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munecagirl22

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i just have to vent, there is no where else really i can vent. I know there are many on here without and with a diagnosis of ALS/MND or something along these lines, or have been in my shoes.

I have been trying to be soo positive and stay so strong, but it always gets me down i do tell my hubbie ,but its hard for him to hear things, he already is seeing what i deal with. I know that many think i do not have ALS bc i have no actual physical loss in strength, but what about the other people who startd showing symtems years (2-5) before ever getting an diagnosed or even going to the drs just for simple, tripping or balance issues? or who have had issues and have numerous emgs and they were clean so they got the blow over or just bc of age and gender?. obvious they are lucky and have super slow progression. (well lucky is no such word uck)

I have anixety ofcourse over my issues as wouldnt anyone? and they gave me effoxer and klompians. i DO NOT have issues sleeping and they just make me loopy drugd up which i hate. They do not help at all and ive tried other depressin meds since my issues startd ,but nothing helps much i guess bc noone is getting down to the issue, (iam just not actually depressed w a chemical imbalance so meds wont work) and iam just so scared for my future and i hate takeing it out on my loved ones and iam putting off my life bc iam so scared, its so so horribe to feel this way.

I hate nights, when i think i can relax and then as soon as i lay there i feel the twitching so much more then when iam not relaxed. I hate how i think 'oh its going to be better the next day' and i get up and feel so bad, so tired after doing nothing and my legs are weak, and i have all these tremours, then i give myself a "talkin to" and i trip, and stand there and my quad muscles are just flexing from my balance issues, and how i cant wear my cute flip flops or go barefoot bc i trip even more, and when i trip i see my foot (always right?) go behind me out to the side it looks odd, I hate how i cant walk just one day without this, and why now iam haveing so much balance issues all i have to do is stand there and i sway. I hate how i can not be and feel normal anymore, and drs just say its a chem imbalance maybe?. I was never like this before

I hate how they dont take into count its something else bc iam not skinny, ive had period issues since i was 17,, thats almost 10 years and now all of a sudden neuro issues, are just catching up with me?. I hate how i feel soo badly like i do have als or mnd and nothing helps me feel that i dont, BUT the crazy thing is i also feel 'oh everyone is right i dont have it, these issues are just simple bc i still have strength after 6months', i mean 6months is a long time? iam sure i would have lost strength by now?

I hate when i see other post on here or other sites, and people have issues just like me or similar stories and DO YET HAVE IT. and i hate how some people that is just how it is and how it will always be everyones body is so so differnt, oh how i hate my calves and quads twitch so much, and the spacticity at night i never ever used to have ( that thing where ur body just jumps, when ur relaxed).

I hate this horrible diease and how it effects ANYONE in this world, its just oh so unfair. BUT THERE IS NOTHING i can DO. i know there are things i can do ,but i just want to take it all away from everyone dealing with it, it saddens me oh so deeply, rather i have this or not its impacted my EVERYDAY life for the rest of my life.

I know that i shouldnt look at sites at all or others, but i just happen to type a symtom in google (not twitching:) ) .. and another fourm alstdi came about, what a stressor,, wow,,, makes you seriously think some neuros are quacks (as suspected) some are good and do care but ive yet to find any ,but ive only seen 2.

i know know one is a dr a neuro and only can give advice on there own personal experiences o others they have read or heard of , and that i have to understand and resepct, its always nice to hear others oopinions , but noone should rely soley on that.. pretty much time will tell which sometimes does truley suck!

well thanks for listening all to me venting and no OFFENSE to any. This is why i put on this part of als support fourms bc maybe and some do and can relate to how i feel without getting mad at me .. peace, hope, and my prayers to each and everyone. :)
 
I have a bad news for you: life is so dangerous it always end badly!
That being said, the question is what will you do until it ends?

You stated there is nothing you can do, that is wrong. You can do plenty.

You refuse anxiety meds based on their side effect. Every drug have side effects, it is always about the benefice you can get versus the side effects. You are obviously really anxious. I can’t know if it is your only condition but it seems to me it is something you should address.

You hate, hate, hate… Try to love a little more and hate a little less. It will help you greatly with you anxiety.

You type symptoms on Google: if you are anxious, NEVER do that! It is of no use and you will always find several horrible diseases to feed your imagination.

Just a short story: a few years ago, my sister started to have unbalance issues. She went to her GP who sent her to several specialists every one with a theory to test. Each test came back with negative results one after an other and the symptoms continues to increase. This went like that for about 1 year. Then she finally went to a rheumatologist who already seen a case like that several years before and have been able to put a diagnosis. It was a really rare virus and it took 6 more months to get rid of it.
What did my sister do during all those 18 month? She lived, plain and simple. Not easy every day with severe unbalance issues but what could she do?

