Hello, I am a 48 year old and I believe I have just been not so formally diagnosed with CIS. As my 2nd opinion Neuro, took me more seriously than the first. (Which seems to be an ongoing problem for people like us.)
He basically said, 'Yes, your symptoms are out of normal, but they are also out of the normal for MS. Let's wait for a second flare and then we can get more testing that should have been done during your first flare.'
Here's my story in retrospect. It started towards the end of last year. It started small with very slowly increasing symptoms. All sorts of things> Shaking, tremors, slight in hands, then legs, then you could even hear my voice shaking when it got to its peak. (No drugs, no etoh, ect.) By the time I went to my PMD, my tremors were so bad, my doctor looked at me, just looked, no exam and immediately wrote for an MRI and neuro consult. She just thought it was tremors, but that was just the most obvious one by this time. I had already had to quit work as my brain was not sharp anymore and I felt like I was going to kill someone that I was sworn to help. (I am an ICU nurse, or was.)
My brain was just off, really bad, foggy, forgetful, ataxic like my hands. I couldn't remember simple things and after almost potentially causing serious harm by a stupid mistake, I just couldn't go back, scared out of my mind. I am a very smart woman. Graduated Magna Cum Laude, (Would have been Suma, but online chemistry killed that chance! lol)
The day I had the MRI, I thought I was feeling about 80 % better. The grass needed to be cut, big mistake, it wasn't even that hot out and I usually cut it all summer long and no problems. Well, the neighbor saw me go down. It wasn't my heart, it was whatever this is, every symptom was so intense. After I got inside it slowly eased up and I was back to 80%.
The stupid first neuro, claimed it was 'just my fibro' and 'have I spoken with a counselor?' I almost got up and slugged him one! And 'yes you have white matter lesions, but that could be normal aging for a person your age.' Then he dug himself deeper, by saying: 'If you were 35y/o and had HTN we would expect to see these lesions, now if you were 35 and had these without any vascular history and your symptoms, then we'd be concerned.' I said: I'm 47 and have no vascular history at all, why do I have these symptoms then? You are making no sense.'
My doctor was appalled that he treated me this way. So, was I. She sent me to another one, and he was so much better, he actually did a full neuro exam. (benefit of being a nurse, I knew what one looked like.) He said it could be MS, but it's not presenting like typical MS would be. He said too, 'No it's not your fibro, Fibro stays the same and does not get worse over time.' The first 'doc' didn't even bother to get a spinal tap, so all I had was the MRI which showed a lot of white, bright lesions in all different areas, but notably in the occipital and parietal. By the time I went to the second one, I had almost stopped shaking and could formulate words in complete sentences again. So, he couldn't see how bad it was, But I brought my 16y/o daughter and he also asked her about it.
The height of this 'wave' of symptoms was about in May, it had gotten so bad that I HAD to take a nap mid mornings, I am not a nap person! Also, my hands as well as shaking seemed off in color, not really gray and dusky, but not pink either. (No new murmur, normal heart rate, no chest pain/sob, not even any stomach upset.) This lasted for maybe 2 weeks, then slowly got better and then I didn't need any naps anymore. then every other symptom slowly decrescendo'd back down to more a normal level, and today I am okay, no 4 different types of tremors, brain not as foggy, etc.
Oh, along with the symptoms I mentioned, I also had eye pain, sometimes sharp like I was being stabbed in the eye, sometimes dull, like you would feel if you pressed on your lids. bouncing back and forth from eye to eye. No loss of vision. Also, not really numbness, but tingling, hands and feet, and this weird feeling like I had a hair on my hands, left index finger the most and sometimes, right thumb. Also, if I were laying down and I put my arms up, to blow a kiss to my girl, my hand would flop back and I almost actually punched myself a few times. Loss of balance and dizziness, But no actual falling, yet. But at it's worse, I had to hold on to the walls or furniture to feel more stable. If I closed my eyes, it would be worse.
I am not stupid, I know there is something wrong, and with all my research it sure sounds like it to me, but I am only a woman and nurse, no one will listen to me, who knows her body better than anyone else.
So, there that is my story so far..sitting here, waiting for something more to happen. I'm not sure if I am imagining it, but I may be starting to cresendo back up again. My eyes haven't hurt me in a while and today, they started again, and it's been a few weeks since I felt those hairlike sensations on my hands, til today, and I seriously almost fell big time in the shower today, it was hard, but I caught myself.
OH! Another thing. I have never had a yeast infection in my LIFE!! Never!! And since this 'episode, flare' whatever it is. I got my first yeast infection in August and it's still here, not going away, multiple rounds of diflucan and creams and douches and it's here. I even cut out most yeast, and added soooo many new homeopathics, food wise and supplement wise, and it's still not completely gone.
So, my big questions would be:
1) Are my symptoms really that atypical? Does anyone elses go in waves, slowly building up to a peak, then back down?
2) The discoloration in my hands at the peak of it. Has anyone else had that?
3) Does anyone else have the yeast infections BEFORE they got treatment for their MS, (that I hear can cause them)?
4) Am I just supposed to sit here and wait now for another flare to get diagnosed?
5)If I don't have another flare or crescendo of a flare by Feb (my next appt time), if they do a re-do MRI and my first Spinal, could they still tell if it is MS? Won't my lesions not be 'bright' anymore if I am not flaring? Or have new ones? Can they still see the demylenation in the Spinal if there is not an active flare?
