Hi Everyone, would love some ideas and feedback, thank you
 

Hello Everyone,

Wow, I'm very glad to have found this site. I've been having a really tough time with intermittent but severe muscle weakness that's been coming and going for about 8 years now along with a bunch of other odd symptoms. I've been checked out for Myasthenia, Lyme, and MS, but these have now been dismissed as possible causes. :confused:

The question of diagnosis is becoming even more important, as my partner and I are hoping to be able to have a baby within the next year or two. I am 41 now, so we don't have a lot of time, but we are concerned about the health risks and also about being able to care for the baby well enough if I get weak.

Does anyone with muscle weakness of undetermined origin who's gone through a pregnancy, childbirth, and/or child raising have any experiences or advice they'd like to share?

I will post a longer synopsis of my history in the General Health section, but in short, I have had severe weakness, slurred speech and wacky heartbeats plus very low blood pressure spells come on and last 2-4 months, once to twice a year since 2006. The first 5 of these phases seemed to be triggered by some chemical substance (first 4: hormone meds prescribed for endometriosis, last two: vaccines and antibiotics, respectively). Each time, the weakness has been very bad, I've needed a lot of care, unable to walk or hold my head up a lot of the time bed bound or needing a wheelchair, have had trouble with speech, breathing, and swallowing as well. Mestinon helps, but now MG has been ruled out and I am not sure what to do besides what I'm already doing for myself, and continue healing on my own, without medical support.

Thank you in advance for any thoughts or suggestions you may have!

All the best, T

Pregnancy and Muscle Weakness??
 

Hi, just nudging this post to ask again about pregnancy and muscle weakness.. thanks!

T

Hello Treelover
 

I don't know what others will say. I know your clock is ticking to have a baby. However, I would go to the ends of the earth if it were me, to find out what was wrong with me before I had a child. Dear Woman raising a child is such a hard job, even when you feel good. Also there is the issue of genetics? I think I would have to know for sure that I was OK and in fit condition to carry a baby and raise it. This is the biggest decision in your life you will ever make. My own labor was 36 hours, and I was physically fit. You will need all your strength in that dept. Have you tried Mayo Clinic? This is where I got my unusual DX. They were fantastic to me. I am adopted, and my genetics are unknown, perhaps I should have gone for testing myself. I do wish you all the best in whatever decision you make. I will keep you and your husband in my thoughts and prayers. ginnie:grouphug::hug:

Hi. I hope we don't get beaten up over this but when I read what Ginnie wrote, I said to myself 'that's the first thing I thought".

Of course, this is absolutely your personal business but to be fair to the unborn child, he or she REALLY needs your undivided attention. Why not wait a bit longer until you really have some answers? Or perhaps run this by your physician (your desire to have a child). Have you done this?. Have they responded ?

It takes a lot of energy to raise a baby and as they grow, believe me, they can test one's endurance.

I don't want to stick my nose where it doesn't belong, but I'm wondering what your doctor thinks of your wishes.

Here's hoping for a positive outcome.

Melody

Thank you Melody and Ginnie..

I appreciate your thoughts, and have certainly been concerned about taking the leap as well. I have not been to the Mayo Clinic. I'm a Canadian citizen and don't think I would be able to afford to pay for healthcare in the states, unless there's some loophole I don't know about..? I would be all over that if there were such a thing! I have been trying hard to find a diagnosis for 8 years now, and am still looking. I have spoken with my doctors, and my GP has just asked that I think carefully and be as prepared as possible before taking any steps in that direction.. my neuromuscular guy said "Well, pregnancy is riskier than golfing, but I wouldn't let that stop you..."

*However*, both docs have said that some women with these kinds of things, weakness, ME/CFS, autoimmune things as well as endo, can go into "permanent remission" when they get pregnant, perhaps because of the inherent "immune system reboot" that happens in the mother to ensure the new life is protected, if there is autoimmunity involved. They have *both* had patients in whom this occurred..

I first learned of this phenomena when phoning for information one day a year or two ago, and I happened upon a woman who like me, had had pretty much the same symptoms appear and disappear for a while, and could find no diagnosis. At one point she was travelling in the Dominican Republic with her boyfriend, and had a doctor there ask if they were in a happy, stable relationship, because if having children was something they were considering anyhow, it could help her to get pregnant. She said they had a good talk and decided to try. Sure enough, it worked, and she's never had it since. So I asked my doctors about it, and they confirmed it does happen with some women.

