Awe, Bless you Ginnie and Abby!! What a comfort. I felt so much better finally getting some questions out and then the replies bring so much relief Just speaking about it out loud (if you consider this out loud and I DO :-) is a relieving feeling.

I will try to answer both of your questions in order:

"Have you had more than several neurologists look at your fiancee'.?"

He has seen two different neurologist. The first one did the MRI and mestinon. Then that doctor referred us to MG/ALS specialist in our home town. This neuro is very active in ALS and has numerous patience with MG. (According to him) So, I feel we are in great hands. I am unsure of how many patients (in both ALS and MG) he has that start with speech problems. Getting my fiance to go to another doctor may take an act of congress. He has never been one to get sick or go to a doctor, so this alone is a daunting feat. I cant get him to go back to the neuro to describe the worsening of his conditions.

Mestinon questions: " How much was he taking? Did he try a much lower dose?"

He start on 60mg, three times a day then lowered to only twice a day. After this is when he was taken off. What is the "norm" dosage?

It was said that the swallowing and breathing (He has told me and I have noticed him getting out of breath easier, but this comes and goes) is serious, that is what scares me. This man is like all others...stubborn and will not admit to feeling any discomfort. I am frightened of it getting to a very serious point before he does anything about it. I can't seem to impress upon him how important all this is. He says he is just "getting older" and these symptoms are age related. He is only 48.

How long after starting the prednisone should it take to start seeing a difference? He is scared of this drug and getting him to start it has been a fight too. He gets upset because he is being treated for something he has not been diagnosed for. Through reading it seems without clear indication of blood work, this is the right step to take. I have heard of the tensilon (sp), have any of you had that?

Bless you both for such warm welcomes!! What wonderful ladies you both are. I am giddy inside to have found you both!!

It's great that he's seeing a doctor with experience in both ALS and MG.

Here's what I know about Mestinon doses. Yes, 60 mg. at a time is the typical starting dose. Mestinon has a really short half-life. About four hours after you take it, it's already working only half as well. That's why when people go to their doctors and say that the Mestinon works well, but only for the first couple of hours after they take it, the doctor will increase the frequency instead of increasing the dose. If 60mg was too high a dose for your fiance, I don't know if that would mean he'd feel stronger after it wore off a bit or not.

I know this is emotionally extremely hard, both for your fiance who is strong-willed, and for you who have to struggle to get him to go to a doctor. Being undiagnosed, with scary symptoms, is emotionally brutal. You feel like if you just knew what was going on, you could be strong and face it, but how can you face it if you don't know what you're facing? I hope you get answers soon.

Abby

Thank you so much, Abby!! Yes, it is emotional roller coaster. This helps talking to others. I will be more firm with him after today. Hearing these responses, I can no longer tell myself it isn't that serious. Reading that some of the more serious symptoms can come on within an hour is eye opening. I thought this was more gradual.

When he took the mestinon in an hour he sounded worse. He actually sounded better and then would get worse again once he took his next pill.

This entire experience is eye opening. I always thought...you go to the doctor, they tell you what is wrong, you then fix it. Nope...not like that at all!!

Thank you, again!!

Hello.

I wanted to let you know that I started out on 60 mg two times a day and it was way too much, made me twitch all over and made my muscles so tight I had difficulty bending my body to sit down. It was scary. I am one of those people who only needs a very small amount of Mestinon, the most I can tolerate it one 60 mg pill split up and taken in small amounts through the day. Currently I am taking 1/8 of a pill at a time and this works best for me. I suspect that if I had taken three pills in a day I would have ended up in the hospital. We are all different as far as dosage needed.

I also get worse symptoms if I take a full pill, it is too much for me, maybe he is the same. Maybe his doctor will give him permission to try cutting the pills in halfs or fourths. When I was taking full pills I was at my best shortly before the next pill, but even then I was better off than without mestinon at all.

I hope this information is helpful.

Jana, I have read so much on both ALS and MG and I would love to hear the story of your friend that you followed. Is there a site (like a blog) where I could read about him? Thank you for the two sites..I have read a lot, but had not seen those two site. My main reading after doing the "Dr. Google" thing was on a another ALS Forum and that has been very informative. Too afraid to post at this point over there. It seems to gain MANY people seeming to want to have ALS. And I do not want to come off as a "looking for a disease" kind of person. Thank you for your prayers...We can go through anything as long as we are going through it with our Father.