You obviously have issues. Those issues may be due only by anxiety or by something else. Until your GP figures out what is really wrong with you (his job, not yours), what will you do?
That is the only question you need to ask yourself.

Best luck to you…
 
munecagirl22

First thing I want to know, where did you get your sign in name? I am always
curious about that.

The very issues physically you are dealing with are some of the same issues
mentally you will have to deal with. The physical issues have your immediate
attention.

Now, since we are spiritual beings having human experiences, you must see
life and yourself as it really is. We are forced to examine life in a more detailed
way than if we are just sailing through life throwing up a few “Hi how are ya’s?”

Yes, we are dealing with a blind man in a dark room looking for a black cat that
isn’t there. By that I mean none of us have all the answers. Of course you know
that.

We as humans spend so much time looking for answers to temporary problems,
when in fact we have permanent problems and a permanent solution. I heard
you say you’re a praying person. You’re concern for yourself and the others
here show your compassion. It is intact.

I am not going to tell you that you have been given a gift. But, you have been
given a challenge, a challenge that will demonstrate your ability to overcome.
You sound to me like an over comer. Joni Erickson Tata is an over comer. It
didn’t come to her overnight.

Is sounds easy, but in fact it takes a God to say, “In this life you will have
tribulation, but be of good cheer, I have overcome the world.”
Does this make you feel better, of course not. We have to act our way into a
new way of feeling, rather than feel our way into a new way of acting.

As you go through life, no matter what the goal, keep your eye on the donut,
not the hole. Fill your mind with the positive aspects of thankfulness. Not
easy to do, but not impossible either.

Mun, I hope this response is helpful. I also pray for the pals and cals. Like
all Americans, we came to this land in different ships, but we are all in the
same boat now. You are so valuable to your family and community. Not
only for what you have done, but also for what you will do.

God Bless you Mun.

Jim
 
Hi, I am sorry for everyone here. I understand your frustration. I am going through similiar. I started physical therapy. I am hoping it will help me with the mental aspects also. Hugs to you.
 
The very best treatment for depression and anxiety is a healthy diet, exercise, and proper breathing. Medication should be a last resort when those three things aren't helping.

I understand exercise might be a challenge if you are unbalanced but there has to be something you could partake in. Riding an exercise bike comes to mind.

I'm not dismissing your physical symptoms or trying to over simplify but those 3 things are proven to bring relief to depression and anxiety and the only side effect is feeling better!

Put your g o o gler to work on deep breathing tequniques for anxiety. I promise if you do this regularly throughout the day you will see a reduction in your anxiety.
 
you have a great response, it is true, but it is just soo hard at the same time and God i guess hasnt given me the peace of mind yet, iam sure he will eventually but it is so hard when you try to ignore it then, since it is actualy physical well its impossible to ignore and not think of the next 6 months or even 5 years, i have always been a planner also.

Munecagirl came from my husband and others always calling me hey muneca and i remeber i got mad of people "callinge me names" haha then come to find out it means babydoll.. and they all said i and my face reminede me of it so it has stuck with me. some people dont even know me by my real name.
 
yes your right, i do a mile once an a while on the tredmil but walking is very very painful with stiff feet and i get so scared sometimes bc i seem to be more tired and twitch 10x worst in my legs so i do a light yogo to streach sometimes, and stay activ walking normally, meds i have taken the depression all the time but i dont care for klompians at all some people agress they are good i dont agree with taken them what so ever, we all have opinions but that is not the medicine for me. If it was a virus like my dr and neuro said it would have long passed or i would feel better not worst.. twitching startd since last dec.. been a while now
 
There are many things that can cause twitching, as you've been told. Your GP should be checking things like B-12 and other nutrients. Severe B-12 anemia can cause all sorts of neurological issues (and the standard test, according to my neuro, isn't enough--as my 'standard' test showed low normal but the extra test showed I don't metabolize it properly.

Auto-immune conditions can also cause neurological symptoms. All these things can take time to figure out. The fact that you have not lost ANY use in any area tends to rule ALS out.

Anti-depressants can help with all kinds of depression and other assorted symptoms. And, some medications take time to work and others take time to adjust to.

Your doctors aren't going to take you seriously if you refuse or blow off their suggestions. If you react badly to the Klonopin, ask for something else.

Find out what blood tests have been done. It took me over two years for the doctor to order tests that showed what my GP could have found 2 years ago.
 