I know that in itself is not enough of a reason to try it, just in the hopes of getting cured, but because I really do want to have a child anyhow, this possibility along with the timing factor has me considering it more seriously. I know I'd have to be in a state of reasonable good health to start, and would choose a time when I'm strong and feeling good to begin trying. I'm starting a 10 month course of immune-boosting kundalini yoga training this month, and am going to be doing whatever I can with regard to diet, sleep, meditation, etc to get myself as healthy as I can. I'd also coordinate a plan for help and support from my friends and family should I get sick during the pregnancy or after the birth. I know I'd have some help. But I'm going to take the year and see where I can get to before making any moves.

I'd still love to hear from any other women with thoughts, feelings, or experiences to share on this topic. :grouphug:

Many thanks, T :hug:

Hi. I'm going to share something with you. For almost 8 years I have been on a health journey to heal my own health issues. The results have been dramatic to say the least. I have many friends with auto-immune issues who also do what I do. I sprout and do microgreens. I'm giving you a link to what is growing in a small corner of my living room. You don't need a college degree to do this. You just need 5 minutes a day to gives these sprouts and microgreens a drink of water. THAT'S IT.

I grow microgreens in a coconut medium (I don't like soil) and I use the same seeds for microgreens that I do for sprouting. I grow broccoli, radish, fenugreek, flax and chia. You won't find ANYTHING on the planet that is healthier for your body. After you click on my link and you see what I'm growing, go to sproutpeople.org and read up on sprouting and the astounding benefits of eating sprouts. I put them on sandwiches, I eat them in salads, etc. Sprouts aid in digestion and they have enzymes which aid your immune system.

So click on this, (Oh, I do sunflower shoots also). They are in the earlier stages in this video. Not only are these SUPER FOODS, but they have allowed me to control my diabetes, my blood pressure and more important, my weight.

So take a look and then go read about sprouting. You won't be sorry.

http://www.youtube.com/watch?v=aDtbjlmFZtM

I'm doing this so just in case you do get pregnant, your body will have such a head start it won't know what hit it.

Melody

Thank you, Melody! I've heard about sprouting and used to get them at the farmer's market, but I've always thought "I should try that myself sometime." So now you've been the last little kick in the pants that has finally inspired me to do it! You're right, and I need all the help I can get anyway, baby or no baby. I'll check out that link and get myself set up with sprouting this week. Excited..! :)

T:hug:

That's great. You dont even need to buy special equipment at first. I used collanders and mason jars. The key is to buy organic sprouting seeds from a reputable online source. I started small and bought ftom Sproutpeople.org and from Sprouthouse.com.

I have been doing this for a long time now. BEST thing i ever did.

Let me know how you do.

All the best.

Melody

Hi Treelover
 

It is great what Melody said about self healing. The sprouts are a great idea, and can only help your immune system. I just don't want you to have to go down the same path that I went on. I had two children, and then presented with auto immune diseases, yes the plural in that. I went to mayo clinic,shortly after my children were born and entered a trial study with a hospital mayo clinic sent me to. My daughter was born with problems, serious enough for two years at Barns hostpital in St. Louis. NO true DX was discovered. She had failure to thrive and neo natal seizures. My son had cancer at a young age. The whole thing was blamed on auto immune problems, stemming from me. I was adopted with no health records, hence had no idea, there was anything wrong with my genetic make up. I just want you to be healthy, and not have to go though what I did. I wound up being a single parent with more problems than I really could handle. It took every ounce of strength I had to raise my children, having medical issues of my own. It would be wise to seek genetic council. Seek guidance from your primary care physician on this. Make sure your constitution is right for this endeavor. It was so very hard dear woman. Just make sure it is the right choice for you and your husband. xxginnie:grouphug::hug::hug:

Oh Ginnie, I'm sorry you and your family have had these problems. I can imagine that must have been very difficult to deal with, especially on your own. You are a very strong woman to have hung in there and done it, even though it was hard! I hope you and your kids are doing better.

Please don't worry for me too much. I am taking this decision seriously. I am taking time to look at all the possibilities, and will ask my doc about genetic testing too. I'm going to see where I can get to this year with my health, and with diagnosis, before making any moves. I've considered foster parenting as a possibility too, if I am unable to have a child of my own. At least then, if I get ill, there is inherent support available for the child if things fall apart with my partner.

Thank you again, Ginnie.. I really appreciate you sharing your thoughts and some of your story with me! I did call the Mayo Clinic, but I wouldn't be able to afford treatment there. Plus, they don't treat Lyme disease, and I still feel it is a possibility.

:hug::grouphug: T