Super Scared

[mtngirl]

Hi. I am posting because I am super scared that I have ALS. I started having weakness in my hands about four months ago. I wrote it off as nothing serious. However, in the past couple of weeks I have had increased weakness and it's spreading into my left arm and left leg. Also, I'm having tons of muscle twitching and my left cheek feels numb and weak when I smile. Went to my GP who recommended a neurologist. So, I'm going there on Thursday. Has anyone else had the same symptom?

Thanks...I'd appreciate any advise and god bless.

[carlogio]

Good luck with the neurologist. You're doing the right thing!

[mtngirl]

Thanks. Boy it sure is scary not knowing what is happening in your body isn't it? I appreciate the encouragement...I have two small children that need me to be around!

Good luck to you and thanks for the post!

[wright]

Hello mtngirl

Things that point away from ALS:

Weakness starting in both hands at the same time. Typically, ALS starts in one limb and then moves to the adjacent limb.

Moving from hand to forearm and leg at the same time. Again, typically ALS moves from one limb and then symptoms are felt in another limb. For it to progress into your forearm and leg at the same time, isn't typical.

Numbness in cheek is a sensory symptom, which again, isn't typical of ALS.

The twitching can be caused by a number of things, including stress and lack of sleep.

Relax and I'm sure your neurologist will get to the bottom of your condition.

Keep us posted.

[mtngirl]

Wright...thank you. You have helped me to calm down a bit. I lucked out and got into a neurologist day after tomorrow so should know more in a couple days. Thanks again for your thoughts and god bless you.

[mtngirl]

Hi...just wondering if anyone can comment on the following.

Went to the neuro last week and had an MRI and extensive bloodwork and 24 hour urine heavy metal test. All came back normal...which is good news I know. But my symptoms continue to get worse. I have major fatigue and weakness in my left arm and started in my right arm two days ago. I continue to have muscle twitching randomly and muscles feel weak in my legs off and on. I am 39 years old...female.

Anyway, I'm having an EMG next Wednesday.

Any thoughts on anything else this could be? I am trying to stay positive but I'm pretty scared.

Thanks to the great people on this site!

[PDaddy]

Let's hope it isn't ALS, cuz ALS sucks! I started a thread here a couple of months ago called "Not me too!" and it turned out that I do have ALS. The EMG can show MND, but the Drs will rule out ALS if they can. Again, think positively and pray it isn't ALS. Keep us posted!

[laurel]

Hi Mtngirl,

My husband had weakness and atrophy in his right hand, major fatigue, some fasciculations. EMG and nerve conduction studies showed weakness in all four limbs. He has been diagnosed with CIDP MADSAM variant and is treated with monthly IVIG and he is improving so far. Good luck. Oh forgot to say that CIDP is a disease that affects the peripheral nervous system, and we feel blessed that it was not ALS which was a differential diagnosis in the beginning.
Laurel

[mtngirl]

Thanks Laurel.

I can't believe how much worse I am feeling every day. Even typing this is causing intense fatigue in my arms. I just collapsed on the couch last night after a day of caring for my two young kids and fell asleep at 7:30. Not at all like me...I usually have tons of energy.

I'm a weak and twitchy mess! Have a neuro appt. Wed. and will let you all know. Thanks so much for the support.

I've been having diarrhea too...does anyone know of any connection?

Wishing you all a good day!

[CindyM]

Ther might not be a conection but if you have a bug of some sort it will make your symptoms worse, I would imagine. Good luck at the neuro's tomorrow!

[mtngirl]

Hello...I had my EMG and Nerve Conductivity testing today and both were normal. EMG picked up one fasiculation which she called "beneign". Anyway, this is a huge relief! But I am still having weakness in my arms and hands to the point where it's hard to type right now. Neuro was at a loss for what is causing my weakness and now my hands and arms are cramping as well. She told me to keep her posted if I worsen but because my bloodwork and all other tests were clean she didn't have any diagnosis. She said she has worked with hundreds of ALS patients and that it doesn't usually present in both arms so close together...started in left a month ago and in the right a week ago.

