Sorry to laugh at this… I said the same was occurring 30 years ago to my primary care provider… she told me it wasn’t possible. I knew every month my face went numb, and trigeminal neuralgia occurred, as a prelude to my menstrual cycle. I was also told there was no pain in MS. Also told…. My spinal cord lesions were artifact. Just wow!!
My symptoms were always significantly worse the week before my period. I would be so weak and walk so stiffly people would ask if I had a bad back. Then as soon as my period started I would noticeably ease up. I went on the oestrogen/progesterone pill and this disappeared and in fact within a month I was able to walk more easily in general. I then had five years relapse free and my walking was so much easier that people I hardly knew (like the cleaner at work) would comment that my MS must be much better. I even managed to walk 1k which I hadn't done for years! Sadly at 48 I started having relapses again (could this be menopause?). Sadly HRT hasn't had the same effect.
Merena coil has made a huge impact for the better on the quality of my love inner the past 4 years, I've been diagnosed for 8.5. Though I now understand a lot more about why my body experiences/behaves in certain ways, I now feel more and more that my body is 1 single system, I stopped trying to understand each thing and just try to put my energy into managing and living one I have the information that helps me. Everyone is different.
Initially, I agreed to try it to reduce blood loss, leading to low ferritin levels<10 usually. I have paroxysmal atrial fibrillation and low blood pressure. Heavy bleeding every month then led to increased episodes of atrial fibrillation, fainting etc.
Before the coil, like others have written, I had days of exacerbate ms symptoms eg fatigue which exacerbated balance etc. It took a while to settle into a regular pattern, but I am very glad I stuck with it to put it mildly. I still have very light bleeding, still have some exacerbation of ms symptoms (physical and cognitive fatigue and dizziness being the most impactful), but no longer feel a week has to be "written off" the way I did prior to having the coil. I do have months when I may feel like my body thinks I still have heavy periods but when I take a closer look, lifestyle factors eg stress, not being as conscious of pacing etc may explain a lot.
I would like to say that in addition to the improvements I have and continue to experience re ms/afib, it has the benefits of reliable contraceptive and supporting enjoyment of sex. Though it is a product that exists for those reasons and so as "silly" as it may sound, I did not choose it for either of those reasons but to help myself with a body that is doing pretty well to keep me enjoying life with a "bit of internal wiring" trouble. It does however support me as that person to enjoy more of life without always having to think ms first. And we all deserve a bit of that .....
I do have issues re heat and cold, certainly experience it at different times of my cycle, different central heating (work goes from freezing to boiling as far as my body is concerned), I find dressing in layers helpful so I can add/remove as fatigue worsens- this is my sign that it's affecting me, which is hard to notice when busy at work.
Cold water of the back of my neck helps, sipping cold water, having a breeze if possible.
I would have to take time off work every month my fatigue and symptom flare ups would be so bad. The marina IUD made a huge difference, a little worsening of fatigue still but that was about it. I have now switched to the mini-pill and though not quite as effective as the IUD still much better since no 7 day break. I think more needs to be done to make women aware that they don't have to have a 7 day break when taking the pill.
Yes, all women, not just us with MS, should be made aware of the possibility of skipping periods when on OCP. Competitive athletes know and do this; why on earth do we need to suffer periods at all when there's the possibility not to?
I am a women with young onset Parkinson’s and we experience the same issues of worsening neurological symptoms in week before and for some in the week of the period. I am building an app to track this and looking to do research to prove the correlation as we only have retrospective evidence from survey or single case reports. We need evidence to that we can have clinical guidelines written. Www.MyMovesMatter.com
Thank you, as usual. I also feel a bit fatigued during the first two days of menstruation, but on the other hand when I menstruate I feel that my body is "working properly", which is a good thing, so I just accept mood swings and feeling a bit worse than usual. In my personal view, it's "part of the game".
I have always had a question about what was optimal hormonal wise for MSers re contraception. So it sounds like the Mirena usually is not that systemic, even though its progesterone only, compared to a progesterone only pill which would be potentially harmful? After getting MS, I've opted for non-hormonal contraception, the copper coil, but I would rather not have periods just for life-style reasons due to my mountaineering hobbies. Is the Mirena ok because it's often not that systemic? Or is it really patient specific? I am a bit confused on that. I'd rather opt for health over convenience but if I can get both safely that is information worth having! Thank you for your high quality information.
