Intro and my story

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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bbright
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Joined: Fri Jul 03, 2015 11:22 am

Intro and my story

Post by bbright »

Hi all, I'm a 48 year old female who is searching for answers and came across this forum. Apologies for the super long post, but I want to give some background in case anyone here has some thoughts.

I have been very active my whole life: tennis, regular yoga, and especially hiking and running. I climbed Kilimanjaro four years ago and have done quite a few other long treks, for example. Last fall during a 12-mile hiking trip in the Catskills my left knee went out. I started physical therapy, and was going once or twice a week until mid-March of this year. With regular exercise and using tape on my knee, my knee issues were resolved. In January, I placed fourth in my age group in a 4-mile race, and I ran a half marathon on April 19. The race went well and I met my time goal.

At around the same time, I was going through a very stressful period: in addition to the heavy training for the race, I had a major project deadline at work, I hosted out of town guests and moved into a new apartment, which required a lot of work and preparation. We got the keys to the new place on April 20, the day after the half marathon, and immediately set to work painting, etc., before doing the major move of all the furniture on April 26. Because of the move, I didn't run for a couple of weeks because I was so active with moving. (our previous apartment was a fifth floor walkup, so I was getting PLENTY of exercise). I did lift a lot of heavy boxes and stuff during the move, but never felt any pain or like I'd hurt my back in any way.

So everything is hunky dory and I start running again right around May 1. It's spring time, gorgeous weather, but I notice every time I go out to run, I trip with my right leg. I think it's odd and start to monitor it and it begins to get worse, like I am almost dragging the right foot. This is all very subtle at first and I try different things, like changing my shoes, or taping my knees a different way to see if that makes a difference. But this feeling persists, and it's an effort to move the right leg forward and off the ground in a normal way.. but no pain at all. It begins to get worse on my runs, but very subtly. It feels like I can't get control of my legs, sort of like moving on a too-fast treadmill. I am in great physical shape and yet the distance I'm able to run gets shorter and my times begin to get slower. A four-mile race the second week of May is at least a minute slower per mile than my typical pace. By June 11, a 5K race is about two minutes per mile off my normal pace. My legs feel like they keep locking up during the race and I cross the finish line barely winded and extremely frustrated and depressed.

One other side note, in April, I happened to be undergoing some genetic counseling related to a diagnosis of endometrial cancer in late 2012 and was told I have Lynch syndrome which makes me at increased risk of colon and other cancers. Following a total hysterectomy in Jan. 2013, I noticed stiffness after sitting for a while that I'd never had before and also definite bladder issues, which didn't seem that surprising but that I've had a hard time controlling ever since. I also noticed after that and still do, that my stomach seems to be swollen up at times. I am normal weight, otherwise good vitals. And my subsequent regular checkups including a full body MRI in Jan. 2014 were all clear.

When these running symptoms started presenting in April, my first worry was Parkinson's, as my father had early onset Parkinson's diagnosed in his early 40s and he died at age 65. I made an appointment with a neurologist. I passed all my physical tests in my consultation with her, but she recommended an MRI. That showed a small lesion on my cervical spine. She recommended that I see an MS specialist at the same hospital, but her tentative diagnosis was transverse myelitis.

Lately, I also have begun to experience vertigo or dizzy spells, which I'd never felt before, particularly when turning my head. This comes and goes. I have also been trying to monitor and it does seem like I have more trouble running when it is hotter, but it is hard to tell for sure. Changes in surfaces -- bumps or dips in the road -- even when walking now, definitely challenge me and I noticed I tend to stick to curbs or painted lines in the road to help me stay on a straight track. The back of my neck and my upper spine are also very tight. I've had movement issues with my neck for quite a while and attributed it to both aging and also sitting at a computer for sometimes up to 15 hours a day due to a high-stress editing job.

Oh, one other thing, during an intense, five-day trek the summer before last, after about 12 hours of hiking, my legs had this crazy electrified sensation I'd never felt before but that sounds similar to what some have described here as pins and needles. It was intense, not necessarily painful, but like static electricity running through my lower legs, and I had trouble keeping my legs still even though I was exhausted. This happened a couple of nights in a row and then I never felt it again.

Also, regarding nutrition, I consider myself a healthy eater. Oatmeal and fresh fruit most mornings. Some meat, but mostly veggie meals, with beans, nuts.. but a good amount of pasta and rice. Always good vital signs and cholesterol levels.

Anyhow, I saw the MS specialist the week before last and both he and his nurse performed the physical tests, including the awful scraping of the bottoms of my feet... and apparently I passed with flying colors. They ordered blood tests to check for an array of things, an ocular nerve test and a contrast MRI of my cervical spine, all of which I've since done, and a spinal tap, which won't be for another couple of weeks due to no openings. They don't want to discuss any results until the spinal tap results are in. The delay is frustrating. I read that with transverse myelitis, for example, that a cortisoid (?) shot, can sometimes halt and reverse symptoms. So I sort of feel like I want to see another neurologist who might be willing to try that, even if it is wishful thinking...

The plan after my half marathon was to train for a full marathon in late August that I have already bought tickets to -- something I'd been looking forward to for about 9 months. Now I struggle off and on to go farther than a mile without my legs going all spastic and out of control on me, and it is such an exhausting mental effort to keep my legs going. I can often just power through it, and it can pass for a while where I feel the old smooth stride, but then it comes back. I also notice that if I stop running for a couple of minutes, I can sprint for like 30 seconds before the locking/spastic feeling kicks in.

Thanks for anyone reading this long post. My partner had been telling me for weeks that what I was experiencing was nothing and would pass... though I knew that something was definitely wrong. I appreciate all the posts here that I've already read that help me not to feel so alone in this, and I do appreciate any and all thoughts!
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lyndacarol
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Re: Intro and my story

Post by lyndacarol »

bbright wrote:Thanks for anyone reading this long post. My partner had been telling me for weeks that what I was experiencing was nothing and would pass... though I knew that something was definitely wrong. I appreciate all the posts here that I've already read that help me not to feel so alone in this, and I do appreciate any and all thoughts!
Welcome to ThisIsMS, bbright.

There is always the chance that your partner is correct – that your symptoms will pass. But, in my opinion (I have no medical background), you are the better judge – you know your body best, you feel that something is definitely wrong.

A lot of good advice has been posted here, which, undoubtedly, you have already read. Assemble a medical team you trust and admire, include at least one "disease detective." We wish you all the best. We are here for you – you are definitely not alone in this; we are willing to offer our opinions, when asked.
bbright
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Posts: 2
Joined: Fri Jul 03, 2015 11:22 am

Re: Intro and my story

Post by bbright »

Thank you for the encouragement and support!
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