Mestinon
 

Well, it is TIME for my SECOND Mestinon pill of the day -- so, I can tell you what symptoms are most prominent right now:
*fatigue
*MAJOR slurring of words
*leg heaviness
*shoulders and upper arms are VERY tired
*fingers are slipping all over the computer keys

But, by FAR the WORST symptom that I WILL have IF I don't take a pill soon IS -- I will CHOKE on my lunch. So, I'm gonna go get my Mesty -- put it under my tongue to let it dissolve and get into my system -- and get something to eat.

I HAVE, upon occasion, FORGOTTEN to take a pill near mealtime (space-cadet here!!) and as SOON as I start eating, I am VERY quickly reminded that I DO have this beast called MG. The MOST fun is drinking tea and having it come out through my NOSE -- eeeeeekkkkkkkkk!!! NOT a pretty sight!!

I cannot drink liquids by tilting my head and sipping from a glass. I have to use a straw and keep my head at a normal angle. My lips are affected by MG, so it is difficult to hold onto the straw -- I do this "thing" with my lip and teeth. Whatever works, huh?!?!?

I like the Mestinon -- I used to have MAJOR constipation -- I am now REGULAR -- woooo-hoooo!!! (Yes, I know I'm weird!!) I do get some cramping with the first pill of the day -- not any worse than the Irritable Bowel that I've had for years. I can deal.

BTW, AWESOME idea for a thread, Lizzie!!!

I never knew about putting Mestinon under your tongue...... I always swallowed mine..... anyone else do it that way?

I never heard of the mestinon under the tongue either but it makes sense, I am going to try that in about 10 min :)

I take Mestinon syrup, due to my lack of stomach acid. It absorbs better than the tablets for me. It also goes to work a little more quickly.

I am on 90 - 100 mg. every three hours, round the clock.

Using an "under the tongue" drug, like sublingual methylcobalamin or nitroglycerin, is useful for a couple reasons. One, it goes to work quickly. Two, it goes directly into the blood stream and bypasses the GI tract for those with GI issues.

I don't have any side effects of Mestinon. Probably because I don't have stomach acid (if you want me to explain that, I will). I have had to go off of Mestinon for testing. When I go back on, I take the full dose. Nope, no side effects then either.

Mestinon also increases peristalsis. Peristalsis is how food is moved through the GI tract. It involves MUSCLES. The weaker them muscles, the slower food moves through. That's why on most bottles of Mestinon, there is that little sticker that says to take it with bread or crackers if it upsets your stomach. Carbohydrates "stop up" the GI tract. ;)

Symptoms off of Mestinon depend upon the day (what muscles I've been using and for how long) and time of day for me. I sometimes choke when it runs out. Don't even need to see a clock to know that my 3 hours are up - actually my 2-1/2 hours since that's when it runs out. I am noticeably weaker and short of breath.

This is a good idea, Lizzie. Everyone has slightly different experiences with Mestinon.

Annie

The Mestinon works in a rather strange way for me...

First, the regular tablets don't seem to work at all...I have to take the time-release tablets to get any effect...

I also don't experience the GI side-effects...I sometimes experience them with the time-release tablets, but I always take both with food, so this might be why...

I went to the pharmacy today to get my rx for the time-release, and it turns out that my neuro. sent a fax saying that I should be taking time-release once a day and the regular tablets 4-6 times a day. I'm so upset. I already told them that the regular tablets don't work for me, and they told me to take the time-release tablets twice a day.

The pharmacist seemed taken aback by how bad my speech and breathing are...I could barely eat...only had oatmeal, and I had to move it around in my mouth with my finger in order to chew and swallow it. My face is so weak, and everytime I say a word, I wheeze and suck in a breath...It's like my lungs are stuck...My symptoms are so bad right now because I ran out of the time-release tablets...She said that she will call my neuro. herself to tell them that I need the time-release...

I hate this disease.

Mestinon
 

Lizzie,
Awsome thread!!! I plan to keep up with this so I can see how others respond to it, especially since I have been concerned about it making my weakness worse.