Yes, the Mirena is designed to deliver local progesterone to the endometrium and very little to the systemic compartment. It is the most appropriate contraceptive if you want to suppress menstruation without systemic effects. If you have completed your family there are other more destructive procedures to render you amenorrhoeic.
Feb 5, 2023·edited Feb 5, 2023Liked by Gavin Giovannoni
Are those destructive procedures safe for MS? (and what are they? I wasn't aware that was possible!) I am 39, have had MS 12 years. Don't want kids. I think my biggest concern is going into perimenopause or menopause in the next few years and possible impact on MS. I really wish there was more information on hormones and MS so I am really grateful for all insights you are providing! I'd always opt for health over not having a period - that's been my approach so far, just not mess with the system with an absence of data on this and try to be otherwise as healthy as I can be.
Endometrial ablation is a procedure and is not surgery, so you will not have any cut or incision. It is done via the vagina to reach your uterus. There are several different methods
Electricity (electrical or electrocautery). In this method, your provider uses an electric current that travels through a wire loop or roller ball. The current is put on the uterus lining to destroy it.
Fluids (hydrothermal). This method uses heated fluid. It is pumped into the uterus to destroy the lining.
Balloon therapy. Your health care provider puts a thin tube (catheter) into the uterus. The catheter has a balloon at the end. Your provider fills the balloon with fluid and heats it. The heated fluid destroys the lining.
High-energy radio waves (radiofrequency ablation). In this method, your provider puts an electrical mesh into the uterus. He or she expands it. Then your provider sends an electrical current made by radio waves to destroy the lining.
Cold (cryoablation). Your provider uses a probe with very cold temperature to freeze the lining.
Microwaves (microwave ablation). Your provider sends microwave energy through a thin probe to destroy the lining.
Endometrial ablation is a procedure and is not surgery, so you will not have any cut or incision. It is done via the vagina to reach your uterus. There are several different methods
Electricity (electrical or electrocautery). In this method, your provider uses an electric current that travels through a wire loop or roller ball. The current is put on the uterus lining to destroy it.
Fluids (hydrothermal). This method uses heated fluid. It is pumped into the uterus to destroy the lining.
Balloon therapy. Your health care provider puts a thin tube (catheter) into the uterus. The catheter has a balloon at the end. Your provider fills the balloon with fluid and heats it. The heated fluid destroys the lining.
High-energy radio waves (radiofrequency ablation). In this method, your provider puts an electrical mesh into the uterus. He or she expands it. Then your provider sends an electrical current made by radio waves to destroy the lining.
Cold (cryoablation). Your provider uses a probe with very cold temperature to freeze the lining.
Microwaves (microwave ablation). Your provider sends microwave energy through a thin probe to destroy the lining.
I was diagnosed at the menopause which is when my symptoms started to worsen. Looking back I had what I now know to be my first ms symptoms at puberty. I mentioned it to my consultant but he dismissed it.
I would add blood loss = magnesium loss. Magnesium gets pulled out of storage in bone or muscle to keep blood levels level. Low magnesium = worsening spasticity plus messing up calcium/magnesium ratio.
Hello Prof G, I am due to start IUI (probably followed by IVF) treatment from next month. The drugs i will take for IUI are ovitrelle and an injection of 2.5mg letrozole. Are there any risks to someone with MS on ocrevus (since 5 years, and stable MRIs) of taking these or similar fertility drugs? Many thanks! Veronica
You are having more than intrauterine insemination or IUI, but also medication to induce ovulation. There is a suggestion that the latter may increase MS disease activity, but this conclusion is clouded by the fact that there is a publication bias against negative studies. Because you are on ocrelizumab (Ocrevus) this will keep your MS under control.
That's exactly my experience. And I experience something similar even during my menopause. I do not have menstauations anymore. But still feling not well once a month with similar symptoms. Hormons are still active, I guess?
I always feel fatigued - both physically and cognitively -during the first couple of days of my period and experience symptoms like tingling toes and fingers. Sometimes I feel like I have legs of lead, which is also the case when it is hot and/or humid.
Sorry to laugh at this… I said the same was occurring 30 years ago to my primary care provider… she told me it wasn’t possible. I knew every month my face went numb, and trigeminal neuralgia occurred, as a prelude to my menstrual cycle. I was also told there was no pain in MS. Also told…. My spinal cord lesions were artifact. Just wow!!
