2 years of symptoms and still scared

[trfogey]

Originally Posted by horevo

Trfogey,
I understand your frustration.

As a matter of fact, you don't understand my frustration. You are simply mouthing words that other people have told you that you should say to attempt to resolve conflict. They are meaningless to you, just as the reality of ALS is meaningless to you.

And don't flatter yourself. I'm not frustrated with you. I'm just here to point out the holes in your story and to call you to account for the misinformation you are spreading. Otherwise, more recently foolish people like Kathylund might see my silence as some kind of confirmation of truth in what you are saying. You are a hopeless cause -- they may not be. That's why I dispute you -- for their sake, not yours. If you had any concern for anyone but yourself, you would realize that and own up to your foolishness. But you won't, because you don't care who else you hurt.

Originally Posted by horevo

Yes, I am well aware that ALS is a progressive disorder and I apologize if I've offended anyone by posting this. That was never my intent.

What was your intent? It's obviously not to get reassurance that you don't have ALS. Your physicians have been telling you that for nearly two years, including one as recently as today. Several people here, including two very knowledgable people who have since died of ALS -- that unpleasant reality about true ALS you ignore every time you twitch or stammer and think you have ALS -- have been telling you that you don't have ALS for nearly two years.

And it's not to find evidence that would contradict your doctors' findings over the past two years, because the diagnostic standards haven't changed. Normal clinical exams + normal EMGs still means no ALS. Benign fasciculations are still benign fasciculations. No progression == no ALS, despite what you claim to have read, because there must be demonstrable progression before a diagnosis is made.

So, what is your intent in posting here? What is it that you are looking for? Attention? Sympathy? Some reason to cling to the (non-existent) chance that you might have ALS? Some more "cases" where people suffered symptoms you don't have for a couple of years before being diagnosed with ALS? Tell us what you want.

Originally Posted by horevo

I understand that this is a quickly porgressive disease and I have read about the struggle of others on other boards other than this one. I have read both stories about symptoms progressing rapidly and stories of slow progression with little to no changeover a year or two.

So, the handful of slow progression cases that you've read about during nearly two years of searching are more important to you than the dozens, if not hundreds of cases where progression was normal -- that is, quick and relentless, as opposed to slow and stop-and-go. Why is that? I suspect it's because every day that passes without either disability or progression for you shows just how silly and foolish you've been to have invested so much time and effort into clinging to this nonsensical idea that you have ALS.

Clinging to other people's misfortunes just so you don't have to admit to yourself and others that you've been wrong for two years -- how very sad to be in your shoes.

Originally Posted by horevo

I have the utmost respect for the PALS on this site and I pray for them and their families. I'm just scared and don't kno what paths to go down now.

Treat and learn to cope with the illnesses that you have been diagnosed with -- BFS and health anxiety. Any other path is a waste of time.

[horevo]

Trfogey,
You are very harsh in your post. I DO understand that you are frustrated with me and I DO understand that you don't want me on here scaring anyone and I am not trying to do that. I am simply looking for reassurance, like I stated in the beginning. I am not saying that I'm twitching and that's it. What I'm saying is that my tongue is weak and floppy and that I'm having difficulty with speaking and tongue fatigue and weakness that gets worse after I've talked for a short period of time. I'm not saying I have ALS... all I'm saying is that I'm undiagnosed and frustrated. And before you get on my case about my anxiety and people telling me on here that I do not have ALS, you should note that I know I have health anxiety problems and as my symptoms got worse so did my anxiety.... but I was away from the boards here for over a year. I am back now because something feels different with my tongue and because I am noticing more difficulties. I'm not here because I am twitching... I really don't even care about the twitching anymore to be honest with you. They are there... oh well, but I am concerned about the tongue issues and the weakness I feel in my tongue.. That's why I'm here. You are right, I don't understand your frustration. I don't know how you are feeling and I'm sure it sucks to have someone like me come on here and talk about what I'm feeling. Like I stated earlier, I'm just afraid because I don't know what is going on with my body.

[trfogey]

Your original post on this thread, horevo, in case you've forgotten how to use the Page Up button on the keyboard.

