Your response means so much
 

What a wonderfully pleasant site this is. :D 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.

Welcome to you seacoast
 

Welcome to Neuro Talk. I am glad you decided to post, and took a look around the site. You did find some good people here to help. These kinds of neuro problems can sometimes be the most difficult to diaganose. The list of symptoms he has mimicks so many different kinds of neruo problems. I would also consider a Gastroinerologist, GI, doctor, to rule out any throat problems, that would cause swallowing difficulity. I know all the search for answers is difficult. You will find lots of support while you search for answers. Just don't give up. Eventually there will be a doctor who will put all the pieces together for you, so that at least you will know what it is. Have you had more than several neurologists look at your fiancee'.? A disease specialist is another option, that some people do go to for another opinion. In the mean time I wish you all the best. I hope that alot of people will respond to you. I will keep you both in my thoughts and prayers, and hope that you can find an answer and some kind of helpful treatment. ginnie

Hi. Welcome. I'm glad you're here and asking questions. Your fiance is so lucky to have your support.

I have a few general answers to a few of your questions.

I am diagnosed with MG even though my blood tests came up negative. I was diagnosed on the basis of my SFEMG--but not until my third one. I don't take Mestinon. I am convinced it doesn't help me, though it helps a lot of MG patients. On larger doses, it makes me twitch, and it gives me cramps in my eye muscles. Like your fiance, I don't have droopy lids or double vision.

Mestinon can make MG symptoms worse if you take too much. What is "too much" varies wildly from patient to patient. How much was he taking? Did he try a much lower dose?

MG can certainly affect the hands. As for throat pain, that is not typically on the list of symptoms, but MG messes with the muscles, and strained muscles can cause pain.

You ask if a person can have MG and not be fatigued. The answer is not really (unless it's only ocular MG)--but a person can be fatigued and not realize it. MG fatigue can be so general, and creep up so gradually, that you don't know you have it. You find yourself wondering "Why am I so lazy?" and "Why don't I feel like doing anything?"

One more thing. This may or may not be MG, but you and he must be very, very careful. Trouble swallowing is considered a medical emergency. MG can tank really fast--it can go from "gee, I feel worse today than usual" to life threatening in an hour. If he is having trouble swallowing, he needs to let his neurologist know right away. If it gets worse, he needs to go to the ER. If he starts having trouble breathing, he needs to go to the ER or call an ambulance. I don't mean to scare you, but MG is unpredictable and can move really fast.

Prednisone can make MG symptoms worse for a couple of weeks before it starts helping. If he is starting Prednisone now, while his symptoms were already worsening, you need to take the symptoms very seriously. I know this is hard--you seem to be saying that he doesn't like to talk about how bad it is. But he needs to know.

Please feel free to ask more questions. It's helpful to us to feel helpful--we like to see that some good can come out of our experience with this disease!

Abby

Hi Seacoasthalo!

I am NOT a doctor -- nor do I have any medical training whatsoever. But, your fiance's symptoms sort of sound "familiar". Has the doctor mentioned ALS? In the beginning, it is VERY hard to tell the difference between MG and ALS. In fact, sometimes it takes MONTHS before they can figure it out.

I am hoping and PRAYING that ALS is QUICKLY eliminated as a possibility. But, as I've recently been told by several members of this group -- KNOWLEDGE is "power" -- so, on the "off chance" that this might be what you are dealing with...............you might want to wander over to the ALS forum and repeat your post.

You and your fiance will be in my thoughts and prayers!!! And, PLEASE keep us updated -- we really DO care!! :grouphug:

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!!

Hi Jana!! Yes, the neuro has mentioned ALS. And I may just go on and repost over there. That is the scary side of all this. Without fatigue, eye problems, and neg. blood results for MG...it is frightening. When you say familiar, are these symptoms you have?

I so appreciate this. I have kept this bottled up inside and this is such a relief!! THANK YOU ALL!!! :D

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!!

