Undiagnosed for decades

[TeeKay408]

It took me twelve years to take my multiple sclerosis seriously. The only treatment for MS is to catch it early, and it looks like I have had it for decades without knowing.

Back in 2011, a random urgent care doc suggested that my weird muscle spasms might be due to MS. Medha and I laughed him off as a nut. After all, MS predominantly strikes women in their 30s, not men in their 50s.

I think I have seen maybe 15 neurologists since then, no kidding, and not one recognized that I had MS.

Physically, my MS symptoms are mild. But I haven't known what day it was for over a decade, but I shrugged it off. I started noticing memory problems six years ago. Then at times my brain would lock up and I couldn't grasp things at all. I lost the abilty to focus and accomplish tasks. I had to ask employers for accomodations, because things would biunce off my brain. I started recording every meeting and important conversations. I own an airplane but quit flying four years ago because I couldnt remember what the tower just told me. Now that I dont work, I can't teĺl weekdays from weekends. Many doctord tried to treat memory and sleep problems, but none suspected MS.

There was plenty of medical ineptitude. A goofy neuropsychologist botched a formal memory and cognition test 14 months ago. There was even a fruitcake neurologist who noted white spots on my MRI, but didn't realize they were due to MS!!

I demanded a redo of the botched memory test, and it took my insurance company 8 months to do that. My inability to plan, track, and complete tasks didn't help. In the meantime, a memory doctor (or maybe a sleep doctor) ordered an MS-specific MRI, which seemed weird and out of the blue, and still I didn't believe I had MS. The MRI said I *might* have MS, but I shrugged it off.

Finally, day-long memory and cognition testing was finally re-done properly, and that also suggested I *might* have MS.

While in India I saw 4 neurologists. None of them realized I had MS. At my insistence I got a VEP which suggested lesions on my optic nerves, but that only got a shrug.

Then last month a spinal tap found some specific gunk in my spinal fluid, which proved conclusively that I have multiple sclerosis.

Even today there are people who are pivotal to my life that do not take my life-altering MS symptoms seriously. But hey, it took me twelve years to believe it.

[To be clear, I am the luckiest guy in the world. My physical symptoms have been mild. My life has been wonderful, better than anyone could have expected. I have been in crashes that totalled three motorcycles and never broke a bone. I have lived in 8 US states, and have visited more than a dozen countries. I am so grateful to have been born with a good brain and raised by good people. I am thankful to have been able to accomplish things I could have never imagined. I have been fortunate to know so many wonderful people who made me a better person. And I so grateful to have enjoyed more than a decade in love with the most impressive person I've ever met. I have been fortunate beyond words, and having MS will never change that.]

[Sandydemop]

hey TK, that you found the love of your life and MS is not going to change that is a very inspiring message. Many neurologists botch the diagnosis. You are not alone. Keep sharing. some speech therapists and cognitive therapists work with memory issues.

[leking1]

Very good message, TK! I was Diagnosed 43 years ago, and after the first year, which was pretty awful, I wised up and started doing things to help myself! I helped me so much, that I convinced myself that all those Neurologists in NC, Tenn., and swVA that I had seen were so wrong! I didn't have MS at all, or if I had it, it was now gone! Normally, I would consider myself a reasonably intelligent person, if somewhat right brained, but in this issue, I IGNORED ALL THE FACTS, and went with what I wanted to believe. It lasted until I moved to Florida, and mowed my grass for the first time! I had chosen a PCP when I first arrived at work, but didn't bother with any specialists....I wouldn't need any of those! I got to my Dr.'s office and he took one look at me and said" Linda, what can I do for you?" and I answered, "You can refer me to a Neurologist who can treat my MS". He not only did that, he called her to see if she had any time to see me that day, and made the appt. for me for later that day. I had my first MRI in 6 or 7 years in a couple of days, and a regular appt. with my new Neurologist. He was the first Dr. I ever had who actually showed me how to read a MRI! He immediately took the wind out of my sails, when he pointed out that during those years when I thought there was no MS activity, I had accumulated over 200 NEW lesions. I kept both Dr's for all the time I lived there.

[TeeKay408 in reply to leking1]

Wow, I really enjoyed reading your history. Well, enjoyed is the wrong word, but I was grateful to get somebody else's perspective. Literally nobody I know can connect with my MS symptoms, so it's nice to hear from people like me here.

[Fancy59 CommunityAmbassador]

TeeKay408, welcome to our family here at the MSAA chat room.You're a saga sounds familiar to many of us with MS. I was diagnosed 9 years ago but at the time they thought I'd had MS for 10 to 15 years based on the number of lesions I had on my spinal cord and in my brain. Looking back I had numerous symptoms that were most likely associated with MS but I continually passed them off as part of aging. You have a great attitude and that is 2/3 of the battle with MS so keep it up. I look forward to getting to know you better. I'm certain there is much we can learn from each other. Try finding a university teaching school in your part of the country and find a Neurologist that specializes in MS and hopefully your treatment will be up to par. Fancy59.

[TeeKay408 in reply to Fancy59]

Good point. I also shrugged off my MS warning signs as aging. I am older than my wife. I am the oldest child, and all my older relatives are gone. So I am a little disconnected from (or in denial ☺️ of) the aging process. I didn't realize that my strange symptoms were MS and not aging.

Thanks for your good advice, Fancy59!

[greaterexp]

Wow! Through all that, you have a remarkable attitude! Thank you for sharing your story.

