For those who have had MS for 15 years or longer

[Mamabug]

Bumping this up. I re-read part of it today.

[VikingKitty]

approx 21.5 - 30 years

• How long since your MS onset (not diagnosis, but onset)? 21.5 years for sure - had ON in Mar 1995 but but possibly 30 years -- I believe I started having MS symptoms as far back as 1986 (tingling, weird random patches of goose bumps, at times would feel like the muscles around my eye would get temporarily paralyzed.
  
  
• Do you use a mobility device? None - I've been trying to get my overall health and strength back by walking on a treadmill 20 min/3x week. I've been making improvements. *I've been into fitness for the past 34 years and stay fit when I can (when fatigue or a flare isn't overtaking me) When I've come down with a virus and having a pseudo-flare, I walk pretty weak and slow. <stay away all you sick people at work! >
  
  
• Do you still have RRMS or has your dx been changed to SPMS? Still have RRMS
  
  
• Are you employed, or on SSDI? When did you go on SSDI? - Employed part-time probably could do full-time if I pushed myself but not 100% sure I could keep it up without totally wiping myself out even though it's a desk job. I go through bouts where I'm just happy to get through work and have the next day of to recoup.
  
  
• How was your Thanksgiving?? <I added this one > Lonely. Woke up wiped -out and didn't feel I had the energy to drive 18 miles one-way to participate in the family Thanksgiving...that and I would have had to drive back in the dark - I still have double vision looking certain directions from a flare in 2013 that hospitalized me for 3 days. <Double vision/nystagmus> So that's why I'm answering this post on Thanksgiving.....guess I'm not all that well!

[agate]

• How long since your MS onset (not diagnosis, but onset)? 21.5 years for sure - had ON in Mar 1995 but but possibly 30 years -- I believe I started having MS symptoms as far back as 1986 (tingling, weird random patches of goose bumps, at times would feel like the muscles around my eye would get temporarily paralyzed.
• Do you use a mobility device? None - I've been trying to get my overall health and strength back by walking on a treadmill 20 min/3x week. I've been making improvements. *I've been into fitness for the past 34 years and stay fit when I can (when fatigue or a flare isn't overtaking me) When I've come down with a virus and having a pseudo-flare, I walk pretty weak and slow. <stay away all you sick people at work! >
• Do you still have RRMS or has your dx been changed to SPMS? Still have RRMS
• Are you employed, or on SSDI? When did you go on SSDI? - Employed part-time probably could do full-time if I pushed myself but not 100% sure I could keep it up without totally wiping myself out even though it's a desk job. I go through bouts where I'm just happy to get through work and have the next day of to recoup.
• How was your Thanksgiving?? <I added this one > Lonely. Woke up wiped -out and didn't feel I had the energy to drive 18 miles one-way to participate in the family Thanksgiving...that and I would have had to drive back in the dark - I still have double vision looking certain directions from a flare in 2013 that hospitalized me for 3 days. <Double vision/nystagmus> So that's why I'm answering this post on Thanksgiving.....guess I'm not all that well!

VikingKitty, if it's any comfort to you, I couldn't take part in Thanksgiving either. Just too tiring to be in a group of people and have to get there and back, etc. Maybe Thanksgiving is a state of mind for some of us....

[Brad1138]

Great thread.

• How long since your MS onset (not diagnosis, but onset)?

In early December 1996, I suddenly developed double vision. The doctors suggested I had a brain tumor. After a night of heavy drinking on New Years' Eve, my vision miraculously resolved itself early in the morning of New Years' Day 1997. I had found the cure! Then a MRI cleared me of of any final tumor concerns but a neurologist did note that there was a possibility I had had a MS attack. No further problems until 2003-2004 when my legs began to feel stiff and I lost feeling in my left hand. In early 2006, major flu attack wiped me out and my entire left side of my body became weak. Another MRI: diagnosis MS! No real relapses since 2006; but I have developed a case of trigeminal neuralgia in the last few years. Spasticity in my legs has become worse every year sine 2006. Now I have serious difficulty walking and am a candidate for ITB. I hope to have "the test" soon.

• Do you use a mobility device? Regularly? Occasionally? What do you use?

I often use a cane outside the house. I'm limited to 100 yards or so distance. I can walk on my own but look like I'm a drunk. I'm hoping ITB can help me since my major problem is stiff and painful legs.

• Do you still have RRMS or has your dx been changed to SPMS?

My neurologist has said I'm RRMS on my way to SPMS.

• Are you employed, or on SSDI? When did you go on SSDI?

I still work full time. I have a "desk job." My mind is still reasonably clear but fatigue and my mobility issues are becoming a problem even with my job.

I went with my family to the in-laws for Thanksgiving. Had a good time but began to fade after a few hours.

[VikingKitty]

After a night of heavy drinking on New Years' Eve, my vision miraculously resolved itself early in the morning of New Years' Day 1997. I had found the cure!

If only that was the cure for MS! lol...we'd all be happy!

[kellygrn]

Don’t remember ever not having it

Summer of 1960, age 12, I was first diagnosed. Dx by being put in tub of hot water and could not get out by myself. Back then that was all they knew about MS.

I have been in a wheelchair for 23 years. While working, I sat at a desk and greeted people and answered the phone. Currently bed bound but just got a new wheelchair that has all the bells and whistles. My aide drives me around to see all the animals in the yard and at the Park.

I have had SPMS since the first MRI was taken in 1991. Insurance wouldn’t pay for drugs with that kind of MS so it was put on paper as RRMS. When I retired on disability it was changed to SPMS. I am on no med for MS.