My symptoms were always significantly worse the week before my period. I would be so weak and walk so stiffly people would ask if I had a bad back. Then as soon as my period started I would noticeably ease up. I went on the oestrogen/progesterone pill and this disappeared and in fact within a month I was able to walk more easily in general. I then had five years relapse free and my walking was so much easier that people I hardly knew (like the cleaner at work) would comment that my MS must be much better. I even managed to walk 1k which I hadn't done for years! Sadly at 48 I started having relapses again (could this be menopause?). Sadly HRT hasn't had the same effect.
Merena coil has made a huge impact for the better on the quality of my love inner the past 4 years, I've been diagnosed for 8.5. Though I now understand a lot more about why my body experiences/behaves in certain ways, I now feel more and more that my body is 1 single system, I stopped trying to understand each thing and just try to put my energy into managing and living one I have the information that helps me. Everyone is different.
Initially, I agreed to try it to reduce blood loss, leading to low ferritin levels<10 usually. I have paroxysmal atrial fibrillation and low blood pressure. Heavy bleeding every month then led to increased episodes of atrial fibrillation, fainting etc.
Before the coil, like others have written, I had days of exacerbate ms symptoms eg fatigue which exacerbated balance etc. It took a while to settle into a regular pattern, but I am very glad I stuck with it to put it mildly. I still have very light bleeding, still have some exacerbation of ms symptoms (physical and cognitive fatigue and dizziness being the most impactful), but no longer feel a week has to be "written off" the way I did prior to having the coil. I do have months when I may feel like my body thinks I still have heavy periods but when I take a closer look, lifestyle factors eg stress, not being as conscious of pacing etc may explain a lot.
I would like to say that in addition to the improvements I have and continue to experience re ms/afib, it has the benefits of reliable contraceptive and supporting enjoyment of sex. Though it is a product that exists for those reasons and so as "silly" as it may sound, I did not choose it for either of those reasons but to help myself with a body that is doing pretty well to keep me enjoying life with a "bit of internal wiring" trouble. It does however support me as that person to enjoy more of life without always having to think ms first. And we all deserve a bit of that .....
I do have issues re heat and cold, certainly experience it at different times of my cycle, different central heating (work goes from freezing to boiling as far as my body is concerned), I find dressing in layers helpful so I can add/remove as fatigue worsens- this is my sign that it's affecting me, which is hard to notice when busy at work.
Cold water of the back of my neck helps, sipping cold water, having a breeze if possible.
I would have to take time off work every month my fatigue and symptom flare ups would be so bad. The marina IUD made a huge difference, a little worsening of fatigue still but that was about it. I have now switched to the mini-pill and though not quite as effective as the IUD still much better since no 7 day break. I think more needs to be done to make women aware that they don't have to have a 7 day break when taking the pill.
Yes, all women, not just us with MS, should be made aware of the possibility of skipping periods when on OCP. Competitive athletes know and do this; why on earth do we need to suffer periods at all when there's the possibility not to?
I've always noticed worsened symptoms during my cycle but didn't know if I was imagining it or not!
I use continuous oral contraceptive pills. They work wonders to prevent monthly misery for me
I am a women with young onset Parkinson’s and we experience the same issues of worsening neurological symptoms in week before and for some in the week of the period. I am building an app to track this and looking to do research to prove the correlation as we only have retrospective evidence from survey or single case reports. We need evidence to that we can have clinical guidelines written. Www.MyMovesMatter.com
Thank you, as usual. I also feel a bit fatigued during the first two days of menstruation, but on the other hand when I menstruate I feel that my body is "working properly", which is a good thing, so I just accept mood swings and feeling a bit worse than usual. In my personal view, it's "part of the game".
I have always had a question about what was optimal hormonal wise for MSers re contraception. So it sounds like the Mirena usually is not that systemic, even though its progesterone only, compared to a progesterone only pill which would be potentially harmful? After getting MS, I've opted for non-hormonal contraception, the copper coil, but I would rather not have periods just for life-style reasons due to my mountaineering hobbies. Is the Mirena ok because it's often not that systemic? Or is it really patient specific? I am a bit confused on that. I'd rather opt for health over convenience but if I can get both safely that is information worth having! Thank you for your high quality information.
