fancykat
04-21-2007, 03:32 AM
Hey all:
I posted some time ago about concerning symptoms I was having. These included severe imbalance, tremors, profound fatigue, weird pain and other strange things. Well, all MRIs came back clear. And the neurologist even stated that my cervical and thoracic MRIs were "completely, utterly, normal". Yet, my exam was completely abnormal.
I had two neurologists for the price of one, so I felt comfortable in their care. Anyway. I was slated to see them again in 6 months. During that time, I became worse. It was almost as if I was walking through slowly drying cement. I felt like my whole body was shutting down, even though I knew that wasn't the case.
So I began to ponder...what were the newest medications I had been taking? Synthroid - which I couldn't do much about since I have to be on it. The other, Yaz birth control. This was originally prescribed by my gynecologist for painful periods. In desperation, I stopped the Yaz, thinking perhaps it was compounding my problems.
Within a matter of days, my neurological symptoms faded. I no longer had to hold onto the wall when taking a shower. I was no longer bumping into furniture like a pinball. The tremor was gone. I was astonished! What the heck??
So I just had my appointment with the neuro. He said he understood that I must be frustrated, and that even though the tests are not showing anything, what I was experiencing was real. And I responded, "well, let me tell you what has transpired." He was amazed. He was mystified. And he confided that he was dreading the appointment, because he thought I would be in much worse shape. So he and the other neuro performed the standard exam again, and it was much better, if not totally normal. I had the Babinski reflex and now it is normal. I had clonus, now I don't. I had gait imbalance. Now I don't. They had me walk down the hall, and on my way back, they were looking at each other, giddy with amazement. I felt like a very interesting specimen.
I am writing this because it may help others who are experiencing troubling symptoms, and who may be taking Yaz. I have another appointment in 3 months, but in the meantime, the neuros are going to look into the Yaz mystery. They did run a B12 test just to make sure I'm not low (but I think I've had one recently).
Isn't this bizarre? My gp said that sometimes menopause can cause neurological symptoms. But that would be due to a lack of hormones, not a surplus. It is possible that the Yaz could have interacted with other medications. Also, I might understand if it was some foreign chemical causing the problem. But hormones? I am concerned that perhaps some balance in my body is out of whack, and the Yaz exacerbated it. I just don't know.
So hopefully I will have an answer soon. But if you are taking Yaz and having weird issues, and are not diagnosed with MS, you might want to look into it. If anyone has any input on this, comments are certainly welcome...
I posted some time ago about concerning symptoms I was having. These included severe imbalance, tremors, profound fatigue, weird pain and other strange things. Well, all MRIs came back clear. And the neurologist even stated that my cervical and thoracic MRIs were "completely, utterly, normal". Yet, my exam was completely abnormal.
I had two neurologists for the price of one, so I felt comfortable in their care. Anyway. I was slated to see them again in 6 months. During that time, I became worse. It was almost as if I was walking through slowly drying cement. I felt like my whole body was shutting down, even though I knew that wasn't the case.
So I began to ponder...what were the newest medications I had been taking? Synthroid - which I couldn't do much about since I have to be on it. The other, Yaz birth control. This was originally prescribed by my gynecologist for painful periods. In desperation, I stopped the Yaz, thinking perhaps it was compounding my problems.
Within a matter of days, my neurological symptoms faded. I no longer had to hold onto the wall when taking a shower. I was no longer bumping into furniture like a pinball. The tremor was gone. I was astonished! What the heck??
So I just had my appointment with the neuro. He said he understood that I must be frustrated, and that even though the tests are not showing anything, what I was experiencing was real. And I responded, "well, let me tell you what has transpired." He was amazed. He was mystified. And he confided that he was dreading the appointment, because he thought I would be in much worse shape. So he and the other neuro performed the standard exam again, and it was much better, if not totally normal. I had the Babinski reflex and now it is normal. I had clonus, now I don't. I had gait imbalance. Now I don't. They had me walk down the hall, and on my way back, they were looking at each other, giddy with amazement. I felt like a very interesting specimen.