When I said "familiar" -- I wasn't talking about myself -- but, about a young man whose blog I followed for several years. He had Bulbar ALS.

Here is good website that describe the symptoms:
http://www.buzzle.com/articles/bulbar-als-symptoms.html

I'm praying REALLY hard that ALS is NOT what your fiance has!

Yes, keeping things bottled up is NOT good -- and it sounds like maybe your guy doesn't want to talk about it much?? We'll be here. :)

BTW, several members have been diagnosed with Tensilon. It typically has to be used in a hospital setting -- there can be side effects -- heart problems, I think. But, I have heard of ALS patients responding to Tensilon, so, I'm not sure if it would confirm MG in this case.
http://neuromuscular.wustl.edu/mtime/mgdx.html

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!! :D

Hi seacoast
 

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

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!!

:hug:

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

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!!!

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" -- :D. 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.

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..... :p

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. :hug:

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!

"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

Thank you so much, Ginnie. I can understand what you are saying..I have been itching to get on here today. I do appreciate everyone's words of encouragement and understanding. THANK YOU!!

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!! :)

Thank you, Alice...This is the first I have heard of there being MG and a MUSK MG...I have read about it, always thought they were the same thing!

Also, thank you for the heads up on the prednisone...it would have frightened me (if he gets worse) and I had not know this could happen!!

Yes, as far as Bulbar ALS I have read it starts in that region on only about 20% of PALS. So the percentage is low.

Thank you again!! It is so nice to know there are people out in this world willing to listen and offer advice!!

Hi, Seacoast. I had to process your post for awhile. I had a friend die of ALS too, so it's hard for me to even contemplate this disease.

There are a couple of things that bother me about his doctoring. One, he doesn't have a diagnosis yet. He's already been given Mestinon and Pred. Mestinon, as others like Desert Flower have said, is a tricky drug. It's often recommended by MG experts to take it at a lower dose at first. The dose he was given for Pred is awfully high. And if he doesn't have MG, why try it? No, I'm not saying to go against doctor's orders but you have to question why doctors do things sometimes. Pred is a very hard drug on the body and it's also very hard to get off of.

Also, while on Pred and Mestinon, the EMG's and antibody tests can and do go negative when they are in fact positive. If you don't have copies of the EMG test results, please get them. They may tell you more than the doctor has! ;)

Was this neuro an MG expert? The SFEMG is more specific for MG, however, it is not diagnostic of MG. The results have to be taken in combination with the clinical exam and other testing. Has the doctor actually said "You have MG?"

Has he seen a neuro-ophthalmologist, which is not the same as a regular eye doctor. They can assess muscle weakness of the ocular muscles and see if he has double vision. I didn't realize that I did indeed have double vision until I saw a neuro-ophthalmologist.

Have you taken any photos of his face? Can you tell if any of his facial muscles droop?

Sometimes with MG, you have to utilize a few different experts in the diagnostic process. It also helps to see a pulmonologist. They can assess if breathing is fatigable by doing the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests in addition to the "regular" pulmonary function tests. They might be able to determine if any reduction in breathing is "fixed" or "variable" and may give them more clues.

Mestinon has "normal" side effects (see PDF below). So many patients do not read drug information before they take a drug. Sometimes you can have side effects for a couple of days and then you won't. What dose did he start on?

I hope he doesn't have ALS. One thing you might want to consider, in addition to MG, is a B12 deficiency. It's very common in people over the age of 50.

Please keep asking lots of questions of doctors. Or here. When facing a serious disease, it's important to keep an eye on the details. For example, if he has MG, certain drugs can make him worse. Other things like stress, infection, surgery, hot weather, etc. can too.

One other thing they often do with MG is take a chest CT to look at the thymic gland (thymus). Some people with MG can have a tumor of it. If they "insist" on Iodine contrast, be aware that it can make MG worse too.

I hope you get answers soon. Take care.