[Robsmom]

Wow, you have been through a lot and have a great attitude. I was 54 when diagnosed and had mostly vision and cognitive problems. I do have walking and other physical issues now but I always tell people that I'm Blessed too. I got to live my younger years without any problems and doing what I wanted in life without the fear of what's going to happen next with MS.

[Dan_NY]

You sound similar to me in regard to your symptoms and memory issues. Its quite scary actually to me as I am only getting worse. I quit flying as well many years ago due to similar reasons. (Flew out of OAK some). Thanks for the uplifting post and reminder of "Positivity Bias", loosely meant as finding the silver lining in all things.

[TeeKay408 in reply to Dan_NY]

What were you flying, Dan? I was flying a small Cessna out of RHV in San Jose.

In retrospect I realize there were so many airplane-related MS cognitive symptoms. For example, I imagined inventing an aircraft radio that could play back the last ten seconds, because I kept forgetting my landing clearance. 🙄☺️

I am also blaming MS for the engine failure I had in 2019. (It was poor judgement to fly 300 hours past the maximum TBO, duh.) I lost two of four cylinders 11 miles from my airport. The airframe was shaking so badly I thought the motor would tear clean off and I would have to ride the biggest piece to the ground. 😊 The whole way back I kept looking for places to ditch if the engine died completely. I limped back to my airport, then threw on 40 degree flaps, and screamed straight down to the runway. No go around possible. The engine quit for good when I pulled onto the taxiway. I had to push the aircraft back to the hangar.

What finally grounded me was that I couldnt complete my annual inspection like previous years. Let's call that MS-related trouble with task completion. ☺️

I sold the Cessna to my aircraft mechanic a few weeks ago. I loved all those years at the airport. My wife and I had so many great flying memories. No regrets at all. 👍🏾

[Dan_NY in reply to TeeKay408]

I flew a C150 mostly and a 152 a few times. This was my main strip. airnav.com/airport/NK74 . A few times I nearly ran into deer. Once even a flock of geese got real real close. I had to do a few go arounds. I did my night landings though at OAK. It was amazing. Sept/Oct as I recall and a wonderful full moon. Clear night with no wind. I greased all my landings. Picture San Francisco Bay on your left.. The lights of San Fran beyond the water. On your right the lights of Oakland and the Oakland hills. All this illuminated with a larger and brighter than normal full moon. This is one memory I wont forget. I wont let myself.

One day I was flying into a C airport I think it was (Tower with no radar) and made a very large blunder on approach. A small commuter plane was on the correct approach. If I would have been about a minute or so earlier I don't think I would be typing this. I made some math errors a couple times and my headings were not correct. It began to feel that flying was not something I should continue. I was planning to get a Mooney and have some fun but that didnt seem like a smart thing. So I essentially grounded myself. Soon after it became fairly difficult if not impossible even if I wanted to fly due to physical deterioration.

I cant imagine having to ditch around San Jose. That is crazy. Glad the engine kept it together long enough..

[TeeKay408 in reply to Dan_NY]

Im sorry it took me so long to respond to your great message.

Before I start, I wanted to tell you what happened to me. While I was selling my airplane, I met a guy whose uncle has MS. He said I could go flying with him any time. Maybe you have pilots near you?

I loved reading your message! Aurora, NY, just south of lake ontario? That must have been a wonderful little airport. Go arounds due to deer? Cool. Well, at least they can't pop out of a ditch the way they do on coutry roads. Sounds picturesque. Except for dodging flocks of canada geese. 😁 Sounds like a sweet little airport.

Your night landings at OAK sound dreamy. That area is already wonderful, but under a big full moon? Wow. My night landings were all at my small local airport, RHV. The entire field was deserted, nobody in the tower. Had to click the mic 5 times to turn on the runway lights. So very opposite from you. I had forgotten my night landings. Thanks for the reminder.

(What I now realize was) MS didnt cause any big flying problems. I once nearly picked the wrong parallel runway in use, but I relized it. The tower was always very helpful. I doubt I was the only older dude with memory problems. 😀

Fun memories. Some people wait to do things until they retire. If I did that, MS would have spoiled my plans. So I can only be grateful that I got to do so much.

Theres nothing like showing up before the tower opens, and having the air completely to myself, calling out my turns to a silent radio. It was one of huge highlights of my life, so I can only be grateful I was so fortunate to do it.

[Mollyabigail]

Welcome TeeKay! Let's talk about medical ineptitude! I live in rural Mississippi! It is all around me! 😅 Don't get me started! My son is a commercial pilot, by the way. Glad you are here!

[BlanketTime1]

welcome and thank you for sharing your story with us.🤗

[kdali]

Welcome! I had a dumb 15yrs of shrugging off issues, by myself and my providers. Sometimes I wonder where I would be if I had treatment then, but I would have probably lived a lot differently and I don't regret that part. It didn't hit the fan until I was trying for kids, as MS often has terrible timing and a very poor sense of humor, but my neuro was keen to support a "geriatric mother" 🙏 Its hard to understand invisible symptoms, particularly when they wax and wane, or the price we have to pay for engaging in certain activities.

[carolek572 CommunityAmbassador]

Welcome to the forum, TeeKay408 ! I enjoyed your story and your positive enthusiasm is contagious! It is not uncommon for a ‘ms’ diagnosis to take such a long time. My ‘ms’ diagnosis took about 10 years to be confirmed. To gain more knowledge about ‘ms’, please visit mymsaa.org