I am writing this because it may help others who are experiencing troubling symptoms, and who may be taking Yaz. I have another appointment in 3 months, but in the meantime, the neuros are going to look into the Yaz mystery. They did run a B12 test just to make sure I'm not low (but I think I've had one recently).
Isn't this bizarre? My gp said that sometimes menopause can cause neurological symptoms. But that would be due to a lack of hormones, not a surplus. It is possible that the Yaz could have interacted with other medications. Also, I might understand if it was some foreign chemical causing the problem. But hormones? I am concerned that perhaps some balance in my body is out of whack, and the Yaz exacerbated it. I just don't know.
So hopefully I will have an answer soon. But if you are taking Yaz and having weird issues, and are not diagnosed with MS, you might want to look into it. If anyone has any input on this, comments are certainly welcome...
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MSNik
04-21-2007, 11:52 AM
This is very interesting. I actually am dealing with something quite the opposite and I want you to hear about it. I have been on birth control pills for over 15 years, the time has come to get off of them and I was seriously considering a tubal.
I went to my MS specialist first, who said you can have the surger, but you MUST stay on the birth control pills because the newest studies show that the Estrogen in the pills prevents relapses and Im afraid to take you off of it.
Then, I went to my Gyn, and repeated this. He said if you are staying on the pill anyway, why do the surgery? I spent 3 months talking to people about this and everyone agreed, get off the pill, have the surgery. So, before I went as far as surgery, I decided to get off the pill on my own and see what happned. (My husband was hating this idea, but we did use every other form of Birth control. I do have MS and do take Rebif, pregnancy is NOt an option right now). Long story short, within 3 weeks of stoping the pill, I had the worst relapse ever. It took 3 weeks before I started to feel better, 2 rounds of Solu-Medrol and a hospitalization. The reason they think, is the drop in Estrogen....
With that said, I of course came clean to my doctors, my MS doc gave me "I told you so" and my GYN is waiting for the all clear to schedule the tubal (cant keep using back up birth control) and has put me back on Birth control pills...guess what? IM on Yaz.
And ive now been on it for almost 5 weeks and have not had a single problem.
What you experienced sounds vaguely like a relapse, although you are not yet dx with MS, right?? It could be any number of things...really....but if you research MS and Estrogen, you will see that the doctors have very good evidence for keeping us on Estrogen while we have MS...(I had to find out the hard way); I think its great that you have neurologists looking into this. Get your GYN involved too. Find out whats going on in your body that caused you to have symtoms whcih pointed this way...I hate to be the one to tell you this, but what you described here, sounds like at the time of your first visit you were having a relapse, which no one picked up on..and as of your second visit, where the improvements showed, you were over it. If you have Relapsing/Remitting MS, what you described fits that to a T.
OF course, it could be that you cant tolerate the YAZ, but in general, I dont think YAZ is harmful to anyone, and I do think its widely prescribed because it is a low dose Estrodial Birth Control pill, perfect for those of us with MS.
Please keep us informed. This is really interesting.
I went to my MS specialist first, who said you can have the surger, but you MUST stay on the birth control pills because the newest studies show that the Estrogen in the pills prevents relapses and Im afraid to take you off of it.
Then, I went to my Gyn, and repeated this. He said if you are staying on the pill anyway, why do the surgery? I spent 3 months talking to people about this and everyone agreed, get off the pill, have the surgery. So, before I went as far as surgery, I decided to get off the pill on my own and see what happned. (My husband was hating this idea, but we did use every other form of Birth control. I do have MS and do take Rebif, pregnancy is NOt an option right now). Long story short, within 3 weeks of stoping the pill, I had the worst relapse ever. It took 3 weeks before I started to feel better, 2 rounds of Solu-Medrol and a hospitalization. The reason they think, is the drop in Estrogen....
With that said, I of course came clean to my doctors, my MS doc gave me "I told you so" and my GYN is waiting for the all clear to schedule the tubal (cant keep using back up birth control) and has put me back on Birth control pills...guess what? IM on Yaz.
And ive now been on it for almost 5 weeks and have not had a single problem.
