Hello Everyone,

Here is the long-winded version of my confounding health history..

I am a 41 year old woman in BC, Canada, who’s been experiencing intermittent, severe muscle weakness for the past 8 years, and as yet I have no diagnosis. I’d like to ask if anyone else has had anything like this happen to them, or if anyone has any suggestions?? Any light anyone can shed will be very much appreciated!

Also, my partner and I would like to have a baby soon as it’s getting late in the game for me at my age, but because I’ve been completely disabled for several months about 8 times now, we have concerns about the possibility of becoming worse during pregnancy and being able to adequately care for a child. I have also heard about women with chronic illnesses who have recovered through a pregnancy, but this is a big gamble to take!

I first got weak in 2006 after a laparoscopic surgery to formally diagnose endometriosis, which I’d had since the mid 90s. I had a hard time recovering from the anaesthetic, with difficulty breathing, etc, and then was just stuck on the couch for over a month afterwards. Then I was tried on a bioidentical progesterone med to slow the endo growth, and on the 2nd day after taking it, my speech became slurred and I got too weak to walk, collapsed on the floor, unable to even lift my head. My partner called the ambulance and the medics found my blood pressure very low. I was brought to ER and lay waiting for the Dr for a few hours, and during that time, recovered some energy and was able to stand again so they sent me home to follow up with my Dr, who just scratched his head and made a neuro referral.

I stopped the meds but this kept happening, weakness coming on after I tried moving around normally, getting worse, with slurred speech, resulting in collapse and also extreme thirst afterwards, weird muscle tremors here and there in my body before weak spells, heart palpitations, sometimes a metallic taste in my mouth and weird night sweats where I’d be just drenched, with a metallic odor to the sweat, to my nose. When weak, my bladder muscles wanted to give too, and then I’d be so thirsty after the spells, it was a very problematic cycle, having to pee again, so having to try and get to the bathroom would push me into another flop! :S Also, the weakness gets much worse before my menstruation, and most often improves somewhat afterwards. I could not find any answers through the system, but eventually got better and recovered near normal function, but with fatigue.

Then I was tried on a 2nd hormone med, and the same symptoms came on, although more gradually this time: feeling winded, tired and heavy after climbing the stairs, sitting down harder than intended, with leg strength giving out, etc, and then it progressed to full blown collapse as before. Stopped the med, lived with bizarre weakness for a couple of months, in and out of ER and doc offices, no diagnosis, but recovered after 2-3 months. Switched gynocologists, was encouraged to try an IUD with less hormone in it by new gyn, so gave it a whirl as endo pain was still very bad. Same symptoms came on, even more gradually until suddenly full on again, so had IUD out and again, very gradually recovered. Meanwhile more trips to ER, neuro and doc and no diagnosis.

In 2008-2009, I had a year or so of semi-decent function, not as bad fatigue. I made the mistake of thinking I was all better now, and trying a birth control medication as I was not ready to conceive with a new partner and I had heard good things about this very "low dose" Nuva Ring. Severe weakness came on within 5 days, to full collapse. This was the most severe episode and led to an even scarier incident where my breathing and swallowing was very compromised, after eating some Chinese food that had a lot of MSG in it. (I’ve since noticed MSG and other flavour chemicals in restaurant or convenience foods bring on bad headaches, dizziness and some weakness.) Got dx’d with CFS somewhere in there that year, too.

After the Nuva Ring, I still could not get help in ER, my own GP was still befuddled. My boyfriend got fed up and carried me into my GP’s office while I was in collapse, like a rag doll, so my doc could see what it was like rather than take my word for it when I was well enough to travel to his office. GP called 911 and hospital to check me in, so I had a 5 week stay and a bunch of tests done that concluded nothing. I had MS ruled out, and the Neuropsych said that while they could not dx me with a Conversion Disorder as I did not meet the criteria, they thought something psychosomatic was going on, despite the clear chemical triggers with each of these hormone meds. I started to get treated very differently by the staff. A physio seemed to delight in telling me she thought I was faking it and placed me in a dangerous position of pushing me to walk with a walker when I was too weak, and in danger of falling, even though I told her I needed the chair, she refused to bring it until I was hanging off this walker. I think she thought she’d try and humiliate me into functioning, and test her theory. Although still weak, I demanded to be checked out of hospital. After involving a social worker, I was able to return home with some home support to recover. Within 3 months was I walking around okay, and I was able to get back to work the following year, about 9 months after that. I later made a formal complaint against this physio.

