Newly diagnosed and looking for information, support, and connections. My name is Anna and I live in Colorado. It has taken some time to get a diagnosis and a little frustrating. But after reading, it appears getting a diagnosis isn’t always easy and I guess it just took a while for me to get my Neurologist (Dr. Z) to connect the dots. The first symptom occurred in 2006 while I was competing in a horse show. I had the most terrible pain in my right leg and after visiting the ER was told I had a sprained ankle. Gotta love ER’s! After getting back home, I went to my primary care because not only was I in terrible pain, I had cramping and now had lost the use of my footwould eventually be diagnosed with “dropped foot”. Eventually landed at the Neurologist where I was told that the best guess was that I had a horse accident (which never seemed to make sense and frankly I never thought was accurate) and that it had torn the nerves behind my right knee. I had numbness, weakness, and a drop foot for about a year.
The next significant episode was I woke with SSHL (Sudden Sensorial Hearing Loss) in my right ear about 4 years later in 2010. The loss was treated with steroids but the loss turned out to be significant and permanent so I am largely deaf in my right ear. In my appointments with both the ENT and Neurologist, I asked if the nerve damage in my leg and the nerve damage/death in my right ear was connected. I was told nope, that these were not related.
On a vacation about a year later, I fell hard (which was happening more and more often) and my leg was numb and I was having some mobility issues so back to Dr. Z I went. He told me that I had suffered nerve damage back in 2006 and that I would never be 100%. I told him about my problems with my leg falling asleep (no pins and needles, just numbness) and often cramping when skiing, horseback riding, walking, or exercising. I was told to stay away from tight shoes and skiing would be not recommended due to the high and tight boot. Of course, my family and especially my husband remained skeptical and felt that something was not right and that there was more going on than isolated nerve damage.
Fast forward to about 8 weeks ago when I had another “episode” where I lost a lot of sensitivity on my entire right side. My entire right leg, right arm, and some areas on my back and torso. It took about 6 weeks to get in with Dr. Z and this time my husband came along. The tone of the appointment was completely different than previous ones. I like Dr. Z but didn’t always feel that he really listened to my concerns and dismissed any suggestions that all of the nerve “damage” was on my right side and couldn’t it be related? Dr. Z felt that we needed to have some MRI’s ASAP and he brought up MS and Transverse Myelitis. I will admit that I was scared and up to this point thought I had Peripheral Neuropathy based on my online sleuthing. Dr. Z called me and said that although not definitive, that he believes due to the demyelination in my neck and spine that I have MS and will need further MRI’s to diagnose and create a treatment plan. I have my brain MRI tomorrow night and then will meet with Dr. Z to discuss my prognosis and treatment plans.
Thanks so much for reading my intro and look forward to getting to know others. I am sure I have tons of questions so will be reading through the message boards. I hope I have this in the correct location.
PS I am 41 and live with my husband and 2 teenage boys. We live on some land so I really enjoy my horses, dogs, cats, and chickens! Yes chickens! I just got them this past Spring and really enjoy my “girls”.
The next significant episode was I woke with SSHL (Sudden Sensorial Hearing Loss) in my right ear about 4 years later in 2010. The loss was treated with steroids but the loss turned out to be significant and permanent so I am largely deaf in my right ear. In my appointments with both the ENT and Neurologist, I asked if the nerve damage in my leg and the nerve damage/death in my right ear was connected. I was told nope, that these were not related.
On a vacation about a year later, I fell hard (which was happening more and more often) and my leg was numb and I was having some mobility issues so back to Dr. Z I went. He told me that I had suffered nerve damage back in 2006 and that I would never be 100%. I told him about my problems with my leg falling asleep (no pins and needles, just numbness) and often cramping when skiing, horseback riding, walking, or exercising. I was told to stay away from tight shoes and skiing would be not recommended due to the high and tight boot. Of course, my family and especially my husband remained skeptical and felt that something was not right and that there was more going on than isolated nerve damage.
Fast forward to about 8 weeks ago when I had another “episode” where I lost a lot of sensitivity on my entire right side. My entire right leg, right arm, and some areas on my back and torso. It took about 6 weeks to get in with Dr. Z and this time my husband came along. The tone of the appointment was completely different than previous ones. I like Dr. Z but didn’t always feel that he really listened to my concerns and dismissed any suggestions that all of the nerve “damage” was on my right side and couldn’t it be related? Dr. Z felt that we needed to have some MRI’s ASAP and he brought up MS and Transverse Myelitis. I will admit that I was scared and up to this point thought I had Peripheral Neuropathy based on my online sleuthing. Dr. Z called me and said that although not definitive, that he believes due to the demyelination in my neck and spine that I have MS and will need further MRI’s to diagnose and create a treatment plan. I have my brain MRI tomorrow night and then will meet with Dr. Z to discuss my prognosis and treatment plans.
Thanks so much for reading my intro and look forward to getting to know others. I am sure I have tons of questions so will be reading through the message boards. I hope I have this in the correct location.
PS I am 41 and live with my husband and 2 teenage boys. We live on some land so I really enjoy my horses, dogs, cats, and chickens! Yes chickens! I just got them this past Spring and really enjoy my “girls”.
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