What you experienced sounds vaguely like a relapse, although you are not yet dx with MS, right?? It could be any number of things...really....but if you research MS and Estrogen, you will see that the doctors have very good evidence for keeping us on Estrogen while we have MS...(I had to find out the hard way); I think its great that you have neurologists looking into this. Get your GYN involved too. Find out whats going on in your body that caused you to have symtoms whcih pointed this way...I hate to be the one to tell you this, but what you described here, sounds like at the time of your first visit you were having a relapse, which no one picked up on..and as of your second visit, where the improvements showed, you were over it. If you have Relapsing/Remitting MS, what you described fits that to a T.
OF course, it could be that you cant tolerate the YAZ, but in general, I dont think YAZ is harmful to anyone, and I do think its widely prescribed because it is a low dose Estrodial Birth Control pill, perfect for those of us with MS.
Please keep us informed. This is really interesting.
Bearygood
04-21-2007, 12:27 PM
My gp said that sometimes menopause can cause neurological symptoms. But that would be due to a lack of hormones, not a surplus.
I find this interesting as well. I experienced bouts of vertigo in my 30s over a period of about a year. I now know it's possible that this was MS related and I distinctly recall that EVERY single time it happened it was right before my period. My optic neuritis (which is what precipitated my current visits to doctors and subsequent MS diagnosis) also happened at a similar or same point in my cycle.
I have really been wondering about hormones/hormone balance and a potential relationship to MS (or MS symptoms) and did find some stuff about it on the internet. Nik, could you explain more about the estrogen link?
fancycat, good luck to you. I hope you find your answer soon. That said, it sounds like you might have discovered it yourself... there is so much about all this stuff no one knows! No matter how good or accurate the empirical basis is, I believe we all still have to really listen to our own bodies. (By the way, I am also hypothyroid and although it doesn't sound like it's the synthroid, some of the symptoms you cited can occur when your dose is not correct.)
I find this interesting as well. I experienced bouts of vertigo in my 30s over a period of about a year. I now know it's possible that this was MS related and I distinctly recall that EVERY single time it happened it was right before my period. My optic neuritis (which is what precipitated my current visits to doctors and subsequent MS diagnosis) also happened at a similar or same point in my cycle.
I have really been wondering about hormones/hormone balance and a potential relationship to MS (or MS symptoms) and did find some stuff about it on the internet. Nik, could you explain more about the estrogen link?
fancycat, good luck to you. I hope you find your answer soon. That said, it sounds like you might have discovered it yourself... there is so much about all this stuff no one knows! No matter how good or accurate the empirical basis is, I believe we all still have to really listen to our own bodies. (By the way, I am also hypothyroid and although it doesn't sound like it's the synthroid, some of the symptoms you cited can occur when your dose is not correct.)
SRSuper
04-21-2007, 12:46 PM
hey fancy-
i saw a nutritionist who said that b/c basically sucked the nutrients out of you. i always felt pretty good on b/c, but when i got off it and started taking magnesium, it was incredible. my symptoms still progressed but they were sooo much more manageable and interfered with my life less.
i hope you're doing well in chitown! i just went to the UofC neuro dept. good guys there.
i saw a nutritionist who said that b/c basically sucked the nutrients out of you. i always felt pretty good on b/c, but when i got off it and started taking magnesium, it was incredible. my symptoms still progressed but they were sooo much more manageable and interfered with my life less.
i hope you're doing well in chitown! i just went to the UofC neuro dept. good guys there.
Bearygood
04-21-2007, 02:25 PM
Ah, I just found a really interesting site that talked a little about progesterone; that there are studies indicating that symptoms worsen when the progesterone to estrogen ratio is low. (Nice to know this wasn't my imagination!) Also talked about a possibility (citing a study in animals) that progesterone may promote the formation of new myelin sheaths. I know there's more work to be done on this but it's very interesting!
fancykat
04-22-2007, 12:26 AM
Wowee...thanks for the input. MSNik, thank you for sharing your story. So when MSers talk about an aggravation of symptoms prior to their period, is this the same as what you are talking about? Or is your circumstance even a departure from the norm?
