I just got diagnosed with Multiple Sclerosis. I'm still not sure it is what I am struggling with as I've seen 3 different neurologists and no one is in total agreement. I'm searching for as much information as possible and if anyone has an info/experience etc I would be very appreciative.
I recently posted a question on the USAT coaches group and I've been receiving a lot of good information. I hope to continue to learn as much as I can. Sorry for the lengthy post here but thanks in advance for your help!
I am reaching out on a personal level- as a coach and Ironman Athlete.
I have been racing Ironman since 2005. Before that I did a lot of biking, spinning, running, strength work, Pilates and things and have really been in good shape from 1996 through the now. However, during 04 I started having some weird health stuff and although 05 was a successful year of training and racing I struggled a bit with fatigue, weakness, hair loss, low bone mass and unexplainable itching. We attributed this all to over training, teaching classes, coaching and working a full time job.
In 2006 I focused on sleep, lessened my training load and still had similar issues.
In 2007 I had a big year with Lake Placid and IM Wisconsin along with a couple of 70.3s. I seemed to struggle with a lot of stomach issues, urinary tract infections and more weakness, hair loss, itching and fatigue. I did qualify for Hawaii at IM WI though and shuffled through Clearwater in November and then I took a long break once again.
In 2008 I continue to struggle with fatigue, hair loss, itching and the first Ĺ of the year I really struggled with stomach issues.
Over the years I have seen PCPs, an allergist, a rheumatologist, endocrinologists, ENTs, gastroenterologists and just lately, 3 neurologists.
I experienced my first DNF at IM CDA this June. I trained so hard for the race and was expecting to perform very well after pulling out of Eagleman the week of, seeing the GI doc and starting on a medication for colon ulcers and gastric emptying issues that was discovered. But instead I had horrible stomach pain all morning, struggled through the swim after getting kicked in the head right at the beginning and road in a fog. I thought I had a concussion? I felt so disoriented on the bike and threw up throughout the ride. I fell into the volunteers arms coming into T2 and rested on a cot for 45 min, tried to run but ended in an ambulance at mile 7.
I took it easy once again for the next several weeks but did 3 Ĺ Iron distance races July 20th, July 27th and Aug 2nd Ėbut the morning after Newfoundland 70.3, July 28th, my health really deteriorated. I became really dizzy, weak and nauseous. This continued for weeks with 3 to 5 days each week filled with Vertigo. I saw a neurologist and he said it was Migraines and sent me out with an Rx for Topamax. I insisted on an MRI after a recent trip to the ER and a CT scan that seemed okay. The MRI showed a lesion consistent with MS. I then saw another neurologist, had a lumbar puncture and it detected high levels of proteins consistent with MS. I also had 20tubes of blood drawn. Next was another trip to the ER after a stroke like attack, then the MS specialist who ordered more MRIs and a few more lesions were discovered in the cervical spine. No lesions seemed to be active though?
So, I have been diagnosed with MS as of September 16th.
I do have a lot of weird symptoms but two of the three neurologist still do not feel it fits MS. I started a medication for MS, Copaxone, and I continue to feel a bit better every day but still have some dizziness and weird vision issues along with tons of fatigue.
Another doctor just added Provigil and I did my first workout Friday after being off for nearly 15 days. I did an easy bike, super short swim and short run. I felt weak but to be expected after the downtime but I was so happy to be working out. I tried to ride the IM WI course yesterday but only made 88 miles as I was just too weak.
I used to train 18 to 25 hours a week. But since June that really has lessened and in August I only got a couple short workouts in consisting of only 1 swim, some bikes, and somehow I rallied and got one great 144mile ride on the IM WI course in just over 7hrs, a couple of runs of which only 1 up to 60min. Septemberís total training is even less with a couple trainer rides, 1 IM WI ride on the trainer, several failed attempts at Hawaii on the CompuTrainer and a couple short runs and then this past Friday and Saturdays workouts.
So here is the deal, I am supposed to do Ironman Hawaii Oct 11th.
Sometimes I think I have the base to pull me through and sometimes I just donít think Iíll make it at all.
I am desperate for help. I am looking for advice and any knowledge that anyone may have on Multiple Sclerosis and Ironman athletes. Iím reading and researching as much as I can but your help is so appreciated. And if anyone has any other thoughts on what else perhaps Iím suffering from, please share, I know there are several physicians on this coaches group.
Iím working with a new team of doctors and will be looking into mercury toxicity, a chronic fatigue panel and more yet as Iím determined to fight this- whether itís MS or another autoimmune issue. I know I can get better but I know itís going to take a lot of work. Your help is greatly appreciated. Thank you in advance for any information you might be able to provide.
Wishing you all the best in your training, racing and coaching and thanks again!