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  #251  
Old 02-03-2018, 10:08 PM
GoatHerder GoatHerder is offline
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Originally Posted by Afrayedknot View Post
Hi, My name is Andy. I'm 45 and live in Michigan. Work as an engineer in the automotive industry. Love walking my dog and giving flight instruction. I was diagnosed end of 2016. Lately, my cognitive is worsening and spasticity is starting. Was taking Tecfidera. MRI from Tuesday shows new enhancing lesions. Wednesday I was accepted to the Northwestern HSCT trial in Chicago. I'm starting the washout period for the next three months. Scared about stopping tecfidera. I'm learning allot about the pros and cons with HSCT on here. Having second thoughts.
Hi Andy,
I had just finished building a new autogyro when M.S. hit me. I got to only fly it once, then permanently grounded myself after that. Gosh I miss it. I've been on Avonex interferon since diagnosis and have responded well to it the last 17 years.

My gait is terrible, so I go around outside of my house in a power wheelchair. For every door that has closed for me because of my condition, I have found a new one to open. No, I can't fly, or sail or many other things I used to enjoy, but I have found new outlets for my engineering background (EE) so in a way, M.S. has actually enhanced my life considerably!

Welcome to the forum!
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  #252  
Old 02-04-2018, 03:24 PM
Afrayedknot Afrayedknot is offline
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Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.
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  #253  
Old 02-05-2018, 07:18 PM
GoatHerder GoatHerder is offline
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Originally Posted by Afrayedknot View Post
Thanks for the encouragement. Sorry you had to hang up your wings. I'm glad you found other things to keep your mind active. My disability is not visible to the world. Yet. Cognitive problems are my biggest complaint. My neck has been killing me for a few weeks. Legs are cramping up. The doctor said it's from my lesion on my spinal chord. Only going to get worse he said. HSCT seems like something I should do sooner rather than wait for things to get totally out of hand. I still want to build that Wittman Tailwind.
It was the leg cramps and vertigo that caused me to ground myself. I've not had any real cognitive issues to speak of. As an engineer and physicist, I was always in the top couple percent of brain usage. I don't do the Calculus in my head anymore, but I think that's more from non use than M.S. symptoms.

I find taking care of my farm and animals a very rewarding pastime now.

Wittman Tailwind sounds like a great project! I did keep my CNC plasma cutter from my old aircraft building days. I find it quite handy on the farm for making tools and farm implements.
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Retired engineer, now hobby farmer with goats, chickens, an old dog,and a lazy barn cat!
Watch my goats at GoatsLive.com
Active in amateur radio
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M.S. since 2000
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  #254  
Old 02-06-2018, 07:15 PM
Afrayedknot Afrayedknot is offline
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My background is physics and engineering as well! And I fly for the challenge of it. What a coincidence. Maybe they should do a study on egg heads with pilots licenses. Personally think my type A personality got me in trouble in the first place.
BTW I fly in a club in Toledo. We have a Pietenpol aircamper..
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  #255  
Old 05-27-2018, 10:25 PM
VanR VanR is offline
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Hi everyone! I was just diagnosed April 17, 2018, so very recent. I'm a runner and also very active at the gym, doing all kinds of bootcamp/tabata/HIIT classes. I had been dealing with strange "symptoms " and injuries from late 2016 and all through 2017. Last March, during a half-marathon, I experienced a "floppy" left leg and had a difficult time finishing the race. My regular time was usually anywhere between 1:50 and 2:04, but I finished with a 2:15. At first I thought maybe I had not trained enough. A few months later, during a different race in September, I experienced the floppy leg again, and my time went to 2:37. Fast-forward to November 2017, and my time was now 2:44, with extreme leg fatigue and tightness and just overall crappy gait. Left leg numbness has been with me for a few years now, but it was always attributed to compressed sciatic nerve. My family doctor sent me for MRI of lower back, and in January 2018, I was told that I had a herniated disc at L5-S1. Spine specialist told me to stop all physical activity, specially running! Prescribed PT and rest for 3 months. I followed his advice, though it was very hard for me to stop running and the gym, and became very depressed. I attended PT 3x per week for over two months, with no real improvement. In fact, I feel like my legs became tighter and way more achy during this period of time! My PT, who's also a good friend of mine, referred me to a different spine doctor for a second opinion. During regular examination, he found hyperreflexia, and ordered cervical/thoracic MRI, plus lots of bloodwork to find vitamin deficiencies and test for lyme disease. The results revealed inflammation and tiny lessions at C3 and C5, and he immediately ordered brain MRI and referred me to a neurologist. A few lessions found on brain MRI. I have seen 3 different neurologists since, and they all agreed on MS. I am relieved to finally know what is wrong with me, but also a little terrified. Two of the neurologists I saw recommended I get on meds right away and gave me a few booklets. One of the doctors said we could go on a "wait and see" approach. All three doctors seem to agree that this is "mild MS", as I didn't have any other symptoms. (But I have read that starting out with leg problems as opposed to optic is actually not a good thing!)