Nicky,
I am so sorry you are having such a rough day. You are so young to have to deal with this horrible disease!!! I am 42 and feel like I'm too young. I can't imagine what it would have been like to be DXed in my 20's. Try and rest today and hopefully your pharmacist can get your script straightened out quickly. How nice of her to make the call herself. That says alot. Hang in there and know you are in my thoughts. BTW...I HATE this disease too!!! I am having one of those days where I feel like I have sooo much medicine in my body I can't seperate one problem from another.
Kendra

Thanks, Kendra...

I know! the pharmacist is so nice...She gave me two mestinon time-release to tide me over until tomorrow...Thank God..I'm able to move my tongue a bit now, and my face isn't so weak...

i know what you mean about the medicines...For me, the prednisone causes a lot of strange side-effects...When I was @ 80mgs, I got horrid palpitations, sweats, shakiness...My blood-sugar was really high when this would happen...Now that I'm back at 60mgs, my blood sugar isn't so bad, but I notice that my MG symptoms have gotten worse...

It does suck to have this, no matter what age you are...Sometimes, my energy levels are up and I feel like going out, or going back to work, I feel so bored staying at home all the time... but then I remember that i can't talk...I feel trapped by this...I wish there was a magic wand that would take this away. Sometimes, one thing goes away, and another things surfaces...Sometimes, I really miss my old life, and I don't want to lay it to rest...I just want it back for like 3-months, and then I'll take the symptoms back again...I've been bargaining a lot lately with someone, maybe God...But I find that it's better to forget how things used to be, because it's too sad.

Sorry I'm being so depressing:(

Edit: Hey guys, I just wanted to say sorry for being so depressing...i've been feeling pretty sick the last few days, and have been in a bad mood...I think that my MG is pretty abnormal, so for the newbies, don't worry, you will get better! Mine is just really resistant, but most people get well from the regular meds...Don't let my experience reflect how yours might be!

*hugs*
nicky

I do 180 every 3 hours,during the day, with time span at bedtime 180 tab. I do have my morning blow out, but once done with that I am good for the day, my stomache constantly gurgles though. Minor stuff though, the benifit outways the bad by far.

Mestinon
 

Nicky,
That is amazing that she gave you 2 time release to get you by until tomorrow!

I am affraid the Pred may be the root of my recent problems too. I have the shakiness, heart palps, sweating and trembling, plus it is making me sooo irritable and anxious. I feel the same way about one symptom going away and another one starting. It is impossible to know how you will feel from one day to the next. There is a definite greiving process with any disease and it is perfectly normal to want back the life we had before. I struggle with that alot too as well as the "bargaining" I hate to even admit this but when I first got sick I was convinced I had lung cancer and prayed to God that if it wasn't I would quit smoking. Well it wasn't and I feel guilty for not holding up my end of the deal. I have cut way back but am not smoke free yet. I keep thinking there is no way I am going to get better until I make good on the promise I made Him.

You are NOT being depressing, just honest. We are all part of this group so we can support others when they are having a hard time. It is very hard to stay positive when you don't feel good. Try to get some rest and relaxation and hopefully you will start feeling better again soon!!!:hug:
Kendra



!!!

Thank you!
 

Thanks for the kind words, Ladies...You are right...It's okay to mourne...I just felt bad if there are new people reading this and feeling worse because of my feelings lately...But I know that we are all in the same boat, and the symptoms are enough to make us all feel like crap from time-to-time, labels aside...

Kendra, how much prednisone are you taking? I'd definately ask about getting your blood sugar checked...I also get irritable from the prednisone too, and have noticed that my old nemesis, panic attacks (which I haven't had in years) come back every now in then...But they were much worse when I was at 80 mgs, not so bad now...

Another problem I have from the prednisone is insomnia...It's not quite insomnia because once I lay down, I fall right to sleep, but I feel like I can stay up for a very long time...I've been going to bed at like 6am everyday for the last couple of weeks...I think my poor sleep routine is contributing to feeling ill/depressed too...