Thanks mun, your explanation is great. Sounds like you have some great medical responses
also. We are all thinking of you. In my mind, I think I'll call you over comer. :)

Jim
 
There are many things that can cause twitching, as you've been told. Your GP should be checking things like B-12 and other nutrients. Severe B-12 anemia can cause all sorts of neurological issues (and the standard test, according to my neuro, isn't enough--as my 'standard' test showed low normal but the extra test showed I don't metabolize it properly.

Auto-immune conditions can also cause neurological symptoms. All these things can take time to figure out. The fact that you have not lost ANY use in any area tends to rule ALS out.

Anti-depressants can help with all kinds of depression and other assorted symptoms. And, some medications take time to work and others take time to adjust to.

Your doctors aren't going to take you seriously if you refuse or blow off their suggestions. If you react badly to the Klonopin, ask for something else.

Find out what blood tests have been done. It took me over two years for the doctor to order tests that showed what my GP could have found 2 years ago.

well i had all my panels done thru lab corp and they send me a bill with each lab that they did the only thing came back abnormal were the ammonia levels were somewhat high (probably all that advil i took in hs and all , i usually took highr amts then reccomended for headaches)

also she had did a differnt thyriod test, ana, cpk, and vitamin def including b-12 when i askd why she redid those test she stated exactly what you stated " bc are test are much more thurough then anywhere else". They all came back normal then she orderd then NCV/EMG upper and lower, was very quick and pain free, didnt even stick needle half way in, the tech said he had been doing it 20 yrs and only saw facilitions so neuro will have to determine the rest. From his facial expressions tho he stated i have "beautiful nerves"...

So if these test come back normal then there really wont be an explaination medically for what the heck is truly physically going on with me, time will tell tho ofcourse. If i didnt have the balance issues or the shaking just when doing something simple, i wouldnt be so scared.

Iam doing everything the drs tell me to do she told me to start exercising bc if it was chemical imbalances exercise is the best thing its been almost a month now, i startd and not everyday and some light yoga, this week i have been so much more tired i havent been able, i have been taken the depression meds effoxer is the best as ive taken depression meds for my ADD in highschool , Klompians are for anxiety attacks she told me if i felt anything werid going on or couldnt sleep, i really dont have either of those ,but i did take them for a while to see. She wont perscribe anything else as she say's its not nescessary.

Iam not the only one i know going thru these things or the uncertainity of UNDX, like neuro says sometimes things just take a while to diagnosed and i have to take her word that she is a good neuro, and not listen to what other people say on sites, tho its always laying there in the back of my brain.. maybe ill never get a diagnosed?.. that is possible. your right its probably not ALS because its been 6months and i have not lost strength in daily things that i notice and with balance issues i would think it would show a dirty emg right?.. emgs=lmn.. balnace is a lmn?.. (correct me if iam wrong) thank you for reply.. feels so good to let it all out!
 
well i had all my panels done thru lab corp and they send me a bill with each lab that they did the only thing came back abnormal were the ammonia levels were somewhat high (probably all that advil i took in hs and all , i usually took highr amts then reccomended for headaches)

also she had did a differnt thyriod test, ana, cpk, and vitamin def including b-12 when i askd why she redid those test she stated exactly what you stated " bc are test are much more thurough then anywhere else". They all came back normal then she orderd then NCV/EMG upper and lower, was very quick and pain free, didnt even stick needle half way in, the tech said he had been doing it 20 yrs and only saw facilitions so neuro will have to determine the rest. From his facial expressions tho he stated i have "beautiful nerves"...

So if these test come back normal then there really wont be an explaination medically for what the heck is truly physically going on with me, time will tell tho ofcourse. If i didnt have the balance issues or the shaking just when doing something simple, i wouldnt be so scared.

Iam doing everything the drs tell me to do she told me to start exercising bc if it was chemical imbalances exercise is the best thing its been almost a month now, i startd and not everyday and some light yoga, this week i have been so much more tired i havent been able, i have been taken the depression meds effoxer is the best as ive taken depression meds for my ADD in highschool , Klompians are for anxiety attacks she told me if i felt anything werid going on or couldnt sleep, i really dont have either of those ,but i did take them for a while to see. She wont perscribe anything else as she say's its not nescessary.

Iam not the only one i know going thru these things or the uncertainity of UNALS diagnosis, like neuro says sometimes things just take a while to ALS diagnosis and i have to take her word that she is a good neuro, and not listen to what other people say on sites, tho its always laying there in the back of my brain.. maybe ill never get a ALS diagnosis?.. that is possible. your right its probably not ALS because its been 6months and i have not lost strength in daily things that i notice and with balance issues i would think it would show a dirty emg right?.. emgs=lmn.. balnace is a lmn?.. (correct me if iam wrong) thank you for reply.. feels so good to let it all out![/QUOT

Thanks i would love to say your right ,but not iam not anywhere near allowed to be called an overcomer:).. but your very kind.. i will have to keep repeating this in my head!
 
