Can everyone please tell me what your symptoms of MG are? I need some help so I know if I'm going crazy or not. My neuro told me he thinks this is what I might have. I'm hoping for an answer because if not, I am back to square one and ending up in the nut house in another few weeks I've decided.

Here are my symptoms:

Choking/difficulting swallowing food/drinks at times, slurred/difficulting talking, stuttering, problems walking, falling (and some severe falls), running into things, dropping everything, at times- not able to hold things due to weakness of hands, tremor in rt hand/tingling in fingers, facial paryalis/pain to point of inability to speak/talk/eat, migraines, severe vertigo, severe nausea- to point of not being able to eat at times, fatigue- to point of not being able to get out of bed/walk up/down stairs/do anything at all, severely weak- all over body, blurred vision and memory loss.

I've been told by a handful of MD's and specialists that a) I'm crazy b) I'm psychotic c) it is all in your head d) there is absolutely nothing wrong with you. All since 2005 these symptoms have started little by little and became worse as the years progressed.

Now, I'm starting to think mabye those doctors are right. Maybe I really am crazy and it is in my head.

Please tell me I'm not going nutty. Has this happened to any of you? How long did it take for you all to get dx'd?

Lately, I've really became depressed. I used to be a very athletic person- in shape, physically strong, up early, clean house, alert, routine, etc. Not anymore. I gained weight with an antidepressant medicine and steriods, which I found is bad for me to take. Now my body is flubbery, no muscle tone (which never ever I have had in my life), over weight, extremely weak- so bad I can't lift a laundry basket or the vacuum. Just not normal.

The only thing good that has came from this is it has made my two sons- 10 and 11 grow up more this summer. They have had to help me out more and realize that I've needed their help- regardless if they like it or not. I'm proud of how much they've grown up. It hasn't been a bad thing I guess in the long run if that has had an impact on them in that way but I've not been able to do fun things with them like I have in years past- which upsets me.

How do any of you manage being parents with this illness or symptoms?

Coffeegirl

Hi, Coffeegirl. I've got seven kids, ages 7 to 20. I'm homeschooling the younger four. My illness is not nearly as bad as yours, but I have discovered one thing. Before I got sick, no matter how much I was doing, I always felt I should be doing more. Being a mother is like that. Homeschooling is especially like that. Now, I've lost some (definitely not all...) of that guilt. If I can't do it, I can't do it, so what I can do is going to have to be enough.

Abby

Hi Abby

Wow- You are one busy mom! How you manage to keep up with all you have going on is very amazing.

Your advice was something I definitely needed to hear. It hit home with me. My DH told me tonight that we need to find other activities that I'm able to do unlike what we are used to doing (physical/outdoor)- like we have done over the last 22 years. That is a huge adjustment and I have tremendous guilt. Like you, he too, told me to get over the guilt and shame.

Take care!

Coffeegirl

Coffeegirl,

I think your husband is on to something. You're not giving up spending time with your kids--you're just finding different ways to do it. What's important is to spend time with them. It is gigantic adjustment, though--like learning to be a mother all over again, I bet. But you are so right to be proud of your sons. There's nothing good about being sick, but good things can come out of it, and having kids who are used to the idea that other people have needs, too--that's one of them.

Hang in there,

Abby

Reading this list of symptoms is very painful.

I don't think you are "crazy".

There can be a common neurological thread here, for you, and it is low B12 levels. When B12 gets into the very low range, nerves all thru the body fail to work right.

There is even a show on Mystery Diagnosis on Discovery Channel about a woman who had similar problems and became unable to function at all. She went to many many doctors over a 10+ yr period and NOT ONE tested her B12.

She finally found a woman doctor who she saw on another Mystery Diagnosis show, and went to her out of desperation. This doctor tested her, and started treatment immediately when the low B12 was found. (in the low 200's range). Our lab ranges in this country, are antiquated and the new minimum is 400.

Low B12 causes a type of dizziness, where when you close your eyes, you cannot stand upright. It is a kind of vertigo. I believe it is called Romberg's Sign.
Here is my B12 thread, please read it.

http://neurotalk.psychcentral.com/thread85103.html

Many people with neuropathy have low B12. So that is why the thread is where it is.

