I'm back again with symptoms.

[inamaum]

Hi, everyone.
I'm 31yr old female. I posted here few times before regarding some of my symtomps. I wasn't able to post after that. This time I had to come back with different name. I used to log in as hina.

I had body-wide subtle twitching, left arm and hand percieved weakness, right lower leg uncomfortness and weak feeling( kind of like off balance feeling). 4 months into my symtomps I had a clean EMG. My neuro told me it's all stress. One month later I had a slight pronounciation problem with my tongue and togue twitching and was referred to another neuro. Fortunately, while I'm waiting for my appointment with him, all my symtomps got better except subtle twitching here and there and limbs jerking occasionally. I even cancelled my appointment with my neuro. For almost a month I was enjoying my life again, apprecitating everything and not taking anything for granted.

But all of a sudden on August 2nd, I woke up with a heaviness in my right arm which I didn't have any problem before. since then my right arm is always heavy and gets tired easily. holding a hair dryer in my right arm is very different from holding it in my left arm. LIfting up my right arm three times above my head already feels the muscle burning. Also my concern is the old same problems are back with my left hand(weak feeling) and right leg again. I can walk, tip-toe, on heel but it tires quickly and feel off balance, heavy and feel like I have to drag it. I also experience shortness of breath and tend to stop breathing as I fall asleep at night too. So, went back to the neuro that I was going to see back in May. The strengh test, my reflexes were all normal and he said I look too normal to be there and real serious disease don't come and go like mine does. He said it's anxiety. He said it will be the same case with my breathing too.

I'm worried about this heaviness I'm feeling in my right arm. and other sympoms that came back. why do they come back when I'm all well and happy? I know you guys will say ALS don't come and go, but I keep on thinking that this is very slow progression and that's why it's mild and sometimes unnoticable by me although the actual symtopms are still there. I tried really hard to forget about all this after my clean EMG now it's all came back and i'm very scared again. My first EMG was 8months ago. TIme for another one I guess. My silly question to guys is, is this heaviness in my arm considered as beginning of weakness? it gets heavier and heavier until I can't lift it up any more? also it's been almost 2months since I woke up with heavy arm in the middle of the night, by now am I expected to have some noticable weakness? my twitchings are very subtle can't see them but happening mostly on my right side of my body.

sorry, you guys I'm here and humiliating myself. I wish I don't have to be here, but
I'm soooooo scared.. please if you possibly could, share your experiences with me, and possibly tell me it's nothing and heaviness in my arm, all this weak feeling are not associated with some serious muscle disorder.. sorry it's too long and thank you.

 

[inamaum]

no replies? anyone?
My emg was done by a local neuro(my headache doctor) 8months ago.(left arm and right leg only, in 10min.) According to what I've read here sometimes problem takes longer to be detected by EMG. so I'm worried again. Now I'm having new right arm symptom along with my old symptoms.. I know all my problems were gone for a month. I felt good and that's why you guys don't even bother to respond to this, but just forget about my old symtomps and I'm having this heaviness in my arm with sort of weird gait thing on top of this subtle twitching that started a year ago. Considering these two symtomps only, aren't I supposed to be a little worried? I definately have some neurological thing going on more than a year and I know you guys are suppotive?

 

[wright]

The symptoms that you describe that are now happening to you and were once happening to you some months ago, would be categorized as lower motor neuron symptoms. You were given an EMG during your symptoms and it was clean. Therefore, your symptoms were not due to any type of lower motor neuron dysfunction, just as your neuro told you. Furthermore, those symptoms went away, which obviously points away from any type of MND.

Now you have the same symptoms, one of which happened over night. Nothing about MND happens over night, and if the symptoms are basically the same as they were months ago, it's my opinion that they are not related in any way to MND. It seems pretty simple to see, which is probably why no one has responded to this thread . . . it is obvious to us that your entire story does not in any way point towards ALS.

Where you think you read that EMG's take time to detect symptoms is complete and utter non-sense. You either read it incorrectly or it was stated by someone completely incompetent. One other thing: Weakness with ALS is not a "feeling" of weakness, as you have. You don't feel a thing; you simply don't have the ability to do tasks you once could.

You ask, should you be worried? Yep . . . not about ALS but certainly about why you immediately think all of your symptoms are related to a disease that there is absolutely no evidence you have. Take care of those issues and that will be step one on your road to recovery. If you truly think something other than MND is happening to you, then go see your doc again and get evaluated.