Desert Flower, YES!!! That does help. I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead. (((I hope I do not have this wrong, when he gets home from work, I will ask him.)))

The encouragement this has brought me today is unreal. Blessings to each of you that respond...you are WONDERFUL!!

I met the family through the wife's blog. Originally, the doctors thought he had MG. It took quite a while for them to diagnose ALS. It is sort of a process of elimination. He died last spring -- only 38 years old. Soon after, his wife deleted her blog. I think it may have been too painful -- and they had children. I learned sooooo much from her blog -- they were such STRONG Christians -- and so open about what was happening to him. I think about them often.

The thing about blogs, forums, and groups for ALS patients.............you don't usually have this for very long (several years) -- and part of the time you aren't able to really communicate very well. So, I would think that many ALSers would rather be doing OTHER things -- ANYthing else but spending time on a computer talking about being sick. MGers on the other hand -- we are in this for the long haul -- normal life spans. We have years to observe our symptoms, figure out how to manage things, make friends with other MGers -- it's really just "different", if you see what I mean.

I would think that ALS patients would be more likely to have something like Caringbridge sites -- but, you would have to know their names to have access.

You might want to set a "google alert" for "ALS" and "Lou Gehrig's Disease" -- that way you MIGHT find someone's blog.

When is your fiance's next appointment? If I remember correctly, the docs start looking for muscle fascillations -- may make your guy put on the gown and watch his arms and legs with GREAT intensity. Especially the weak arm/hand.

Found some blogs:
http://kathysalsblog.com/

http://friendsofjasonorpe.org/jasonblog/

http://alsboy.com/

http://alschronicle.blogspot.com/

http://myjourneyals.wordpress.com/

Rough reading here -- maybe in these words you will find something that is TOTALLY alien to your fiance's symptoms -- and you can sigh with relief!!

Hi Jana!! Thank you so much for all this great information and the blog sites. I look forward to reading them. It will be Monday before I do..Have some what of a busy Sunday. His next appt. is in March..so we will wait and see, seems to be the norm!! I do appreciate everything you have said and looked up and posted to me!!

I have often heard less is more even with medicines. I know wonder why they would have him lower the pills to 2 and not cut the mg's in half instead.

Probably it's because most doctors don't KNOW how Mestinon really works in a person's body - that isn't a knock on doctors, but someone who hasn't ever taken Mestinon (and most people can't tolerate even a small amount of it) truly can't understand its effects on the body.

The "normal" response for medications - and we all do it "unthinkingly" - is, "If it's not working, take more; if it's working too well, take less". And for most OTC medications, you take them as needed.

Mestinon is a weird little drug, and most people in the general population would get violently ill if they took even a small amount of it. Taking too much of it will make a person - even one with MG - violently ill (and too much can lead to a cholinergic crisis); that's why they start us off with a very low trial dosage.

Because of the nature of MG and the half-life of Mestinon, it is much more important to first find out the AMOUNT of Mestinon that a person can tolerate. Once that amount has been established, you can then move on to figuring out what time interval works best for each individual patient - for some people it's 4 hours, for some it's 6 hours, for others it's 3 hours.

Each person is unique, and what works for one person will not necessarily work for any other person. MG is a highly variable disease, and because it is so rarely diagnosed, there is no such thing as a "typical" patient.

Mestinon is one of those drugs that you can take more OFTEN on one day than another (it usually depends on your level of activity more than anything else), but you CANNOT take more of at any one time. That is, if you are feeling particularly tired, you may be able to take your "regular" dosage 2 hours apart rather than 4 hours apart, but you cannot take double your dosage at one time (that could put you in a potential crisis situation).

Our bodies can only tolerate so much Acetylcholine at one time. Alice MD explains it MUCH better than I can.....

I hope that you and your loved one are able to find answers soon - and I, too, hope that IF you are, indeed, looking at a neurological condition that it is something more along the lines of MG rather than ALS.

I am glad you Like NT and the people you have already met. I come here too for that support, especially when I am scared half to death over something. It always seems to help what ever condition you have, when there is someone who listens to you, and lends comfort. I am here for you anytime you want to talk. This is my second home, and I consider the people I meet as real sisters and brothers. We do need each other. ginnie