Also I'd investigate Gluten intolerance. This problem is very common and can cause global neurological symptoms.
http://sites.google.com/site/jccglutenfree/

I have seen some posters in the past with suspected MS, really have gluten problems instead. Going on the gluten free diet, fixed them up back to normal. So please consider that as well.
Low B12 may accompany gluten intolerance because when the GI tract malfunctions and becomes inflamed, it can no longer absorb nutrients from food or vitamins. This is called malabsorption, and occurs with other nutrients as well, like other B vits, and magnesium, calcium, etc.

Wow- Everytime I come back here and read posts there is always something new to learn. I'm so thankful for that from all of you! You all are so supportive as well.

One thing that is so ironic about the Vitamin B12 situation. I've been taking it since January along with my Migraine medications including Magnesium. Not sure what to think of that. However, I've been on the low salt diet and that really didn't do much for any change in the vertigo. So, it really makes me wonder about the Gluten Diet/Celiac Disease. Hmm... That I am going to ask the Neuro on Tuesday. And, I'm going to look into it today when I'm not able to do anything but 'oh yes- sit'- because I'm not able to function like most usual days of the typical week.

At this point, I will try absolutely anything to feel better. I just woke up. Last night, I was so dizzy/vertigo that I was clining to the wall to walk. The same exact thing- when I woke up this morning. It just gets so old. The best time I feel well- Is only when I'm in the sitting position or sleeping. It is so upsetting.

Does the medicine or treatments help?

A heavy dose of Valium helps my vertigo only for about two hours but it does not help the nausea or my swallowing problem. This morning I had difficulty eating cereal. That is really disturbing. It has been one of the few foods I've not had any problems eating. Now I'm getting down to a limited variety of foods I can eat. Even though I've not lost any weight- the neuro does not think I'm - still eating a lot- but I'm not at all. My metabolism is just really screwed up from other meds I take and lack of exercise (which I am used to doing from years of habit).

Well, I am going to take advantage of feeling good- oh- yeah- that means I can take a shower and not fall down for at least five- ten minutes. And mabye do a load of laundry- but usually bending over to do that causes me to fall over. That task- is a little frightening at this point of lately. Has this happened to any of you?

If only there was a little fairy who went thru the house and waved her magic wand and clean the house, cook, get groceries and do other things that are difficult to do- wow, it would really help a lot. But that is just not reality- it was a nice thought though!!! LOL I am determined every day to set very small goals- and if I acheive those small goals then I will be happy with myself. That is what I thought thru last night when I couldn't sleep. It is the only way to survive all of these strange symptoms.

Coffeegirl

Just a hint more:

You will want to be sure you are taking methylcobalamin (incase you are failing to methylate cyano) in large enough doses, correctly.
I'd do 5mg in the morning, on an empty stomach.

For the magnesium, I hope you are NOT using Oxide form. This is basically useless.
I have a magnesium thread too...with suggestions and explanations:
http://neurotalk.psychcentral.com/thread1138.html

Thank you Mrs. D for all of the information. It is really helpful. Ironically when I have migraines- they always treat them with Vitamin B12 shots or Vitamin B12 IV fluids for an hour! Hmm... Funny huh!? This is so frustrating. Since I've taken the supplement my migraines have subsided considerably, which has been an extreme relief.

Hugs, Coffeegirl.

( And would someone please smack me if I forget to take B vitamins and other stuff I should take. )

One thing to remember is that even if you test negative for Celiac Disease, you might still be gluten-sensitive. More and more CD researchers are starting to recognize Non-Celiac Gluten Sensitivity (NCGS) as a true health condition.

The "cure" for CD and/or NCGS is a COMPLETELY GF diet. It isn't nearly as hard as you might imagine; GF foods are the fastest-growing segment of the food industry, and as more people become aware (3 million people are estimated to have CD; 2.9 million of them don't know that they have it), there will be even more choices available in the grocery stores. This isn't some sort of "fad" - this is a very real health issue, so I expect GF foods are here to stay. Many restaurants also are starting to have GF menus available for their customers with gluten issues.

Please feel free to go to my profile section and look at some of my previous comments to others (I haven't been on here long, so it's not too very many!) regarding this issue. And if you have any questions, please feel free to contact me - I just got diagnosed with MG a couple of months ago, but my daughter and I were diagnosed with Celiac Disease 2 years ago, so I've been on a GF diet ever since. Because she has Down syndrome, I've done a LOT of research on Celiac Disease and living gluten-free.

Hope this helps!