I have posted a few times but not for awhile. I am still in limbo but getting closer. I had a neuro exam that was not normal, the findings were --- multiple transient neurologic symptoms: differential includes MS vs. vasciulitus related to a systemic autoimmune process. My neurologist has since ruled out vasciulitus. My MRI showed one lesion consistent with MS, the LP was normal. But new and more serious symptoms have since popped up and have not resolved at all. He wants to do another MRI and I'm worried its to soon.
Also, we talked about that there are 5-10% of people that don't show lesions at first, or early on, and 15-20% without O bands. He thinks I am that percentage, when I did the LP the radiologist said 3% of people get a headache, well I was one of them because I couldn't stand up for 4 days without my head throbbing, pounding, felt like getting sick.
3 days after the MRI on March 6, my right leg went totally numb, it started burning so bad, then pain and total numbness. Now, it has spread to my right foot, right hand and arm, chin, left foot, shin, arm. The tingling drives me crazy, feels like bugs crawling all over. Some times certain fabrics rub wrong and I want to take clothing off. When I get hot, from my clothes, the sun, or a warm room, the burning gets worse and feels like body parts are on fire.
My neuro gave me lidocaine patches and that did nothing. When the burning spread, he gave me gabapentin. 300mg 3x a day, after a week, I called with no change in symptoms, so he upped it to 600mg 3x a day, I decided to stretch it out to the 300 mg every 3 hours, so that I still got the 1800 mg for the day. When that didn't help, I did the 600mg 3x a day. At my last exam, April 29th, I told him that it still wasn't working. He said after a week he would go up to 900mg 3x a day. Well, the burning was so bad, I couldn't wait a full week, it's still not working.
It it was a good visit, he thinks that I have (am still having) CIS right now, and that we caught it so early that it has yet to show up on the MRIs or LP. Which is why he wants to do another MRI since these new symptoms started after the last MRI and haven't resolved. In fact they are getting worse. The dysphagia is becoming more often, the burning is worse, especially when I get hot, it's constant, there is never an end to the burning, it's always there, just not always in the same spots. Sometimes my face burns, others it's my fingertips or toes. My right thigh tingles all the time in the same place, that is the only new place so far for the tingling. My right leg trembles, and when I stand it's weak, like it doesn't want to hold me up. While I was there it was trembling so bad you could visibly see it, so he grabbed my ankle to feel it. Don't even ask about my memory because I'll forget you asked and won't know that you are waiting for an answer. I'm so tired, every part of me, that I have little energy to even go to work which is why I told him I wasn't ready to start treatment. But my job ends at the end of school so by then I may be desperate to start.
We also discussed the top 10 mimics of MS, we went down the list and eliminated all but one because not enough symptoms of the other disorders. We discussed common symptoms of lupus and MS, so he wants to send me to a rheumatologist to do blood tests. The only problem is I don't have the major or worse symptoms of lupus: butterfly mask, arthritis in the fingers, nor sun sensitivity shown by a rash. I also asked him how many patients he sees with MS since he specialized in sleep disorder neurology. He said quite a few, but that it would not hurt his feelings in any way if I want to see a specialist, in fact he would recommend it. There is one about 2.5 hours away that is his go to guy when he has questions. I looked him up and he is listed by the NMSS.
So I am currently waiting for the insurance approval for the referral to the specialist. We have already gotten it for the rheumatologist and they are both in the same town so it would be nice if the visits are on the same day to save me time. There is my rant for the month sorry it was so long.
Also, we talked about that there are 5-10% of people that don't show lesions at first, or early on, and 15-20% without O bands. He thinks I am that percentage, when I did the LP the radiologist said 3% of people get a headache, well I was one of them because I couldn't stand up for 4 days without my head throbbing, pounding, felt like getting sick.
3 days after the MRI on March 6, my right leg went totally numb, it started burning so bad, then pain and total numbness. Now, it has spread to my right foot, right hand and arm, chin, left foot, shin, arm. The tingling drives me crazy, feels like bugs crawling all over. Some times certain fabrics rub wrong and I want to take clothing off. When I get hot, from my clothes, the sun, or a warm room, the burning gets worse and feels like body parts are on fire.
My neuro gave me lidocaine patches and that did nothing. When the burning spread, he gave me gabapentin. 300mg 3x a day, after a week, I called with no change in symptoms, so he upped it to 600mg 3x a day, I decided to stretch it out to the 300 mg every 3 hours, so that I still got the 1800 mg for the day. When that didn't help, I did the 600mg 3x a day. At my last exam, April 29th, I told him that it still wasn't working. He said after a week he would go up to 900mg 3x a day. Well, the burning was so bad, I couldn't wait a full week, it's still not working.
It it was a good visit, he thinks that I have (am still having) CIS right now, and that we caught it so early that it has yet to show up on the MRIs or LP. Which is why he wants to do another MRI since these new symptoms started after the last MRI and haven't resolved. In fact they are getting worse. The dysphagia is becoming more often, the burning is worse, especially when I get hot, it's constant, there is never an end to the burning, it's always there, just not always in the same spots. Sometimes my face burns, others it's my fingertips or toes. My right thigh tingles all the time in the same place, that is the only new place so far for the tingling. My right leg trembles, and when I stand it's weak, like it doesn't want to hold me up. While I was there it was trembling so bad you could visibly see it, so he grabbed my ankle to feel it. Don't even ask about my memory because I'll forget you asked and won't know that you are waiting for an answer. I'm so tired, every part of me, that I have little energy to even go to work which is why I told him I wasn't ready to start treatment. But my job ends at the end of school so by then I may be desperate to start.
We also discussed the top 10 mimics of MS, we went down the list and eliminated all but one because not enough symptoms of the other disorders. We discussed common symptoms of lupus and MS, so he wants to send me to a rheumatologist to do blood tests. The only problem is I don't have the major or worse symptoms of lupus: butterfly mask, arthritis in the fingers, nor sun sensitivity shown by a rash. I also asked him how many patients he sees with MS since he specialized in sleep disorder neurology. He said quite a few, but that it would not hurt his feelings in any way if I want to see a specialist, in fact he would recommend it. There is one about 2.5 hours away that is his go to guy when he has questions. I looked him up and he is listed by the NMSS.
So I am currently waiting for the insurance approval for the referral to the specialist. We have already gotten it for the rheumatologist and they are both in the same town so it would be nice if the visits are on the same day to save me time. There is my rant for the month sorry it was so long.