Hey, Nicky, sweetie, THIS is the place where you get to BE honest -- depression and all. We've all been there -- but, we aren't all there at the SAME TIME. So, TALK it out -- get it out of your system -- don't be afraid to say EXACTLY what you think about this miserable condition and don't apologize for saying it, ok???:hug:

Mestinon
 

Nicky,
I am taking 40mg of Pred every other day. I am also taking Dapsone which is a preventative antibiotic. It is making me feel bad I think too. I take it in the morning and notice by late evening I start feeling better again. Hopefully the Dr. will call in the morning. I mentioned to his nurse I was concerned about my blood sugar so maybe he'll order the blood work. Oh gosh I feel for you with the panic attacks. My oldest son suffers from them and I can literally see the panic on his face when they are coming on. I don't have panic attacks but have noticed my anxiety has gotten much worse. I feel like I am always thinking one step ahead of myself and feel nervous and edgy. I think you are right about your sleeping habits making you feel sick and depressed. Sleep deprivation is horrible. I know if I don't sleep I simply can't cope or function. Those are the days I cry over the smallest things that normally wouldn't bother me at all. I was having a horrible time with my legs twitching at night. It would literally keep me up until the early morning. My Neuro started me on Mirapex which is for RLS and it has worked miracles. I sleep like a baby with it and feel like I am sleeping much more sound. I know there is alot of relaxing meds that can aggravate MG but Mirapex hasn't bothered me at all. You might tell your Neuro that the Pred is giving you insomnia. Maybe there is something he can give you at night to help you fall asleep that is safe with MG.
Kendra

mestinon, can't do without it, and sometimes hard to do with it.
 

what a great thread.

I have just copied something I wrote a while ago, about this magical, two-sided, frustrating, confusing and indespensible medication for me. :):confused::thud::yahoo::mf_swordfight:

by the way, I found neostigmine injections much better and more predictable when I am doing really bad. (eg-having both breathing and swallowing difficulties that make it hard to breath even with my respirator). it also works really fast (within 5 minutes).

Mestinon:

Mestinon or pyridostigmine is the medication myasthenic patients use in order to increase the amount of acetyl-choline in the synapse, and thus improve the transmission in the neuromuscular junction. This form of treatment was discovered by Marry Walker, who was an ambitious woman physician, who realized that she could use a pesticide that inhibits the enzyme responsible for the destruction of acetyl choline.
At some point I wrote a poem, describing my appreciation and gratitude for her innovative idea.

Marry Walker,

I can vision your foot steps as you so swiftly walk,
Thinking,how to help your patient that can hardly even talk.
How to help your patient that is lying there in bed,
I am sure you feel frustrated and really want to understand,
You think who you could consult; you think who you could ask,
But you realize there is no one to accomplish such a task.

And then, this bright idea comes suddenly into your head,
You stop right where you are and you think you understand.
An injection is then given to the patient in the bed
That nice young lady, that can hardly move her head.
And when you watch the movie, courtesy of "roche"
As the prostigmine goes to were it should approach

You see how within minutes, that patient that looked so sad,
Gets up and moves around, and looks so very glad.
You see how within an hour she gets up to the door,
And then can you believe it, even mops the floor.

I wonder if you thought that some time in the future, not so very far
There will be another woman physician, as ambitious as you are.
That will be able to take care of her patients, and find answers to her questions,
And all thanks to your innovation?


But, very early on, I also realized that for some unexplained reason, mestinon for me was a two-sided sword. None of the neurologists I consulted about it, was able to give me any reasonable explanation for this, in fact they mostly made me feel that I was not taking it properly and something was wrong with me. how could it be that a competent physician, can not find the way to balance her own medication properly?
Taking mestinon when I had clear symptoms, such as diplopia, significant weakness of my arms or legs, swallowing difficulties or shortness of breath, combined with a significant reduction in the level of my activity would almost always help to some degree (sometimes even dramatically to the extent of "popeye and the spinach"), this would also be seen in my respiratory tests such as MIP/MEP. The effect clearly being much more significant then by resting alone.
But if I would try to take mestinon instead of resting, and contine at the same pace, thinking that the mestinon "will take care of it", most of the times it would have the opposite effect and actually make my symptoms worse. But even then if I took another mestinon and went to rest I would experience improvement.
Whenever I tried to stop taking mestinon all together for more then a few days, it lead to an overall worsening of my symptoms. This difference was so obvious to me, as well as those around me, that the head of my department would ask me if I was doing experimental medicine again, and tried stopping my mestinon...


alice

mestinon
 

I'm new to this site, but I have been dx with mg for 3 years. My symptoms were so bad by the time I got a diagnosis that I was almost wheelchair bound. Finally after the 3rd neuro I was diagnosed.

