Table 1.
Subjective reports of MS subjects’ menopausal disease courses highlight a range of experiences for which few empirical data exist. All quotes provided verbatim.
| Theme | Respondent age (years) |
|---|---|
| Perimenopausal onset of MS | |
| “I have never thought about the subject but my MS really flared after meno and that was when I was dx after being so sick for 15 years” | 58 |
| “Menopause and MS were pretty much simultaneous.” | 60 |
| My first MS attack occurred 3 months after my last menstrual period and right around the time I first started having hot flashes.” | 55 |
| Effect of hot flashes on MS symptoms | |
| “When my hot flashes started in beg of 2011 everything got drastically worse. That’s the worst my symptoms have ever been. I couldn’t write or hold a, pen for, several, months.” | 37 |
| “I confused the two, especially hot flashes” | 53 |
| “About the time my menopause seemed to be bothering me (symptoms of severe hot flashes) is when my MS symptoms really started to be intensified.” | 48 |
| “A leading MS psych Ph.d thought my observation that hot flashes aggravated my MS was ridiculous but I -- 15 yrs later -- maintain they did in terms of strength” | 48 |
| Overlap of MS and menopausal symptoms, and life changes | |
| “Please keep in mind that I was not officially dx’d when I had my complete hysterectomy. I also must mention that I was busy taking care of elderly ill parents constantly and had very little time to donate to myself or to think about my own health issues.” | 49 |
| “I did not know i had MS. But did have some symptoms such as numbness, vertigo, fatigue, tingling off and on once I started menopause” | 53 |
| “I went through 2 surgeries, divorce and diagnoses all at the same time, hard to determine amount of stress, anxiety and depression and MS change.” | 45 |
| Worsening of MS-related disability after menopause, particularly surgical | |
| “Before I stopped taking birth control pill’s I was working and able to walk and houseclean etc. I had the surgery and I started to progress toward becoming completely wheelchair bound walking only by dragging and swinging my legs with the help of two canes.” | 53 |
| “Relapsing-remitting MS seemed more unstable; smaller flare-ups that the neurologist often called “decompensation” [….] Examples: numbness or tingling in hands or feet” | 54 |
| “My first noticeable relapse was July of 1995, while still menstrating. In September of 2010, after menopause, symptoms and lesions progressed rapidly.” | 49 |
| Since my hystorectomy my MS symptoms have increased and progress more rapidly Im not sure if it is due to hormone replacement or age or what | 60 |
| I didn’t have MS until 1 year after my complete hysterectomy I had it at age 29 and developed MS at 30 | 47 |
| No relationship between MS and menopause (e.g. MS onset much prior to or after menopause) | |
| “do not believe menapause cause worst symptoms. age and progession of MS more realistic considering have had over 25 years” | 50 |
| “Hysterectomy in 1986. MS diagnosis in 2011. Not sure if we can correlate them or not” | 58 |
| “I can not tell you changes when periods stopped, because I hadn’t been diagnosed with MS way back then” | 55 |
| “I have PPMS and was not diagnosed until after menopause & HRT treatment, so many of the questions may not be applicable” | 67 |
| “I was not diagnosed with RRMS until AFTER menopause and I know many other women who were also dx’d later in life.” | 57 |
| Effect of HRT on MS symptoms | |
| “None that I can tell at this point” | 49 |
| “I truly believe that stopping the hormone therapy caused my MS to be much worse. I always wonder if I had been allowed to stay on the HRT I may not be disabled as much as I am.” | 61 |
| “I am still on HRT and am afraid to go off of it even though I am 52 years old. I feel like I would rather risk the side affects of staying on it than take the risk of going off of it and have it mess with my MS.” | 52 |
| “My mother had MS. She was much worse after menopause. As for myself mine got worse immediately after surgery. Once I was on estrogen I did pretty well.” | 54 |
| “I am not taking any [estradiol] now because the insurance company refuses to pay for a more expensive brand that does help with my hot flashes which at times cause a lot of fatigue due to heat intolerance.” | 49 |
| “[HRT was] beneficial as I believe the absence of hot flashes and increased sense of well-being improved my MS symptoms caused by heat and low energy.” | 48 |
| “I always felt better during pregnancy and early on with HRT Last trial of HRT no effect” | 65 |
| “I don’t think that without HRT it would have been good at all the anxiety, hot flashes, over all horrible issues with menopause at such a young age (29) and at the time I did not realize many issues I was experiencing were MS related - I was not yet diagnosed” | 49 |