High blood ammonia levels are serious--and potentially deadly. Is your doctor treating this? It signals a potential problem with the liver or kidneys and can cause a whole host of other problems--including muscle weakness and fatigue. If left untreated, it can cause issues within the brain itself.

And, hon, Lab Corp isn't better than any other lab. Someone can have a normal B-12 level--and still be deficient. There is a separate test that tells if it's being metabolized properly. Those symptoms would include numbness and tingling, for instance. An ANA is a general test--but there are several other tests that should be done to rule out auto-immune issues. It took two years and various doctors to find out I was not metabolizing B-12 properly and that something significant was going on with my immune system--and it wasn't through an ANA.

Assuming you have no liver disease or are not a drug abuser or an alcoholic, I'd be asking for answers for the high ammonia level. (Actually, it's not even something routinely tested--I worked as a phlebotomist for several years and rarely drew it)

Understand, I'm not saying that there is a problem with your liver or kidneys--but the ammonia level and your symptoms certainly 'fit'--and would be worth asking the doctor. Livers and kidneys are sort of important organs--and that would be a treatable condition, depending on the cause.

My point is that you're just in the beginning of a diagnostic journey. Your EMG clears you of ALS--but certainly not other conditions. Your age makes other things much more likely.
 
"with balance issues i would think it would show a dirty emg right?.. emgs=lmn.. balnace is a lmn?.. (correct me if iam wrong) "


balance issues would not show up on an emg,balance issues are due to umn dysfunction and not lmn loss.
 
High blood ammonia levels are serious--and potentially deadly. Is your doctor treating this? It signals a potential problem with the liver or kidneys and can cause a whole host of other problems--including muscle weakness and fatigue. If left untreated, it can cause issues within the brain itself.

And, hon, Lab Corp isn't better than any other lab. Someone can have a normal B-12 level--and still be deficient. There is a separate test that tells if it's being metabolized properly. Those symptoms would include numbness and tingling, for instance. An ANA is a general test--but there are several other tests that should be done to rule out auto-immune issues. It took two years and various doctors to find out I was not metabolizing B-12 properly and that something significant was going on with my immune system--and it wasn't through an ANA.

Assuming you have no liver disease or are not a drug abuser or an alcoholic, I'd be asking for answers for the high ammonia level. (Actually, it's not even something routinely tested--I worked as a phlebotomist for several years and rarely drew it)

Understand, I'm not saying that there is a problem with your liver or kidneys--but the ammonia level and your symptoms certainly 'fit'--and would be worth asking the doctor. Livers and kidneys are sort of important organs--and that would be a treatable condition, depending on the cause.

My point is that you're just in the beginning of a diagnostic journey. Your EMG clears you of ALS--but certainly not other conditions. Your age makes other things much more likely.

well everything you say makes since, i askd her why they were up high and she said she didnt know and that they were only up a little bit, and she has given me a low dose laxitive i take every night been doing this a month now. I askd her if my symtoms were related to my ammonia levels she was like no i dont think so ,but why would she have tested me for that then?. that makes no sence either

iam clueless as to what is wrong iam not sure what my emg was yet i got on the 29th ill repoost my outcome here when i get it. The ONLY thing that does worry me about the whole EMG thing is so many i have came across who have ALS have had like 3 or 4 CLEAR emgs.. even on this site, here was one i came across.

if u read thru these you can see she has clear emgs and another site alstdihttps://www.alsforums.com/forum/general-discussion-about-als-mnd/2038-got-diagnosed.html

but time will tell... i have been taken b12 sublingully twice a day since my symtomes startd along with a liqud vit d and calcium mag supplemnt.
 
"with balance issues i would think it would show a dirty emg right?.. emgs=lmn.. balnace is a lmn?.. (correct me if iam wrong) "


balance issues would not show up on an emg,balance issues are due to umn dysfunction and not lmn loss.

so then what symtoms if iam having of lmn which emgs are supposed to show would show up on emgs bc i know that emgs only show lmn not umn... ? i figured balance would so so on an emg, i guess i just "figured" bc i thought it has to do with the legs.. and should the neuro be able to see balance issues?.. bc it seems to happen to me when iam not in front of her

just when iam doing everyday standing and walking, or daily activites,
 
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