I retired with a medical disability in 2001. Old enough now to be on Medicare.


KK

[Mamabug]

Thanks for sharing, Kelly. I'm sorry.

Life isn't fair.

[marti]

VikingKitty, if it's any comfort to you, I couldn't take part in Thanksgiving either. Just too tiring to be in a group of people and have to get there and back, etc. Maybe Thanksgiving is a state of mind for some of us....

I would LOVE to skip over the holidays!! I love my family, but having them around me for any length of time makes my anxiety creep up and I get dizzy and have palpitations. I want to see them, but I don't! Horrible of me isn't it! I don't tell them how sick it makes me feel when they come over... would never hurt them. I just hope for a good day and collapse when they are all finally gone.

[OhioKris]

Almost 15 years

Diagnosed after initial symptoms in 2002.
Dont use any assistive devices but probably should on occasion.
Still RRMS
Went on disability in 2014 after a couple bad relapses.

[howies mom]

Diagnosed 1997...onset 1979, in looking back I think I was experiencing symptoms in my teens.
Currently use wheelchair but sometimes a walker if I'm feeling energetic(or brave)
Worked full time until 2007, now on SSDI
Diagnosed with RRMS, Neuro. not saying but I believe it's now SPMS
Just finished 23 months on Tysabri and just had my first half infusion of Ocrevus 13 days ago, going for the second half tomorrow

[Mamabug]

Nice to see this thread going again. I'm always interested to read how others are doing.

[marti]

Nice to see this thread going again. I'm always interested to read how others are doing.

You are a peach Mamabug! Thanks for starting this thread.

[SandyRaleigh]

Diagnosed possible MS in 1991, undiagnosed in 2001

First odd thing occurred to me around 1990. I felt something “snap” inside my head, but there was no pain, just an echoing feeling that eventually passed. In 1991 dr said I probably either had MS or a stroke because of numb fingers and blurred vision. I asked which I should pray for and she said “definitely pray it is a stroke!”

After a lot of inconclusive tests, she diagnosed me with “probable MS.” I asked for second opinion and Kaiser Permanente said no because they were satisfied with the diagnosis. I could not afford to pay out of pocket so I assumed I had MS although dr said no treatment. Ten years later I had different insurance and saw another neurologist. He said I did not have MS but rather had UBOs (Unidentified Bright Objects) on my brain which he said can be common as we age.

Second neurologist gave me many years of fairly normal life where I did not think every little thing was MS flare. I did not think about the old MS days until recently when a Urologist asked me if I had ever been diagnosed with a neurological condition, like MS. I was shocked at the question and asked why she would ask. She diagnosed me with Neurogenic Bladder which can be associated with MS. Over the 16 years that I was free of the MS label, I remember a few things that happened that could be MS, but I chalked them up to clumsiness, age, side effect of medication, etc. I remember falling many times, I have had Nystagmus for years, my memory is not what it used to be, my temperature “range of tolerance” (heat and cool) keeps getting smaller, and fatigue is a major bother.

I have recently been taking weekly B12 shots (1,000 mcg) and have not had a fall since I started the shots. My B12 was dangerously low before shots.

I use a cane when I am tired or have to walk on any inclined surface or rocky/uneven surface. If I am going somewhere where I may have to stand for an extended period, I use a tripod cane with a seat so I can fold it open and sit whenever I need to.

I don’t like going to places where there will be a lot of people as it makes me anxious and I am fearful someone will bump into me and knock me down (balance is a big issue for me). I use a wheelchair if I must go somewhere there will be crowds. When my energy gives out, it gives out completely and immediately.

I worked until age 62 and took regular retirement. I wish I had worked a few years longer, but I was forgetting things I had done for many years and the forgetfulness and lack of energy/ability to walk even a short distance was embarrassing. Managers were not supportive and it just became too stressful to continue working.

I still drive myself anywhere I want to go, but sometimes I forget where I am going and why I am going there. I have learned that putting the destination in my GPS and write note about why I am going there is very helpful. I have a lot of reminders in my smartphone.

The local office supply store sells 3X5 notebooks that fit in my purse. Those notebooks are great for reminders-if only I can remember where I put the notebook. I am considering tying the notebook to my purse since the purse is bigger and harder to lose (although not impossible).

I don’t know for sure if it is really MS since I have not seen a neurologist in 16 years, but from what I have read on this site and others, I suspect that is what I have and I have probably had it since my initial diagnosis 26 years ago.

I stumbled upon this site when I was looking for explanation of sensation that felt like a wide belt around my abdomen. That was a new symptom last week, and just one more thing that makes me suspect MS. When I was diagnosed before, there was not much that could be done for MS, so I don’t want to go back to neurologist if he can’t really help.

I should not even bother you with my post since my history is probably far from normal.
Good luck to all on your individual but challenging journeys.

[Mamabug]

Thanks for sharing, Sandy. And welcome to MSWorld. I hope you'll explore us and keep coming back..:-)

[agate]

Hi SandyRaleigh, and welcome!

I saw your post because I had posted in this thread. I'm not here much but your post was unusual.

I hope you will find a neurologist. It sounds as if your MRI showed inconclusive white spots, and at the time the neurologist couldn't determine for sure that they were the kind of white spots that show up in MS. Another MRI might go a long way toward settling the question. Other tests, like a spinal tap, might also be requested.

There might be a treatment that would work for you if it is found that you do have MS. Or at least there will be some ways of relieving some of the symptoms. You might want to find out whether you need vitamin D3 supplementation as well.

MS is often very difficult to diagnose, and you'll find many posts here by people who waited many years before finding out they had (or didn't have) MS.

Good luck to you!