2 years of symptoms and still scared

[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.

 

[Ms. Pie]

4 clean EMG? Wow! Lucky you! Don't know what is getting you but I wish you luck in finding out what it is. If you had ALS they'd see it.
Good luck!

 

[horevo]

Thanks Ms Pie.

I don't know what is going on either. Yeah, all 4 EMG's were within one year, nothing in over a year... but I can't shake this feeling and I wish I knew what was going on. So do you think that if I had 2 years of symptoms, something would show up on a clinical exam? Thanks for you herlp and reassurance. How are you doing? I will pray for you and others on this board and their families....

 

[Ms. Pie]

Yes, I do think it would show up. It would have shown up two years ago too. Thank you for the prayers!

 

[horevo]

Thanks Ms. Pie,
I am still really nervous. I feel like my tongue is weaker than it was before and nobody seems to hear my speech problems, but I know I'm over compensating. I can feel it. My body twitching has intensified in the past week or so as well. I have been having some trouble moving food around in my mouth as I noticed yesterday. My facial muscles are tiring lately as well. I was smiling today and then my face, right side only, started to quiver and move... I don't know whats going on. On a short exam the doctor today saw nothing abnormal. I feel like she wasn't very thorough though either. I know that neuromuscular disorders are not her specialty as she is a specialis in Parkinsons, but I would think she would notice something. She thinks I have some neuromuscular or autoimmune condition that I have, but that it won't get worse, it will just have flare ups and such but that it won't get worse since I seem the same to her as I did a year ago... but I dont' know. I feel like speaking is a greater chore now. Like I am having more difficulty and that my speech is less clear. I am afraid that these are symptoms of early onset bulbar ALS... with the all over muscle twitching.

 

[notme]

Dear, with 4 clean EMGs and a perfectly normal clinical examination by a neurologist, you have absolutely nothing to worry about. Period.

ALS would show up on the EMG MONTHS before it'd show any physical symptoms at ALL that you'd notice.

I'm sorry about your miscarriage---that can be traumatic.

Seriously--you don't have ALS. If you had Bulbar onset ALS--the doctor would have noticed something--as would those that are close to you. Twitching is NOT ALS. Two years of 'symptoms' of true ALS--your question is easy to answer...you'd be severely disabled by now.

This sounds like a major case of health anxiety--and I'd suggest seeing your general doc to have it treated.

 

[trfogey]

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.

People who have ALS don't have normal clinical exams and they don't have clean EMGs. Since you have both normal clinical exams and clean EMGs, there is no reason for you to worry about having ALS. The fact that you do continue worrying about ALS indicates that you have at least one problem with your mental or emotional faculties that you should consult a professional about, though.

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?

If you bothered to read any part of this board other than the "Do I Have ALS?" forum, you might realize how selfish, egocentric, and just plain ignorant you sound when you ask questions like this one. We've had people go from first symptoms to death in less than two years. We've had many members go from diagnosis with mild symptoms to profound disability in less than two years.

You've twitched for two years. If what you have had been ALS, you would have had about a 40 percent chance of being dead now. If what you have had been ALS and you had been fortunate enough to survive this long, you would have been profoundly crippled by now, with paralyzed limbs or complete inability to speak and eat by mouth. You don't have any of those problems. You should be counting your blessings, not your twitches and not the number of words you think you have trouble with.

Get this through that granite skull of yours -- ALS is a progressive degenerative disorder. It kills people. If you have no progression and no degeneration then you don't have ALS. When a doctor tells you that you have either of those two things, start worrying about ALS -- and not before then.

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.

Go see a psychiatrist. You have an absolutely morbid desire to be diagnosed with a serious disease that needs to be resolved. Maybe the psychiatrist can get to the bottom of it for you.

 

[horevo]

Dear notme,
Thank you for your kind words. I appreciate your time. Yes, I do have health anxiety, I am not denying that and I have worked on that. I have been off my anxiety meds for about 3 months now in order to start a family. I do not want to go back on my meds because we are looking to try again soon. The symptoms have gotten worse in the past year and I realize the EMG's were clean, but I am wondering if they were done too soon. I don't know. I'm probably dealing with something else, but I'm just worried about it.