I take high doses of mestinon 180mg 3 times a day 2 60mg short acting twice a day, I can't take the prednisone because it makes me psychotic.

Even with all of the mesitnon my symptoms are getting worse by the day,I used to have weakness in just my legs but now I feel through out whole body my mouth gets tired if I chew something for to long, I'm starting to have trouble breathing, my balance is way off.

So I need to go back to the neuro for a check up and see I need a med changed.

Has anybody else experienced the same after being on mestinon for a while?

Thanks Renee

Hi, Renee! Welcome. Another Floridian. How do you guys take that heat?

I've been on Mestinon for almost nine years. It has a bit less impact but still "works" for me.

There's always the possibility that something else could be making MG worse. The obvious culprit usually is the thyroid. There are other possible reasons. Do you have a good primary doctor too? It might be good to check with your neuro and them.

And do you have a pulmonologist? If you are having trouble breathing, you really should be assessed by a pulmy. Neuros don't do that nor do they have the equipment to do it! ;) My pulmy has standing orders for MIP and MEP (neuromuscular specific breathing tests) to be done if I get worse. It's a great arrangement that every MGer should have.

Sometimes the Timespan can "overdose" you, making you weaker. The time release is not "perfect" and you can get too much at the time you are taking the other dose of regular Mestinon. Just a thought.

I hope you can figure out what's going on. What about IVIG? Is your neuro an MG expert? If not, there is one in St. Petersburg.

Annie

Dear Nicky,

I may be wrong in what I am saying but I think that newbies want to know what to expect from their illness and not have a pink picture that is not true, and will make them feel that something is wrong with them when they don't fit. some will have full remission, but some will not. but all can eventually have a reasonably good life. even if quite different then what they thought it would be. your MG is abnormal, my MG is abnormal, so I am asking myself is there really a "normal" MG?

with time you will sort of forget how you were before. not totally, as you will still be you, but you will learn to accpet your physical dissabilities (what ever they will be) and sort of get them woven into your life.

being able to walk or not will become less of an issue. getting there will be your goal, and if you need a wheelchair for that-what the heck.

I am telling you this not only from my own experience, but from that of other patients, with MG and also other diseases.

but, this takes time and unfortunatley there are no short cuts. at least not any that I am aware of. and during that time you need all the support you can get, and also "permission" from yourself to feel really lousy, mourn your previous abilities and gradually find and build your new ones. this is entirely normal and don't let anyone tell you that it's not.

I can only speak for myself, but I am quite sure that everyone has had times of despair when dealing with all this. I definitely did.

and don't settle for only three good months. you deserve a life time of good months, and there is no reason why you should not have that, eventually, remission or not. and I think it is too early to decide that your illness is resistant. you may still have significant improvement.

alice

Renee, you will learn pretty soon that I sound like a "broken record" -- but, with you taking THAT much Mestinon -- are you drinking enough? I just take 60 mg at a time -- every 2 to 4 hours (depending on the day and my symptoms) -- but, it makes me NEED a LOT of fluid. Mestinon makes your kidneys and saliva and other secretions go into OVERDRIVE -- so, if you aren't replacing these fluids, then you may be experiencing some fatigue from dehydration. I would give that a try -- and just see if you can tell any difference.

Geez, I know I'm out of it when I don't even see a fabulous poem. That was beautiful, Alice. My family kids me that I "poop poems" but they are not eloquent like yours and are often full of humor or sarcasm.