In the past month I have started running and going to the gym again, though it is a struggle. I was used to running a 10k about 5-6x per week, and now even 2-3 miles are hard, as my left leg gives out and I get a little foot drop. But I'm not giving up and I feel much better (emotionally) since I started running again!

In the past 3 weeks or so, I have developed other symptoms: mild pins and needles in my right arm/hand that comes and goes; pins and needles in my right foot, that also comes and goes! My right little toe seems to always be asleep recently. I experienced a little tingling on half of my face a few days ago and it really freaked me out, but only lasted about 2 days, and it's now gone.

I'm really stressing about starting meds, since all the side effects sound a little scarier than my current symptoms! But I realize that it might not be smart to delay treatment. Meeting with the first neurologist (the one who diagnosed me) on June 1st.

Sorry for the long/ramble first post. I'm just glad to find this forum, and be able to hear about others going through the same thing as me.

Oh, also I'm female and just turned 42 three weeks ago.
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  #256  
Old 05-29-2018, 12:19 PM
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ActiveMSers ActiveMSers is online now
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Van! Glad you found us, and many of us have been right where you are. Starting meds can be a bit stressful, but this recently published piece by the Cleveland Clinic might put the issue into better perspective.

Quote:
For most people, itís better to take drugs for multiple sclerosis (MS) early rather than let the disease run its course, according to new treatment guidelines from the American Academy of Neurology.

https://health.clevelandclinic.org/d...ple-sclerosis/
Sorry you are joining us on this journey, but you won't meet a better bunch of MS misfits, period. Look forward to seeing you here.
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  #257  
Old 05-29-2018, 01:40 PM
AMFADVENTURES AMFADVENTURES is offline
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Van, well, at least you've managed to find the best MS website on the internet. Dave has put together a reasonably comprehensive set of resources for learning about and coping with this condition which is frequently supplemented with references to late breaking news on the MS front, as well as a community of MSers actively engaged in life in spite of this disease. So, welcome, and I also look forward to seeing you around here!
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  #258  
Old 06-06-2018, 08:40 PM
VanR VanR is offline
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Originally Posted by ActiveMSers View Post
Van! Glad you found us, and many of us have been right where you are. Starting meds can be a bit stressful, but this recently published piece by the Cleveland Clinic might put the issue into better perspective.



Sorry you are joining us on this journey, but you won't meet a better bunch of MS misfits, period. Look forward to seeing you here.
Thank you so much! Met with neuro last week, and still not sure what meds to get on. I was JCV positive, so Tysabri is out. That was my first choice! He offered Ocrevus, but that one freaks me out, so I refused it.

Testing for TB and liver function now to see if I can do Aubagio. Feeling a lot better and finding that a bit of Tequila takes all my symptoms away! I might have found my "medicine". 😝😂
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