I am still scratching my head over this one. One of the neuros asked me if I thought it was a coincidence that I improved, but I told him stopping the Yaz and the cessation of symptoms were just too aligned. However, I won't completely rule out the possibility that there is another cause, or that MS might still be lurking.
I have been on birth control before. Ortho Tri-cyclen for years - never had a problem with it. But I took a break and then went back on, and I began to get terrible migraines. So I was switched to a progestin only pill. That made me feel crummy, so I got off pills altogether...until last year, when I was put on the Yaz. I've had funky side effects from meds before, but this was unlike anything I'd ever experienced.
I have to agree, that it most certainly felt and looked like a relapse when I first went into the neuro. I was an absolute mess. But being that all of my MRIs have been clear, and the physical exam now shows nothing remarkable, I am unsure if a relapse is what I was experiencing?
I don't think it's necessarily the Yaz alone. Like SRS says (hey chi buddy - glad to hear your U of C experience is good!) nutrients can be depleted. I think I read somewhere that Yaz can potentially lead to an overage (insert proper medical term here) of potassium if your kidneys are compromised. I think that's the only difference compared to other forms of bc. But I had a blood panel done when I went to the ER during my worst imbalance. It's possible that the Yaz had some freaky interaction with other meds that I am taking. Since it is a newer bc, it's possible, I suppose. But I tend to think that my own system has some part in all of this.
I just don't get it. I would certainly think adding hormones would smooth out my issues...not create scary new ones. I'm well monitored on the synthroid. And I've had thyroid symptoms before so I am accustomed to how they feel. So I'm almost positive that plays no part (unless in combination with the Yaz).
The neuros didn't mention any concern of drug interactions...and again, it's hormones, not a foreign chemical. So, okay. Now I'm just repeating myself. I really want to get to the bottom of it.
It's good to see some "familiar faces"! Wishing everyone the best
I am still scratching my head over this one. One of the neuros asked me if I thought it was a coincidence that I improved, but I told him stopping the Yaz and the cessation of symptoms were just too aligned. However, I won't completely rule out the possibility that there is another cause, or that MS might still be lurking.
I have been on birth control before. Ortho Tri-cyclen for years - never had a problem with it. But I took a break and then went back on, and I began to get terrible migraines. So I was switched to a progestin only pill. That made me feel crummy, so I got off pills altogether...until last year, when I was put on the Yaz. I've had funky side effects from meds before, but this was unlike anything I'd ever experienced.
I have to agree, that it most certainly felt and looked like a relapse when I first went into the neuro. I was an absolute mess. But being that all of my MRIs have been clear, and the physical exam now shows nothing remarkable, I am unsure if a relapse is what I was experiencing?
I don't think it's necessarily the Yaz alone. Like SRS says (hey chi buddy - glad to hear your U of C experience is good!) nutrients can be depleted. I think I read somewhere that Yaz can potentially lead to an overage (insert proper medical term here) of potassium if your kidneys are compromised. I think that's the only difference compared to other forms of bc. But I had a blood panel done when I went to the ER during my worst imbalance. It's possible that the Yaz had some freaky interaction with other meds that I am taking. Since it is a newer bc, it's possible, I suppose. But I tend to think that my own system has some part in all of this.
I just don't get it. I would certainly think adding hormones would smooth out my issues...not create scary new ones. I'm well monitored on the synthroid. And I've had thyroid symptoms before so I am accustomed to how they feel. So I'm almost positive that plays no part (unless in combination with the Yaz).
The neuros didn't mention any concern of drug interactions...and again, it's hormones, not a foreign chemical. So, okay. Now I'm just repeating myself. I really want to get to the bottom of it.
It's good to see some "familiar faces"! Wishing everyone the best
MSNik
04-22-2007, 11:26 AM
Hey FancyKat-
Your story certainly is interesting, and I hope you'll keep us updated on what you find out!
You asked me if my situation was much like MSers complaining before they get their period. It is very similar. Think about it, and this is why the studies started. If the week of our periods, and the few days before (when Estrogen levels drop) is the time when we complain the most..and IF pregnant women are protected during the pregnancy from relapses (their estrogen level is very high during pregnancy) than, doesnt it make sense that while on the pill- our bodies think we are pregnant, and while pregnant, we dont have problems? Hence, giving estrogen to MS patients, both men and women, MIGHT prove to help avoid relapses!