Okay, I've bothered you all enough. Thanks so much for any help/guidance you can give me! :-)
He basically said, 'Yes, your symptoms are out of normal, but they are also out of the normal for MS. Let's wait for a second flare and then we can get more testing that should have been done during your first flare.'
Here's my story in retrospect. It started towards the end of last year. It started small with very slowly increasing symptoms. All sorts of things> Shaking, tremors, slight in hands, then legs, then you could even hear my voice shaking when it got to its peak. (No drugs, no etoh, ect.) By the time I went to my PMD, my tremors were so bad, my doctor looked at me, just looked, no exam and immediately wrote for an MRI and neuro consult. She just thought it was tremors, but that was just the most obvious one by this time. I had already had to quit work as my brain was not sharp anymore and I felt like I was going to kill someone that I was sworn to help. (I am an ICU nurse, or was.)
My brain was just off, really bad, foggy, forgetful, ataxic like my hands. I couldn't remember simple things and after almost potentially causing serious harm by a stupid mistake, I just couldn't go back, scared out of my mind. I am a very smart woman. Graduated Magna Cum Laude, (Would have been Suma, but online chemistry killed that chance! lol)
The day I had the MRI, I thought I was feeling about 80 % better. The grass needed to be cut, big mistake, it wasn't even that hot out and I usually cut it all summer long and no problems. Well, the neighbor saw me go down. It wasn't my heart, it was whatever this is, every symptom was so intense. After I got inside it slowly eased up and I was back to 80%.
The stupid first neuro, claimed it was 'just my fibro' and 'have I spoken with a counselor?' I almost got up and slugged him one! And 'yes you have white matter lesions, but that could be normal aging for a person your age.' Then he dug himself deeper, by saying: 'If you were 35y/o and had HTN we would expect to see these lesions, now if you were 35 and had these without any vascular history and your symptoms, then we'd be concerned.' I said: I'm 47 and have no vascular history at all, why do I have these symptoms then? You are making no sense.'
My doctor was appalled that he treated me this way. So, was I. She sent me to another one, and he was so much better, he actually did a full neuro exam. (benefit of being a nurse, I knew what one looked like.) He said it could be MS, but it's not presenting like typical MS would be. He said too, 'No it's not your fibro, Fibro stays the same and does not get worse over time.' The first 'doc' didn't even bother to get a spinal tap, so all I had was the MRI which showed a lot of white, bright lesions in all different areas, but notably in the occipital and parietal. By the time I went to the second one, I had almost stopped shaking and could formulate words in complete sentences again. So, he couldn't see how bad it was, But I brought my 16y/o daughter and he also asked her about it.
The height of this 'wave' of symptoms was about in May, it had gotten so bad that I HAD to take a nap mid mornings, I am not a nap person! Also, my hands as well as shaking seemed off in color, not really gray and dusky, but not pink either. (No new murmur, normal heart rate, no chest pain/sob, not even any stomach upset.) This lasted for maybe 2 weeks, then slowly got better and then I didn't need any naps anymore. then every other symptom slowly decrescendo'd back down to more a normal level, and today I am okay, no 4 different types of tremors, brain not as foggy, etc.
Oh, along with the symptoms I mentioned, I also had eye pain, sometimes sharp like I was being stabbed in the eye, sometimes dull, like you would feel if you pressed on your lids. bouncing back and forth from eye to eye. No loss of vision. Also, not really numbness, but tingling, hands and feet, and this weird feeling like I had a hair on my hands, left index finger the most and sometimes, right thumb. Also, if I were laying down and I put my arms up, to blow a kiss to my girl, my hand would flop back and I almost actually punched myself a few times. Loss of balance and dizziness, But no actual falling, yet. But at it's worse, I had to hold on to the walls or furniture to feel more stable. If I closed my eyes, it would be worse.
I am not stupid, I know there is something wrong, and with all my research it sure sounds like it to me, but I am only a woman and nurse, no one will listen to me, who knows her body better than anyone else.
So, there that is my story so far..sitting here, waiting for something more to happen. I'm not sure if I am imagining it, but I may be starting to cresendo back up again. My eyes haven't hurt me in a while and today, they started again, and it's been a few weeks since I felt those hairlike sensations on my hands, til today, and I seriously almost fell big time in the shower today, it was hard, but I caught myself.
OH! Another thing. I have never had a yeast infection in my LIFE!! Never!! And since this 'episode, flare' whatever it is. I got my first yeast infection in August and it's still here, not going away, multiple rounds of diflucan and creams and douches and it's here. I even cut out most yeast, and added soooo many new homeopathics, food wise and supplement wise, and it's still not completely gone.
So, my big questions would be:
1) Are my symptoms really that atypical? Does anyone elses go in waves, slowly building up to a peak, then back down?
2) The discoloration in my hands at the peak of it. Has anyone else had that?
3) Does anyone else have the yeast infections BEFORE they got treatment for their MS, (that I hear can cause them)?
4) Am I just supposed to sit here and wait now for another flare to get diagnosed?
5)If I don't have another flare or crescendo of a flare by Feb (my next appt time), if they do a re-do MRI and my first Spinal, could they still tell if it is MS? Won't my lesions not be 'bright' anymore if I am not flaring? Or have new ones? Can they still see the demylenation in the Spinal if there is not an active flare?
Okay, I've bothered you all enough. Thanks so much for any help/guidance you can give me! :-)
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