 

[inamaum]

thanks for any kind of reply.
Yes, I would love to find out why my body's feeling this way for over a year now,and it doesn't have to be ALS.
I have learned to ignore some of these weakness that I am "feeling." and I do admit a lot of anxiety were involved.
My new concern is my right arm heaviness/fatigue which is new to me. No emg was done there. I can lift it up above my head
, pick up my 30lbs daughter but it's definately fatigued easily and HEAVY! compared to left arm. Why objects are heavier in my right hand/arm? Without holding anything, my arm's still heavy. It also has sort of this feelin like my arm went to sleep but hasn't fully awoken yet with less strenths. this feeling started since yesterday. I'm having problem with my right leg too, no real weakness, but it bothers me a lot. I wish I know how to describe it.

One more thing that concerns me is my breathing, I get short of breath when I lay down, tend to stop breathing as I fall asleep. It's been over a month. I let my family doc know I often wake up with some bad dream like I would go under water holding my breath and not being able to come out of it or cry over something so hard that I run out of breath. She assumes I stop breathing during my sleep and scheduled me for sleep study. I'm not overweight, don't drink, don't smoke. Could this be some temporaily problem?

Gee, it's getting longer again.
thanks for reading if anyone ever come by again and give me some encouraging advice.
I'm seeing my neuro next month and see what he's going to say and do about this.......

 

[NotALS!]

You may have lyme disease. It also sounds like sleep apnea, do you snore? I used to have it and I would stop breathing at night. I would have horrible nightmares that I was drowning or dying and wake up with a killer headache.

I'm treating the lyme disease with an iv drug called ceftriaxone, which is helping alot. I have also been diagnosed with ALS, my arms have been progressively getting weaker and atrophying over the past few years. Now my neck is very weak and I have trouble holding up my head.

One thing to remember, if you have had lyme disease for a long time the CDC test won't pick it up. Your md will probably do the standard test and it will come back negative. You need to use Ingenx Lab in CA, it is a specialty lab for tick bourne diseases. My lyme doctor doesn't wait until any test comes back positive. He starts antibiotics right away based on symptoms. It has helped me tremendously with my lyme symtoms.

 

[inamaum]

Thanks, NotALS!
btw, what makes you think that i may have lyme disease? Does that mean my symptoms sound a lot
like ALS too? since their symptoms are very much alike^^*? No, I haven't been tested for lyme
but did a lot of other blood work. No MG, MS, no thyroid problem here. NCV was normal too.
I don't remember getting bitten by any kind of bug before all this happens and I was no where near the woods area.
Do you mind telling me how your arm weakness started? My arm is my main concern. I like to hope all other symptoms
will go away again like it did for a month. but with this arm, already avoiding using it although I can do just about
everything with it so far. Ever since I woke up with this heavy arm, it still remains that way. and feels heavier for the last few days.
I did tho went to a beach the day before and threw some heavy stones and rocks into the water with my right arm. but this fatigue/
heaviness should be long gone by now. it's been almost two months. I don't understand.

I do believe I have sleep apnea, but short of breath happens during the day too(come and go but not very often.) NO, I don't snore according to my husband. I really hope this is all anxiety and depression as I do get depressed sometimes. but never heard of having
heavy/fatigued arm/leg as a symptom of depression. very appreciate all the replies. My heart goes out to you all.

 

[TedH5]

inamaoum,

I want to say that I always try to be empathatic with people who do not have diagnosis and are scared of what is going on from a health stand point. I also want to give you advice. When I was going through my diagnosis and would google symptoms ALS would come up. However I never thought I had ALS or even thought it was a possibility until my Neuro brought it up as the most likely cause. I do not know what you have and in no way am qualified to pretend to be able to give you a diagnosis. It is easy to let "what if" consume you. That being said whatever issues you have a Dr will have to tell you. Your symtoms can be so many things and even the best Dr in the world can not diagnose you over the internet. So please try and stay calm and let your Dr give you a proper medical diagnosis. You are always welcome here for moral support and advice. Just rein in your imagination and fears. Live your life and what will be will be, but only a Dr can answer the questions you have.
Stay strong and keep the faith. Please keep us up to date and know you will receive moral support. Best of luck - Ted

 

[Lavender Lady]

Give yourself a rest a stop worrying about something you cannot do anything about today. You will drive yourself crazy and everyone around you. Go see your regular doctor and see if they can help your anxiety and maybe get you in for a sleep study. You do not appear to be in pain and are still doing things you normally do. Enjoy life! All any of us have is today, no one is guaranteed tomorrow.

 

[Robynnblue]

You dont have Lyme Disease. Sorry had to butt in on that one before you start in on another disease thats even harder to test for, you dont have LYME.