimeka 🦋 🌈 💐

SueAB profile image
SueAB in reply tojimeka

OMG - My finger hit the 8 instead of 6! Fortunately, I will be 70 not 90 in October!

jimeka profile image
jimeka in reply toSueAB

Now you have made me 😂

jackgaume profile image
jackgaume in reply tojimeka

jimeka just an FYI my birthday is 11/24/1946. someone told me to get this info to to you for the birthday list. well, I just celebrated my 40th anniversary of my 30th birthday last November.

jimeka profile image
jimeka in reply tojackgaume

Thank you jackhammer, what are your interests? Blessings Jimeka 🦋 🌈

jackgaume profile image
jackgaume in reply tojimeka

I used to like to hunt and camp. Hunting is now out for a variety of reasons foremost is the MS disability and inability to walk. Camping is getting harder but we have a travel trailer so I can have A/C I have other interests but I'll have to decide how I want to present them. Have a great day.

jimeka profile image
jimeka in reply tojackgaume

Thank you Jack, the great outdoors, 👍 🦋 🌈

jackgaume profile image
jackgaume

Thank you. I agree with your comment. I just got out of the shower and I am completely spent..

bxrmom profile image
bxrmom

jackgaume welcome to the chat, glad you introduced yourself. I am Jessie and I have had rrms since 2006 and recently switched to Tecfidera and I am doing good on it so far.

Jessie

jackgaume profile image
jackgaume in reply tobxrmom

I have been in Copaxone, and Tysabri.. I am now on Abagio. I broke through both of the other medications and developed immunity to Tysabri. I has been an eventful 5 years and it gets better and better. Not!

WAshingtongirl profile image
WAshingtongirl

It's very nice to meet you, jackgaume . I continue to be amazed at the number of people here who were diagnosed with MS 'later' in life. Is that because the disease itself is striking in the later years? Were earlier symptoms written off as something else and MS never before considered? Or has the MRI become more advanced and able to diagnose what otherwise would not have been years earlier? You also mentioned something else I've heard before: that MS 'settles down' once we hit 60 or so. Hmm...I'm not so sure I believe that anymore.

I'm sorry, I kind of followed a rabbit trail there. 😉 Anyway, welcome! We hope you visit often and allow us to get to know you better. We're a warm group of friends who like to share hugs and words of encouragement as much as we do laughs and information. We hope you feel at home, Jack!💕

jackgaume profile image
jackgaume

@tutu after my diagnosis and an explanation of symposiums, I believe I have had undiagnosed MS since at least 1982. That said there is no way to date stamp lesion scars. I have many scars on my brain and spinal column. There are more there than should be for a recent onset. Anyway that's my take.

Morllyn profile image
Morllyn

Sorry that you are still having flairs, you would have thought age would give you some benefits with this disease! Yea, just kidding about that last part.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi jackgaume Welcome to Our MSAA Community ☺ Wouldn't it be cool to be able to date stamp lesions?😁 Then l could blame my forgetfulness for longer.😅

Sorry about your relaspe's. I hope you feel better soon!

Jes🌠

ps. Don't forget to let jimeka know your birthday, for the birthday club.🎂

erash profile image
erash

Welcome jackgaume

So glad you've joined our chat room 😊

Karen-x profile image
Karen-x

Welcome Jack! Love your infectious smile. Its good to meet you and I look forward to getting to know you. You seem to have a great attitude which can only help. 😁

jackgaume profile image
jackgaume in reply toKaren-x

Karen-x infectious smile i have will infect you if i have my way. No use crying about MS it is what it is. I just do what I can and plan for fun things as I go along. I keep stitches in the doctors so I can pull their strings and push their buttons. I do be serious sometimes but i would rather not.

Raingrrl profile image
Raingrrl

Hi @Jackgaume! I too wish they could date stamp lesions! When I was diagnosed 17 years ago, my neuro said it was likely I had had M.S. for 10 years or more based on the number of lesions in my first MRI. He said, I just didn't realize it. When I thought back, it made sense.

I have been on Copaxone and Tysabri. My neuro wants to switch me to the 'new one', Ocrevus, because I'm JVC+ with a high index. I'm blessed to still mobile though i walk like a drunken sailor at times. (Especially if I get too hot!)

Its interesting that your neuro said that for most MS'ers flareups and the need for meds stop in older years. I had asked my neuro about that awhile back and it seems he isn't on board with that theory. I'm not sure why. I guess like with most things related to M.S....there are more opinions than facts.

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