Annie

Thanks Annie,

and I would really love to read one of them.

alice

every four hours
 

patrick here,
after all the help here so far I moved my mestinon from every eight hours when I left the hospital two weeks this Friday to every four hours even during the night.
As I have mentioned on another tread the move was brought on by a very bad throat infection.
I had a breathing crisis last Friday night.
I had not yet set my watch alarm for every four hours.
Because I was interested in a movie on tv and had my laptap on my knee I missed my timefor taking dose.
I decided to go to bed and as I went to leave the computer down, my chest felt like someone was standing on it and my throat was closing.
Luckily I had the mestinon beside me and a drink of water.
After 20 minutes breathing started to improve and after an hour fully recovered.
Decision taken mestinon is needed to breathe,my life not the consultants.
Ever since apart from one incident ,when I forgot again,breaathing is normal,no wheezing and no feet on my chest.
My concentration on my dose at the moment is on breathing .
I am on sick leave from a government call centre.
I work there as a clerical officer chasing absent fathers and mothers for child maintenance.
:winky:

newbie
 

Patrick here a newbie ,
I am very sorry you experienced sucha terrible day.
What do you take besides mestinon to reduce the amount of antibodies your system is sending out to attack your sodium ions
I am currently using 60mg daily of predmsdlone.

Hey Patrick,

Welcome to the site!

I take 60 mgs of prednisone as well...I also have plasma exchanges every now and then...I used to have them every month and a half or so, but I'm trying to reduce it because I was passing out during them...

How is the prednisone working for you?

Ttys!
Nicky

Thanks Nick,
I am only in my first month after diagnosis so I believe it is too early to know.
First outpatient appointment with consultant is 7th dec.
thanks to you guys I now have my breathing under control,not identified as mg by the consultant.
He had referred me to cardio for that ,not being his area.
I had presented with heavy chest pressure at A&E.
They did ECG which was ok but my oxygen level was low .
My own General Practitioner pretty already had confirmed mg by blood tests.
When they heard this they kept me in until I saw the medical consultant on Monday.
He carried out physical tests for mg at the bedside and referred me to neuro.
When I saw neuro consultant next day he started me on mestinon and first level 10mg prednisone plus all the other meds listed on my personal posting which I am using as a log of my disorder.
Thanks once again for your welcome.

sorry nicky I have been reading your storyfrom your posts history and finding the progression of each person's case helpful in understanding more about what has happened so far with me.

Lizzie - I would love to hear the all the details for what everyone experiences with mestinon.

I take 1 1/2 to 2 of the 60 mg pills every day.

Without Mestinon I would be stuck in bed almost all the time not able to read or even roll over. Mestinon is my life saver!

I have noticed that when I take my morning 60 mg pill, I have to relax for about 1 hour since sometimes it makes me dizzy or shaky like I drank too much coffee (did someone else say that Mestinon makes them feel like this?) After talking to my doctor, he said to spread the dosage out more during the day, the only thing he stressed was to take the SAME amount every day.

Today I am cutting all my pills in half and taking 30 mg every 4 hours during the day (I don't need Mestinon at night). This morning went great, no dizziness or shaking and otherwise I feel like I took the whole pill. Taking my next 1/2 pill now since I am starting to feel week (exactly 4 hours since first pill).

I have always been sensitive to medicines and need less than the average person so I think this smaller dose will feel better for me.

Also, if I take 2 pills every day then on or before day 5 I get twitchy muscles and I have to stop. 2 pills daily is too much for me so I only take 2 pills on my weak days and no more than twice per week.

Water is important for me to drink with Mestinon. If I don't drink plenty water I get stomache cramps and painful diarea and also stiff hands due to dehydration. Yesterday I didn't drink enough water and I have been regretting it terribly (staying near bathroom today and yesterday afternoon):thud:. Mestinon usually doesn't give me diarea (Note to self - drink extra water today and every day!)

I am still working out the best times to take Mestinon.

I found out that pills taken in the evening will keep me awake for about 4 hours afterward. When I first started taking Mestinon I took one in the morning and one in the evening 12 hours apart (6 am and 6 pm) and I couldn't sleep until 10 or 11 pm. After about 1 week I got the overdose symptoms of twitching, tight muscles and muscle cramps (scary!) and had to decrease my dose. It was such a relief to be able to relax and sleep after that experience. I almost did not want to take Mestinon anymore.

