Your response means so much

seacoasthalo · 01-20-2012, 04:58 PM

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!!

ginnie · 01-20-2012, 08:54 PM

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

jana · 01-20-2012, 09:29 PM

Quote:

Originally Posted by seacoasthalo

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.

jana · 01-20-2012, 09:50 PM

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!!

alice md · 01-21-2012, 06:31 AM

Quote:

Originally Posted by seacoasthalo

What a wonderfully pleasant site this is.

Being one that has a timid personality already, it is hard for me to reach out for advice. I feel welcomed here before even posting.
I will try not to make this long. It is my fiance that is undergoing the "process of elimination" treatment. Since the neurologist has for sure said it is neurological, my fiance will hardly tell me anything on the health front.

This is how it all began....about a year and a half ago, he started with a slurred speech. He WAS (Give God all the Glory) a heavy drinker, so we blamed the speech problem on that. June of 2011 he put the beer down and has been sober ever since. Since then the speech has become worse (very nasally and extremely strained).. In August '11 he went to his GP, who in turn sent him to a ENT. All test done with ENT were clear, so off to the neuro he goes. First round of test were a MRI of the brain and blood work for MG. MRI - clean, blood work came back negative. Second trip to neuro - CAT- Scan of the chest and another round of more intense blood work. CAT-clean, blood work-neg. But, the neuro put him on mestinon to try for 4 weeks. The mestinon made the speech worse and twitching in his eyes. So off of that medicine. Third trip- EMG of left arm-dirty. Then the doctor performed a SFEMG of the forehead. It showed something, not sure what...but the doctor said it was not normal. Now the doctor wants him to start on 60mg of prednisone for 4 weeks. Finally (after two weeks dealing with insurance company) got this prescription filled. Since the last visit at the neuro, he has started with excess saliva. He will not tell me, but I hear him when he swallows and I will watch his throat muscles and you can tell he has a hard time swallowing. He is left handed and he hardly can open a pepsi can, sometimes he can not open it at all and has to use his right hand. He said the other day, he had pain in his throat but it was more skeletal than muscle pain.

He has no double vision, no fatigue in the muscles (if anything more stiffness), no droopy eye lid. The speech is not "only when tired", he wakes up with it.

My questions are: If this is MG, is it possible for the mestinon to make the MG worse? Can a person have MG and not be fatigued? Does MG effect the hands? Is the pain in the throat common?

Thank you for reading and please know ahead of time, your responses mean so much.

1. when I start having swallowing difficulties, it always feels like a sore throat, and I know of at least one more MG patient who has a similar experience.

2. I am not a neuorlogist, but as far as I know, it is very rare for ALS to start with bulbar symptoms (eg-swallowing, speech and/or breathing difficulties) so this does not sound to me like a likely diagnosis.

3. Mestinon can make some types of MG worse, including MuSK MG. This type of MG also tends to be much less typical and many times with very little involvement of the limbs, as compared to swallowing and breathing.

4. It is a myth that you can't wake up with MG symptoms. Sleep may be disturbed and not refreshing because of swallowing or breathing difficulties, even if those are subtle. So, you in fact " work" quite hard when you sleep.

5. you can have MG with no droopy eye-lids or double vision. It can affect any or all of your skeletal muscles at any given time.

5. Prednisone can initially make MG much worse, mostly when it is given at such a high dose. It is important that his neurologist is aware of any worsening right away.

Hope this helps,

Alice

jana · 01-21-2012, 10:37 AM

25% of ALS patients have "bulbar onset". http://en.wikipedia.org/wiki/Amyotro...eral_sclerosis
MGers are between 6% and 24%. http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

STILL praying very INTENSELY that this is NOT ALS!!!

Stellatum · 01-21-2012, 11:11 AM

Quote:

Originally Posted by jana

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

Hey, thanks, Jana. I found some statistics in this article that were encouraging for my situation: a study that shows that although Prednisone works more quickly, after three years the improvement of patients on Imuran and patients on Prednisone was comparable. Because of my personal situation and the nature and severity of my symptoms, I have been able to choose to try the slower, non-steroid treatment.

Abby

jana · 01-21-2012, 11:53 AM

Quote:

Originally Posted by Stellatum

Hey, thanks, Jana. I found some statistics in this article that were encouraging for my situation: a study that shows that although Prednisone works more quickly, after three years the improvement of patients on Imuran and patients on Prednisone was comparable. Because of my personal situation and the nature and severity of my symptoms, I have been able to choose to try the slower, non-steroid treatment.

Abby

That's great, Abby!! I call this article my MG "bible" --

. I've never met Dr. Nicolle -- him being from Canada and all -- but, I sure do APPRECIATE this handy, dandy reference!!

I'd choose Imuran over Prednisone, too. Diabetes, osteoporosis, cataracts, etc..........so many things that long term Prednisone usage can do to ya. But, some people don't have any other choice.

teresakoch · 01-21-2012, 11:57 AM

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.

suev · 01-21-2012, 06:03 PM

Welcome Seacoast - glad you found this forum. You will find that we are all quite different in the way MG effects us and our lives. For me, in the beginning, I experienced fatigue of specific arm muscles ... and not much else. Gradually it has progressed to weakness in legs and neck at times, but not general fatigue or tiredness. And I have no eye involvement.

Re: Mestinon
For me, small amounts more frequently is the trick. In the beginning, I took a tiny amount (15mg every 4 hours), now I take 30 mg every 3 hours. I tend to be quite sensitive to most medicine... but every one is different and with Mestinon it can take a while for person to find the best combination of amount and frequency. This has to be done with your doctor though - not experimenting by oneself!

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