Annie

Annie,

I one hundred percent agree with the prednisone being prescribed with out a diagnosis. The reason we have been given is that this is part of the "ruling out" process. He was first put on mestinon at 60mg three times a day. After 4 weeks, and worsening of symptoms, he was told to lower it to 30mg three times a day...still made speech worse. I do not have copies of the reading of the EMG or the SFEMG, but I will request these...this week.

He has no droopy facial muscles, from looking at pictures from two years ago until now.

I did not realize there could be double vision and he not realize it.

Thank you for the pdf, I am one of those that do not read about side effects. I will do better after this experience. He took the mestinon for about 8 weeks, not sure if that was long enough.

He did have the CT scan of the chest and that turned out fine. At that point, (I know this sounds awful) I was hoping it would show something. The worse part of all this is NOT having an official diagnosis. If it is MG, lets get moving to treat the symptoms of this disease. If it is something else, let us know so we can get moving either treating or managing the best one can. Not sure if that makes any sense at all, but it is how I feel.

At this point he is not very open with me about what he is going through mentally or physically. It is almost as if he plans to just wait to see what happens in his body...which scares me. I understand the dangers in waiting, espcially with breathing.

His doctor is over the ALS clinic in our area and does specialize in MG. I feel we are in good hands, but I question the high dose of prednisone too.

Thank you so much for taking your time to post this information to me. It is so helpful!! :D I have not heard about a B12 deficiency either. Any other suggestions, advice is so welcomed!!

I don't have enough time right now to look up everything I've read and discuss this intelligently but can someone here go through the type of MG or various types of MG (not just Musk) in which Mestinon might be contraindicated?

I am posting a link to one article for which quinidine is used for myasthenia gravis. Most people on here might refuse that med I think for any condition with which they might be "diagnosed" in addition to MG because they might expect it would aggravate their MG.

http://www.ncbi.nlm.nih.gov/books/NBK1168/

As far as statistics on this possibiity or these possibilities for your fiance, to the extent that it may originally look wrong or these may be only congenital myasthenias, well, there's at least one person on here who doesn't fit the statistics and who should have been written up in an article because of his family history...trying something which may work for a type of MG in which Mestinon made someone worse (and for which Prednisone might also be contraindicated) may be something you should ask the neurologist to consider in a last ditch attempt -- especially as everyone seems willing to experiment ... (maybe after trying adjustment of the dosage of the Mestinon and Prednisone).

I can't be sure but I have some idea that if someone had something like this and were treated as an ALS patient, that person might actually get worse and look like an ALS patient.

Had your fiance been taking any medication BEFORE these symptoms started? There are a couple of medications that can actually CAUSE the symptoms of MG. Also, there are some medications which are absolutely contraindicated with MG/ALS.

Just a thought.....

The only medicine he takes is his blood pressure meds and these he was on for years before the speech issue started. That is scary to know that there are medicines that cause these symptoms. Thank you so much for sharing your knowledge!

Ohhhhhhhh, Seacoasthalo -- he doesn't work in a place where there are chemicals -- like pesticides, does he?? That kind of stuff can bring on symptoms, too. You know like the Gulf War Syndrome? And Agent Orange?

Thanks for mentioning meds, Teresa!! Sparked one of my remaining brain cells!!! :D

The only medicine he takes is his blood pressure meds and these he was on for years before the speech issue started. That is scary to know that there are medicines that cause these symptoms. Thank you so much for sharing your knowledge!

Looks like we were posting at the same time -- so, I'm RE-POSTING!!!

Ohhhhhhhh, Seacoasthalo -- he doesn't work in a place where there are chemicals -- like pesticides, does he?? That kind of stuff can bring on symptoms, too. You know like the Gulf War Syndrome? And Agent Orange?

Thanks for mentioning meds, Teresa!! Sparked one of my remaining brain cells!!!

No, Jana he does not, but He did serve Navy for 10 years. I have read a lot on the linking of Military with MG and ALS... A shame for the ones that fought for us and then have to pay even more later in life with one of these.