I feel like I am just rambling. I suppose I am just sharing any experience I can think of concerning Mestinon. I hope it is helpful to someone.:hug:

I hope everyone is feeling good today.:Dancing-Chilli:

mestinon
 

Desertflower,
I have exactly the same symptoms in the morning!!! The shaking and dizziness is scary!!! Do you also feel nervous and anxious like you are in overdrive? I really thought these symptoms were related to the antibiotic I was on but i have been off of it for 3 days and still feel this way every morning. I had a CBC done yesterday and know if everything there comes back fine it HAS to be the Mestinon. I think I am like you and do better with less and don't seem to need it at night. I take my first dose late morning but by 2:00 I can definitely tell I need my second dose. I start getting very weak feeling.

I am going to work on drinking more water. I think that may be part of my problem. Maybe that will help with some of the shakiness and dizziness. Thanks for the tip!!!:)
Kendra

Mestinon, dizziness & water
 

Kendra,
This is interesting. I do feel nervous like you described. I thought it was my PSTD (post traumatic stress disorder) acting up again even though I had it under control. I am pretty sure the shaking (not always visible) and dizziness is from the Mestinon since I am not taking any other medicines and the timing makes sense (it starts about 20 minutes after taking 60 mg of Mestinon and stops after 1 hr or so).

This morning I took 1/2 pill with no shaky/dizzy/nervousness and 4 hours after I took another 1/2 and I did feel a little shaky/dizzy and nervous too, but not as much as usual with the whole pill. Maybe I need to go a little longer between half doses. Now I am relaxing today since I don't feel so great and that may make me need a little less Mestinon. This is my first day with the 1/2 pill thing so I will continue it and let you know how I am doing sometime in about 1 week. It is hard to judge the effects of medicine with 1 day only. I am writing down the results of my 1/2 pill experiment until I find a dosage and timing that works best.

I don't like this shaky/dizzy feeling or the nervousness that I see now may be the Mestinon as well. But I will live with it if that is what it takes since it is better than being bedridden.

I will pay attention to the timing of the nervousness since I am not sure when it happens only that I have been feeling nervous since I started Mestinon. I though it was just the added stresses that go along with MG making me get PTSD again.

Water helps I am sure of that...going to get more water right now. The shakiness and dizziness I think can be caused by dehydration and not enough water to the kidneys.

Something as simple as taking a pill can become so complicated, it actually makes me laugh.

Thank you:hug:

mestinon
 

DesertFlower,
I totally knowwhat you mean about the shaking not being visibe. It feels like it should. I told my Dr. that I feel like I should be physically trembling but you can't see it always. I am anxious to hear if you find a steady dose that seems to work for you. I like the idea of writing down times and results so you can lok back. I think I will try that too. One other symptom I have been having alot is when i feel dizzy my eyes feel like they are shaking too. I feel so dizzy sometimes that I have to sit down for fear of passing out. It is very scary when it happens.

Yeah I guess we have to laugh about the meds or we would drive ourselves crazy for sure!!! I hate to think it is the Mestinon but am starting to think it has to be. I hope for you it is so you don't have to battle your PTSD on top of everything else. I know I have mentioned before that my 16 year old son was in a 4 wheeler accident 2 years ago. He was going up a hill and it fell back on his face and broke every bone except his chin. He has had 3 reconstructive surgeries and was left with nightmares and PTSD also. It is so hard to watch! Luckily with the help of several professionals we have got it under control. It has been a long 2 years but when I look back at where we started we are so very fortunate.
Take care,
Kendra

Kendra,
My eyes feel like they are shaking sometimes too, such a strange feeling. They shake after taking Mestinon and also when I am getting weak and need Mestinon. It is so complicated. We do have similarities. I hope your son is doing well. PTSD is not fun and I do not wish it on anyone. I remember so many days of going to do something simple like grocery shopping and realizing that I was terrified, heart pounding, tense muscles, heavy breathing, etc. It took a lot of work to re-train my brain to know that these activities are not dangerous. I hope it is the Mestinon causing my recent nervousness. I talked to my MG doctor about it and he said to go back to my therapist.

I want to clarify something for others reading this. I am adjusting my dosage per my doctor. He suggested that I try taking Mestinon at different times of the day and also to try 1/2 pills intead of whole pills but with keeping the total mg per day the same as I have been taking(90 to 120 mg per day total). Always talk to your doctor before changing your dosage since your doctor may have a reason for a specific schedule.