Thats the thinking behind this study, and you have to admit there is credence to this...however, the studies are NOT conclusive yet, they are still being done and analyzed. In the meantime, Im hearing from more and more MSers and MS docs, that if you are on the pill, stay on the pill- if you are NOT on the pill, get on the pill, or an estrogen supplement. Now, Im looking at surgery and staying n the pill...because I do NOT want a repeat of what I went thru 2 months ago. That was by far the worst relapse I have ever experienced..and if it was all due to coming off the pill and the change in my estrogen, then its not going to change my life to swallow that pill each day!
Im really interested in your results, please keep us posted and have healthy happy days..
Nikki
Your story certainly is interesting, and I hope you'll keep us updated on what you find out!
You asked me if my situation was much like MSers complaining before they get their period. It is very similar. Think about it, and this is why the studies started. If the week of our periods, and the few days before (when Estrogen levels drop) is the time when we complain the most..and IF pregnant women are protected during the pregnancy from relapses (their estrogen level is very high during pregnancy) than, doesnt it make sense that while on the pill- our bodies think we are pregnant, and while pregnant, we dont have problems? Hence, giving estrogen to MS patients, both men and women, MIGHT prove to help avoid relapses!
Thats the thinking behind this study, and you have to admit there is credence to this...however, the studies are NOT conclusive yet, they are still being done and analyzed. In the meantime, Im hearing from more and more MSers and MS docs, that if you are on the pill, stay on the pill- if you are NOT on the pill, get on the pill, or an estrogen supplement. Now, Im looking at surgery and staying n the pill...because I do NOT want a repeat of what I went thru 2 months ago. That was by far the worst relapse I have ever experienced..and if it was all due to coming off the pill and the change in my estrogen, then its not going to change my life to swallow that pill each day!
Im really interested in your results, please keep us posted and have healthy happy days..
Nikki
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04-22-2007, 12:01 PM
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l_sparkle
04-22-2007, 03:18 PM
This is one of the most informative threads I have read yet!
I've been experiencing electric shock feelings mainly in my hands and feet. It started intermitently and now it's near constant. I'm constantly tired, have diahorea, sore throat and a servere pain in my right arm, right groin and right cheek (facial!). I also cry a lot at the moment too! My head isn't too bad now, but end of 2006 I had a headache nearly every day. I'm generally run down (at the docs I did have a high temp) and am waiting for my Neuro appointment - I've had blood test and nothing albeit Cholesterol is out of the norm (odd considering I'm only 25 and live a very healthy life-style).
I've read so much on my symptoms andit looks like I could have a number of things (MS looks likely), although I had decided to stop taking yasmin! I've been on it for 3 years. Added to that I've been on the pill all in all 10 years so I thought I could do with a break and see if my symptoms get better, but apparently not... my boyf will be pleased!!
I will now stay on the pill until I get the nod to maybe change it from the neuro!
So thanks for the info and keep us informed! Also if my symptoms aren't that of MS, I'd welcome other suggestions. x
I've been experiencing electric shock feelings mainly in my hands and feet. It started intermitently and now it's near constant. I'm constantly tired, have diahorea, sore throat and a servere pain in my right arm, right groin and right cheek (facial!). I also cry a lot at the moment too! My head isn't too bad now, but end of 2006 I had a headache nearly every day. I'm generally run down (at the docs I did have a high temp) and am waiting for my Neuro appointment - I've had blood test and nothing albeit Cholesterol is out of the norm (odd considering I'm only 25 and live a very healthy life-style).
I've read so much on my symptoms andit looks like I could have a number of things (MS looks likely), although I had decided to stop taking yasmin! I've been on it for 3 years. Added to that I've been on the pill all in all 10 years so I thought I could do with a break and see if my symptoms get better, but apparently not... my boyf will be pleased!!
I will now stay on the pill until I get the nod to maybe change it from the neuro!
So thanks for the info and keep us informed! Also if my symptoms aren't that of MS, I'd welcome other suggestions. x