Trfogey,
I understand your frustration. "If you bothered to read any part of this board other than the "Do I Have ALS?" forum, you might realize how selfish, egocentric, and just plain ignorant you sound when you ask questions like this one. We've had people go from first symptoms to death in less than two years. We've had many members go from diagnosis with mild symptoms to profound disability in less than two years.

You've twitched for two years. If what you have had been ALS, you would have had about a 40 percent chance of being dead now. If what you have had been ALS and you had been fortunate enough to survive this long, you would have been profoundly crippled by now, with paralyzed limbs or complete inability to speak and eat by mouth. You don't have any of those problems. You should be counting your blessings, not your twitches and not the number of words you think you have trouble with.

Get this through that granite skull of yours -- ALS is a progressive degenerative disorder. It kills people. If you have no progression and no degeneration then you don't have ALS. When a doctor tells you that you have either of those two things, start worrying about ALS -- and not before then. "

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. 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. 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.

 

[notme]

His point, hon, is that with clear EMGs you don't have ALS. It can't be done too soon. It shows the problems long before you'd notice any symptoms at all.

Relax--start that family you want--and don't get stuck on this "ALS" train. It leads nowhere good.

 

[Kathylund]

Hi Horevo, your symptems sound like I could of been writing your post myself, I too have the symptoms where I feel like its hard to get my words out and also. My husband or no one around me notices anything. I have been to 2 neuros, 2 Al's specialists and all of them say no ALS. I also saw a speech therapist who did not notice anything. 3 clean emg in the last 3 month! Believe me I understand your anxiety, but I have to tell myself that these people are experts and it comes to a point where we have to believe them. It's been so long for you that you would of known by now. Feel free to pm me if you need to talk as I said I know how you feel. So sorry about your miscarriage. Kathy

 

[TedH5]

First and foremost I am sorry about your miscarriage. Obviously that is a very tramatic experience and I am certain can cause both physical and emotional hardships which I imagine could add to the symptoms you are experiencing.

The fact that you had 4 clean EMG's and several Neuro visits and everytime everything came out clean certainly makes it crystal clear that whatever is going on with you is not ALS.

If your symptoms are bothersome see a Dr and since you stated that you suffer from anxiety you may want to talk with your Dr and or therapist about that as well.

Good luck to you and please put ALS out of your mind!

 

[horevo]

Thanks TedH5,
I guess my concern is from reading stories of others on this board that had symptoms for years and then got a diagnosis. I guess I wonder how many had symptoms and clean EMG's, how many of them had symptoms only they noticed? I know that everyone's situation is different, but I feel like I don't know where to go from here. My docs don't know how to help me, and the nueros dont know what's going on either. I guess I feel like I can't get ALS out of my head because I've read of people with symptoms for 2+ year before getting diagnosed, and that is what scares me. I have read some of your posts on here and I think you are an amazing person. I am so grateful for people like you on this board that is fighting this terrible disease and still finds time to help someone like me. Thank you for your concern regarding my miscarriage. It was really hard to deal with as it was our first pregnancy and we were really excited about it. It is physically and emotionally traumatic, like you said, and that makes me wonder.... are my symptoms related to hormones in any way because they seemed to get worse after the miscarriage... twitching and speech.... I dont know. I am sitting here typing and my index finger is moving left and right and I am feeling my tongue is weak. ugh... you are right, I need to move forward and let the docs do the diagnosing, but I am afraid of what is going on, especially with those stories where people had symptoms for years.
Thanks again!

 

[Alyoop]

You stated in your post that you saw a neurologist yesterday. It's the neurologist who can answer your questions. You also said your exam was normal, so it's great that you do not have a neurological disorder, especially after all your EMGs and consultations.
You have just been through a traumatic miscarriage, and I am so very sorry. It's very likely to have stirred up your anxiety.
Get an appointment to see a psychologist who can help you see things in the correct perspective. It will save you a lot of emotional stress fixating on a disease you clearly do not have.

 

[susanf]

I'm sorry about your miscarraige. That in itself can cause unbelievable stress.
My mom had twitching and spasms for 32 years. All her emg's were clean. She died of stroke at 82.
I know your worried but be assured your ok. Clean emg's = no als.
Give your neuro a big hug and don't give als another thought

 

[Lobster]

Go to a speech language pathologist, ENT, and oral surgeon. You don't need another neurological exam.