Here is my "broken record" -- I feel the weakness and shakiness, too -- and I DRINK more. It stops almost right away!! Overdosing for ME means that I have hot flashes and diarrhea -- so I KNOW that my weakness and shaking is NOT from overdose -- I can only guess it is something akin to dehydration. All I know for sure is this --- as long as I drink a LOT, I do NOT have this problem. I am a frequent bathroom visitor (urination) -- small price to pay for being able to swallow.

I take one pill every 2 to 4 hours during the day -- and one AT bedtime. I have NO problem with Mestinon keeping me awake. I do NOT take Timespan or any other Mestinon during the night. I take one AS SOON as I get up in the morning. I usually put the pills under my tongue and let them dissolve. (Forgive me if any of this is a "repeat" -- I tend to get "lost" in forum threads.)

Hi Patrick here.
When i take my morning dose it takes at least four pints of water to get the steroids in the system as my spleen kidneys or whatever it is cries blue murder with sharp pains on my left side .
I then continue to drink a pint an hour all day.
It is the only thing that helps.

I

That's okay, PMC! I'm glad that you're finding it helpful! I was the same way around the time I was first diagnosed- I wanted to know everything about this illness, as the symptoms can be pretty frightening/life-changing!

I think that it's great that your taking the time to really pay attention to all those things that you can control- it really helps to feel like you're in control, and to find that you are in many ways!:)

:hug:
Nicky

Patrick, Any symptom like pain in the back by the kidneys is NOT normal. Has anyone done a urinalysis on you? Don't mess with the kidneys. It can be an infection, kidney stones or lots of other things.

Jana, Do you go to the bathroom a lot only because you drink a lot of water? Polyuria (needing to go a lot) needs to be looked at if it's not from a LOT of water drinking. Is it you too who has a BP that goes up and down a lot? If so, that is a sign of dehydration (low BP) and then getting adequately hydrated (higher BP). Has anyone checked both a serum and urine osmolality on you? It shows how hydrated you are.

Any new symptom needs to be told to your primary doctor! Please.

Yes, I only go to the bathroom a lot WHEN I drink a lot. My bp has always been low. Since I've had MG -- and my bad experiences with the BIG TEN neuros -- I've had "white coat" high bp -- not REALLY high -- more like 140/85 or so. But, that is ONLY when I am IN the doctor's office -- all other times, it is 100/70 to 90/60. In my twenties, I would get so dizzy/faint from squatting or kneeling -- couldn't figure it out -- got my own bp machine. Have checked my own bp regularly ever since.

I have HUGE veins -- like MAN-sized veins. Not sure if that has something to do with it. The veins on my hand and feet look like small ropes. I used to give blood regularly -- the nurses/techs would fight over me!

BTW, I LOVED giving blood -- it made me feel GREAT. I even mentioned this to my neuro --- and finally talked him into letting me try this as a "treatment". He set up an appointment with an oncologist/hemotologist -- who went WACKO -- and thought I was INSANE -- and said that the ONLY way he would even consider such a request was to HOSPITALIZE me -- and that my insurance would NOT cover the cost!! Needless to say, it didn't happen. But, I swear -- I was still giving blood up until my dx -- and I was having symptoms for at least 2 years prior to dx.

penicillan
 

Thanks Annie,
I am taking penicillan for my first white spot throat infection which has also started sorting out the kidney infection .
I want to take you for your help paticularly inhelping me to understand my condition and the support you have given me on this site.

Taking enough but also too much?
 

Hi guys!

I know I have been MIA but I have a question. When I take 5 ml of the syrup it helps my breathing to the point where I can swim WITHOUT my oxygen, but everything else twitches like I'm overdosing. Does anybody else have that problem where it helps one thing but makes another worse?

Steph

I have very much the same problem. I take between 90 to 120 mg of Mestinon daily, but it is frustrating since the amount it takes to make most of my symptoms go away also gives me twitching & shaking & nervousness.

I have talked to my doctor about this and he doesn't have any ideal solution, other than to suggest spreading my dosage out more during the day (4x 30 mg instead of 2x60mg), so I am trying it now.

For me, if I take 120 mg every day the twitching and shaking turn into muscle cramps and pain which is too much Mestinon. I have to be careful not to take too much Mestinon, but I am so thankful for it.