Originally Posted by horevo

Hi all,
I was on here about a year ago after I started twitching back in December of 09. You were all very helpful then in reassuring me that I probably do not have ALS and I was able to put it out of my mind and stop worrying about it until now. I am a 29 y/o female and I was pregnant and miscarried about 3 weeks ago. Since then, I noticed that my symptoms got worse, or sort of flared up. I am still having the all over muscle twitching, as it never stopped, and my right leg still feels weaker than the left. I found out I have IT band syndrome which could explain the pain and instability in my right leg. THe worst symptom, however is my speech. It seems like this has since gotten worse, but even more frustrating people can't notice. I have a lot of fatigue when I talk and I am having difficiculty saying certain words. My husband hasn't noticed anything different, nor has anyone else for that matter, but I notice and My tongue feels thin and floppy. I have bitten my tongue on occassion and I am having some difficulty moving the food around in my mouth. I have had all of these symptoms for about a year and a half and twitching for 2 years. I had 4 clean EMG's last year and I have all normal clinical exams with Neuros. I'm still really concerned that these are early symptoms and they haven't come out yet. Is it possible that I've had symptoms for about 2 years and that they still haven't come out yet for others to notice? I had another clinical exam with a neurologist today and it was completely normal. She didn't spend too much time with my oral muscles, she just aske me to stick my tongue out and looked at it at rest as well. She also said she doesn't hear anything abnormal about my speech... Does anyone have any suggestions or any advice? Does this sound like it could be early ALS? Would I have had more prominant symptoms by now?
Please help. I think you are all amazing people and I am grateful for all you do for others.

Note the parts that I bolded. These are the same symptoms you started with in January 2010 and they are the same now as when you reported them the first time. Go back and read your old posts. Then you'll at least be able to keep your stories straight.

So, yes, you are still talking about twitching and perceived weakness and all the other things that your doctors told you weren't ALS back in 2010. They are the only things about your symptoms that point in any way toward ALS and without them, there is not one speck of evidence that points to ALS or any other neuromuscular disease.

Even your tongue symptoms are a year old -- joelc advised you about them this time last year (the floppy tongue and the "perceived" difficulty pronouncing certain sounds).

You are not undiagnosed. You've been diagnosed with BFS, health anxiety, and IT band syndrome. All of these conditions can be treated to some degree and that's what you should do. At the worst, you may have to delay some things until you can develop a method to cope with what you do have without the more effective treatments. That would be the smart thing to do. Anything else would be putting the cart before the horse.

Good luck to you.

[horevo]

You are right, I do have a working diagnosis of BFS and IT band and anxiety. The main reason I'm back is that I have noticed changes in my tongue. It fatigues easily, it seems to have lost muscle tone, it is weaker than before, and I'm even noticing difficulty in swallowing. But again, you are correct, I do have those diagnoses and I have been working on them. I was on anxiety meds until I started with trying to conceive, I have been going to physical therapy for my IT band, and the BFS? Well, I've tried everything that my doctor has suggested, and nothing helped. So now I'm here with these speech symptoms that are really bothersome. My tongue is definitely worse than before and I guess I don't know what to do about it.
Thanks for listening.

[Ms. Pie]

You've gotten reassurance from your doctors and us that you do not have ALS. What else can we reassure you of?

My heart aches for you having a miscarriage. Get some help for your anxiety and broken heart. That could help your speach. The mind affected by heartache and stress can really mess with your body. I suspect this is your main issue now. Not ALS.

[Ms. Pie]

Let me add, if someone does post here fearful they might have ALS and that sounds like they may have ALS, we don't tell them we think they don't. We tell them to go to a knowledgable Neurologist and get tested. You've already done that and are having some weird symptoms and non-symptoms that all indicate no ALS. I truly hope you figure out what it really is and get something to alleviate your discomfort. Also, figure out how to alleviate your broken heart. Good professional counciling is my medicine of choice for that. Good luck. Try to enjoy your life. I am!

[horevo]

Ms. Pie
Thank you! You are right... all I can do is enjoy my life and put it behind me now. I need to figure out what is going on. I will work with my primary physician to look at my options. Thanks for all your help. Thanks to all of you for all your help. I appreciate it.
Good luck to all of you and I will keep you in my prayers. I hope they find a cure soon and I will do whatever part I can to help.

[Daphne]