Yes, the Mirena is designed to deliver local progesterone to the endometrium and very little to the systemic compartment. It is the most appropriate contraceptive if you want to suppress menstruation without systemic effects. If you have completed your family there are other more destructive procedures to render you amenorrhoeic.
Are those destructive procedures safe for MS? (and what are they? I wasn't aware that was possible!) I am 39, have had MS 12 years. Don't want kids. I think my biggest concern is going into perimenopause or menopause in the next few years and possible impact on MS. I really wish there was more information on hormones and MS so I am really grateful for all insights you are providing! I'd always opt for health over not having a period - that's been my approach so far, just not mess with the system with an absence of data on this and try to be otherwise as healthy as I can be.
Endometrial ablation is a procedure and is not surgery, so you will not have any cut or incision. It is done via the vagina to reach your uterus. There are several different methods
Electricity (electrical or electrocautery). In this method, your provider uses an electric current that travels through a wire loop or roller ball. The current is put on the uterus lining to destroy it.
Fluids (hydrothermal). This method uses heated fluid. It is pumped into the uterus to destroy the lining.
Balloon therapy. Your health care provider puts a thin tube (catheter) into the uterus. The catheter has a balloon at the end. Your provider fills the balloon with fluid and heats it. The heated fluid destroys the lining.
High-energy radio waves (radiofrequency ablation). In this method, your provider puts an electrical mesh into the uterus. He or she expands it. Then your provider sends an electrical current made by radio waves to destroy the lining.
Cold (cryoablation). Your provider uses a probe with very cold temperature to freeze the lining.
Microwaves (microwave ablation). Your provider sends microwave energy through a thin probe to destroy the lining.
Endometrial ablation is a procedure and is not surgery, so you will not have any cut or incision. It is done via the vagina to reach your uterus. There are several different methods
Electricity (electrical or electrocautery). In this method, your provider uses an electric current that travels through a wire loop or roller ball. The current is put on the uterus lining to destroy it.
Fluids (hydrothermal). This method uses heated fluid. It is pumped into the uterus to destroy the lining.
Balloon therapy. Your health care provider puts a thin tube (catheter) into the uterus. The catheter has a balloon at the end. Your provider fills the balloon with fluid and heats it. The heated fluid destroys the lining.
High-energy radio waves (radiofrequency ablation). In this method, your provider puts an electrical mesh into the uterus. He or she expands it. Then your provider sends an electrical current made by radio waves to destroy the lining.
Cold (cryoablation). Your provider uses a probe with very cold temperature to freeze the lining.
Microwaves (microwave ablation). Your provider sends microwave energy through a thin probe to destroy the lining.
I was diagnosed at the menopause which is when my symptoms started to worsen. Looking back I had what I now know to be my first ms symptoms at puberty. I mentioned it to my consultant but he dismissed it.
I would add blood loss = magnesium loss. Magnesium gets pulled out of storage in bone or muscle to keep blood levels level. Low magnesium = worsening spasticity plus messing up calcium/magnesium ratio.
Hello Prof G, I am due to start IUI (probably followed by IVF) treatment from next month. The drugs i will take for IUI are ovitrelle and an injection of 2.5mg letrozole. Are there any risks to someone with MS on ocrevus (since 5 years, and stable MRIs) of taking these or similar fertility drugs? Many thanks! Veronica
You are having more than intrauterine insemination or IUI, but also medication to induce ovulation. There is a suggestion that the latter may increase MS disease activity, but this conclusion is clouded by the fact that there is a publication bias against negative studies. Because you are on ocrelizumab (Ocrevus) this will keep your MS under control.
Thank you! Is the same true of IVF drugs/procedures? That will be the next step potentially if IUI does not work. Thanks.
That's exactly my experience. And I experience something similar even during my menopause. I do not have menstauations anymore. But still feling not well once a month with similar symptoms. Hormons are still active, I guess?
Somewhat worrying in light of this discussion:
https://dailyclout.io/dr-naomi-wolf-details-the-chamber-of-horrors-the-jab-poses-to-womens-reproductive-health/
I always feel fatigued - both physically and cognitively -during the first couple of days of my period and experience symptoms like tingling toes and fingers. Sometimes I feel like I have legs of lead, which is also the case when it is hot and/or humid.
Every month it's drama again, as if the life is being sucked out of you. I've tried everything but an IUD or contraception gives me migraines again
I just accepted that I'm just not feeling well two weeks a month