I forgot to mention that at times my right leg is very achy too. Anyone experience this?

Hi, Trisha please don't panic. I'm sure you don't have ALS, I like you was so sure I had ALS because I had all of the symptoms. If u click on my previous post you will see that I was so desperate, depressed, and hopeless because after so many dr's no one could tell me what was wrong with me. I had a laundry list of symptoms and no answers from dr's, but thanks to this forum i discovered that i wasn't the only one dealing with all this hell. I'm 23 months post and still dealing with symptoms but not as bad as they used to be 20 months ago. I don't know why is it taking me so long to recover compared to others; It could be that I had 2 mirenas total of 6 1/2 years. I"m still grateful that I'm alive, not fully recover but better than before. Don't stress your self, try to stay positive I know this is not easy but until today there is nothing that we could do other than stay strong. I hope this words sheer you up a little bit, this road to recover wont be easy but you are strong and you will make it.

Love
Cynthia

I have had that happen to me every month since I've had the Mirena out (4 months) Usually, I have it at my period and ovulation the worst. I also have horrible headaches, foggy brain, vision disturbances, pain and tightening in my jaw and tongue. I don't say all that to complain; only to remind you that YOU ARE NOT ALONE! I have also googled ALS, MS and many other things. I have also googled my symptoms and "diagnosed myself" with MS and ALS. I had an aunt die recently from ALS and believe me, it is an UGLY disease. I have terrified myself so many times convincing myself I have that. Two things you need to remind yourself. ONE...you did not have these symptoms before the Mirena. TWO....there are TONS of people who are experiencing the same things as you. Coincidence? Or we all have ALS? Probably not! I know exactly what you meant when you said it's not so much the physical. I have a very high pain tolerance. I can handle the pain that this piece of crap device has given me, but the "wondering when and if I'm ever going to get better" or if there's really something else wrong with me is what drives me out of my mind. Listen to your head...not your emotions. Try really hard to enjoy and be thankful for the good days and just tell yourself better days are ahead. I'm still praying for all of you!

I just read all of the posts on this thread, and I am half-laughing, half-crying. Yes, Trisha, I have that leg thing - weak/tight/funny - on my right side, and in my arm too. Sometimes in my hands. It comes and goes, and when it comes back, I start googling ALS. I have googled ALS so many times, it's ridiculous, but truly, I have so many of those symptoms.

I have been thinking about it a lot because I am having a horrible month. I'm almost 2 years post (in Nov.), but this particular problem with the right-sided weakness popped up soon after removal. I don't remember it before removal. I've had it off and on for almost 2 years. When this weakness gets bad, certain other symptoms tend to get worse too: shakiness, and a feeling of general lack of coordination in my limb movements. My muscles tremble easily with slight exertion.

I also have a few muscles that twitch and spasm on me. I am trying to outrun the ALS fear this very day. I've looked again recently at myasthenia gravis, Parkinson's, and MS. But my MRI was clear 1 1/2 years ago when I was having all of these same symptoms. So I guess it's not MS. I've had good stretches of time when the leg/arm weakness goes away. Right now, when I go down stairs, I feel like I have to pay attention because I'm not sure if my thigh muscle will go out on me, and I'll fall.

Melanderso, if you're reading this, I remember you posting recently that you tried some progesterone cream and it seems to have set you back. I took Vitex for a month and then ended up with this horrible month. I just finished my period, so that doesn't help, but I was doing awful for weeks before my period started (even after stopping the Vitex).

If my problem is not having enough progesterone, shouldn't the Vitex help? Why has it spun me out of control?

I'm having vertigo, tendonitis, headache, and fatigue like I haven't had in a year. Granted, I haven't had any hormone testing done yet ($ issues) but I'm getting REALLY close to going in. Maybe it will shed some light on this. I'm afraid to try anything else to help with hormone balance.

Is it autoimmune? Is it ALS? Is it copper/zinc imbalance? Is it just hormones? Arghh.

Just had to vent there.

Hugs to you all,
Diana