The following year I recovered and worked normally for about 6 months before getting pretty fatigued after a bad cold or flu, and after a car accident, couldn’t continue working so I thought I’d try an immune system recovery program in Thailand at a yoga school in the spring of 2011. Got lined up with travel plans, including, unfortunately, 6 travel vaccines, and 10 days later I could not walk. Same symptoms as before, and quite severe, with difficulty breathing and swallowing. It felt like a boulder on my chest, and I actually thought I might die a couple of times. Again, 911, the ER, and the same runaround plus a sneering ER doc convinced I was needing attention or something. This time, just camped out at home, with home support and friends and family helping, for four months, trying natural and alternative healing means. Still very fatigued afterwards and not able to work, I thought maybe I had mercury toxicity from the adjuvant, so I did a detox. I got weak again four months after recovery in the later stages of the detox. Weakness was back for 2 months that time before a pretty decent recovery period, using nutritional therapy and heavy metal detox protocols, etc.

I was then able to go back to work, and had a pretty productive year, but got hit hard again by a flu last October, another one in January, then another car accident in January, followed by an overly lengthy (2 hr) craniosacral treatment to release the accident trauma. I had quite a few interesting neurological symptoms after the treatment, but collapsed when I tried to walk the next morning, which was also the day before my menstruation. Weakness stayed for four months, but I had more days of some function during this time, and did not have the severe breathing crises as before. **Also during this time, I saw a Dr who decided to try me on Mestinon, and Hallelujah, it helped!! Well, it didn't help as much with the more severe weakness, I was still bedbound when that came on, but I *did* have a lot more time up and around or not needing the wheelchair with the moderate weakness, so it was a lot better with the drug. It only lasts 2.5 hours though instead of the 4. Another development during this phase was ptosis, a drooping left eyelid, which resolved after taking the Mestinon.

So my neuromuscular specialist ordered the antibody tests, noted my tongue looked like it has the central muscle atrophy of MuSK antibody MG. But just yesterday I saw him and that test was negative so he is concluding I don’t have MG as the muscle nerve fibre test was also normal (although it was conducted when I did not have the weakness and I wonder if it would be different if done while weak?). He is sending me back to the Metabolic Disease Clinic for follow up. Yesterday he started questioning if there could be any psychological factors contributing to the situation, but I honestly don’t think so, and I don’t meet the criteria for these, according to the DSM 4.. there’s no stress>weakness pattern, on the contrary, it is weakness>stress! I’m a pretty healthy and happy woman when I am able bodied.. my natural state is very engaged in life, active and social. It is very depressing not to be able to be so with the fatigue and weakness, so I do see a counsellor during these times.

One other possibility I have been wondering about recently is Lyme disease, because I’d had a bizarre, huge, irregular bullseye mark taking up a giant area on my thigh in 1996 that I’d assumed was a spider bite and ignored, and then 10 years after that got the weakness. My friend was recently dx’d with Lyme and showed me the wiki page for it, and there’s a photo of a bite that looked exactly like mine, irregular and large. I’d thought Lyme bites were only perfectly round bullseyes, unlike this one. So I’ve had the two basic Lyme tests but they were negative, so it’s been parked there, but I’ve heard that late stage lyme is harder to diagnose because the spirochetes, like the syphyillis spirochetes, have corkscrewed their way deep into your organs by then and are not floating around in your bloodstream able to be detected. Here in BC there had been denial for many years that Lyme exists here, and the doctors that have argued that it is more common than thought, and gone to bat for patients who still have symptoms but don’t meet the strictly limited dx criteria, have ben intimidated out of practice and/or had their licenses removed. ☹

Another complicating factor in this, I believe, is the fact that I’ve sustained 3 concussions, which I believe has made my system so much more sensitive to everything under the sun. I've been in several MVAs, with each time a back and neck injury, with bad whiplash, etc. I have a chronic upper neck issue on the right, c-1 issues. I can’t tolerate alcohol, food chemicals, scented detergents, chemical odors etc, very easily. I have chronic vestibular dysfunction, which entails varying levels of dizziness and vertigo, and mild PTSD that shows up when I’m a passenger in other people’s vehicles mainly.

So I am taking care of myself with eating really well, with yoga, meditation, counselling, and nutritional supplementation. I have noticed quite a bit of improvement with these practices, and also use Bach Flower remedies and energy medicine, which seems to be a benefit of having a more sensitive system, at least! I am walking now after a brief recurrence last week of weakness requiring two days of taking mestinon, and I've just registered for a yoga teacher training for this next year, so I'm feeling optimistic!

I’d love to hear from anyone who’s experienced something similar, or who has any ideas or suggestions for me. Many thanks in advance, and best wishes to everyone!

Blessings to All, T