Horevo,
I just want to lend you a little support because I know how you feel. I've had relentless symptoms for 2 years (twitches everywhere including my tongue, muscle cramps, muscular contortions, occasional weakness, slurring, etc.). Sure, it could all be in my head, but my doc takes it seriously nonetheless and has sent me for many tests (all clean) and we've tried many things with no effect, including therapy and xanex.
In August, I buried my older brother who died from ALS.
My father had some sort of neurological thing, maybe Parkinson's, maybe a stroke, but either way, he had neurological weakness, but he died young (55) before it was ever really diagnosed.
I am the spitting image of both of them and have the same personality, ergo, I certainly share many of their genetic predispositions.
I have walked in the darkness you feel. I walk in it often.
I block out my body's activities as much as I can, but then I get a cramp from the simplest of motions.
I exercise. I keep going. I focus on my many blessings. But still, I twitch and cramp, and my doc monitors me.
Yes, some people have years of symptoms. My brother suffered from painful cramps for 7 years. Related to his ALS? Maybe. Maybe not.
I have been diagnosed with BFS. Usually, I accept it.
Usually, I can remind myself that the statistic chances of my having ALS are tiny. Your chances are even smaller.
Usually, I surf the web and gain comfort in being able to say, "Yes, it sounds like I have BFS. No, I can't possibly have ALS." Look for websites that comfort you.
I have seen the disease before my very eyes. I sat near my brother's corpse for three hours before he was picked up by the mortician. I am terrified of this disease. I pray for everyone who has it. It will always be a shadow over my life.
But I go on. I relish life.
I take belly dancing lessons and ignore the cramps in my feet.
I push my big toe back into its proper position and keep going.
What's the point in stopping? I have four children who need me. I could die in a few years or live for fifty more. Nothing will stop this disease if I have it.
Nothing will stop this disease if you have it.
Live. Make babies. Keep going.

[horevo]

Hi Daphne,
Thank you for your post. I had tried to stay away from here for a while and found myself back here today just for the reassurance. I am so sorry to hear of your loss and how hard it must have been to watch your older brother go through that. Thank you for taking the time to write to me. your words are enouraging and I take them to heart. I am working on moving forward in my life. Some days are really bad and others I feel better, but either way, every day is a new day and I am trying to move forward from there. I am still working with my doctors as we are trying to figure out what is going on, but I'm pretty sure, as are they, it is not ALS. Whatever this is, it's somewhat debilitating and I dont' know that I will get any quick answers, but like my doctor told me the other day, I'm not going to put my life on hold. Thank you and everyone for all your kind words. I appreciate the reassurance and compassion you have shown me.

[horevo]

Hi Everyone,
So I'm looking for some input/advice as to what I should do as a next step. Since I posted the original message my speech problems have gotten worse. At first I would have the floppy, thin tongue feeling on and off and now its constant and I am having a lot of difficulty speaking. My voice is constantly strained and my speech is worse than ever. I have a lot of fatiguability in my muscles and when I do too much the muscles in my right leg get very tight at rest. This was actually one of the first symptoms I started with. Don't know what's going on, but I'm wondering if anyone has advice as to what the next step should be. I've seen different neuros and an endocrinologist, I have a rheumatology appointment in mid December. Anything I should be looking in to? Anything I'm missing?
Thanks for your help.

[jacobwilson8]

Stop worrying. & live your live in full mode. I know recently you had miscarriage, which might be hampering you. Who know this might be little psychological effect you are having due to miscarriage. Anyways, I was going to suggest rheumatologist, which you already considered. All the best. Let us know the final results.

[horevo]

Hi everyone,
I know I said I would stay away from this site for a while, but I'm really having some concerns about my symptoms. I started having some new and disturbing symptoms as of the past couple of days. I am noticing that it is hard to talk because my voice vibrates my soft palate and it makes it uncomfortable. I am also noticing that when I talk I get this snorting type of sound at the back of my throat. In addtion, my tongue has been very stiff. Almost like swollen but really feels more stiff than anything else. When I start to move it around more it becomes more relaxed and it feels more fuid. In addition, my right leg has also been really shakey when I walk lately. I am afraid to go see the AlS specialist tomorrow because I have these new symptoms and I am really worried about them. Any insight or advice?
Thanks

[olly]

horevo,you really need some medication for your anxiety.
if it was als your voice would not get worse in a matter of a few weeks and others would definatly notice.
i never notice my speech problems but my son has an annoying habit of pointing out when my speech is slurred or words come out jumbled,frankly i dont want to know and be reminded.
als like pls starts as limb or bulbar onset and initially the symptoms develop very slowly......you dont develop limb and bulbar problems at the same time with als/pls .
there are a few of you on this part of the forum right now who clearly have anxiety symptoms.

[horevo]

Hi Olly,
Yes I have anxiety and I am on medication for it as well. but these symptoms just seem to keep getting worse since they started 2 years ago and I'm really concerned. I know, anxiety can cause A LOT of symptoms. I definitely am aware of that. But I also feel that my symptoms didn't really subside when I was on anxiety meds either and then this all happened and I feel worse, not better. The tongue and throat symptoms are by far the most distressing. I just don't know what to do anymore.

[olly]

horevo,i really dont know what to suggest but i can honestly say that if nothing has shown up in tests after 2yrs of symptoms then its not als.