Just wondering...how confident should I be with this assessment? Should I seek another opinion? Any thoughts?

Thanks to the super people helping on this site and thanks for the good wishes.

Mtngirl

[wandabates]

:cry:Hi. I am posting because I am super scared that I have ALS. I started having weakness in my hands about four months ago. I wrote it off as nothing serious. However, in the past couple of weeks I have had increased weakness and it's spreading into my left arm and left leg. Also, I'm having tons of muscle twitching and my left cheek feels numb and weak when I smile. Went to my GP who recommended a neurologist. So, I'm going there on Thursday. Has anyone else had the same symptom?

Thanks...I'd appreciate any advise and god bless.

i have been going to my neurologist for over 7 months now and he just did my second emg nerve velocity test and mine came back alot worse then the first time.i have had swallowing difficulty,chewing is really hard,now tongue weakness,absent gag reflex,twitches under my skin,spasms mostly on my left side,and my neuro said today he was almost positive i have a motor neuron disorder now .he is sending me to the cleveland clinic to a specialist he knows that deals with these all the time.you do need to keep on writing your symptoms down,because dr's seem to not like diagnosing this disease .i felt all the dr's i had been going to thought i was crazy or making this up,it scares me to death but at least after 3 years of dealing with this i know what the problem is now..good luck ...wanda

[mtngirl]

Thanks Wanda. I am so sorry to hear about your diagnosis. Like you said, now you know what you are dealing with.

This has been the most frustrating thing I have ever dealt with. I know my body and I know something is very wrong. When my EMG was normal all my family and friends were so relieved to know that I don't have MND. Neuro said she was sure that I don't have MND. But, I am weaker every day and the twitching is making me crazy. So, how could I have all the symptoms but not have it. Neuro couldn't offer me any other explanation for my dibilatating symptoms as all of my bloodwork, etc. was normal. Now I think my husband and family think it's all in my head. I have never been a hypochondriac...quite the opposite.

Anyway, I'm going to the University of Colorado Neurological to get a second opinion. I need to know what's wrong with me...I have two young children. Thanks for the advise of writing everything down...I will do that.

Thanks for listening. Step out in the sunshine today.

Tracy

[crystalkk]

tracy,

I totally understand how you feel, I am going through the same thing. Everything coming back normal and continuing to decline
Do you have any atrophy? I have atrophy in my hands, forearms, feet and ankles with emg still coming back normal.
I have 2 young children also. It is very difficult watching your life totally change with no answers.

[mtngirl]

Crystal,

The worst of my symptoms is in my left arm and it is smaller than the right. But I am right-handed which accounts for some of that? Also my arms have always been twiggy so it's hard for me to tell. Mostly, my symptoms are weakness, cramping, and twitches.

Thanks for posting to me...it's nice to know I'm not alone in limbo-land. It's so hard feeling so weak and bad but still trying to keep on the happy face for my beautiful kiddos (5 and 7). But, what else can I do...I can't seem to find answers. Just trying to appreciate each and every day like never before until some answer comes.

Please feel free to post to me anytime (not sure how all that works on here...PM?). Sounds like we're in similar shoes.

Take care of yourself and best of luck.

Tracy

[jattd]

:confused:I know how you are all feeling I also have 2 small kids and can barely get through the day between the pain and twitching not to mention the fear. I am so scared im going to leave my kids without a mother. my body twitches everywhere and i have so much pain in my arms and legs. I feel like knowone beleives me. I don't want to live this way anymore. I want to be able to enjoy life and i cant

[mtngirl]

Hi Jattd.

Boy, there are a few of us out there in the same boat. Take comfort in knowing that you aren't alone and we will get to the bottom of this good or bad. I know what you mean about your thoughts about the kids...it's on my mind all of the time. I can't stop staring at them and marveling at them. I want to be there for them through everything and the thought of not...well I'm not going to go there.

I'm just trying to make the most of each day right now. Hug the kids a little longer, let them have ice cream for breakfast (haven't done this yet!), whatever makes things fun.

Take care of yourself.

Tracy

[jattd]

Omg! I am so scared I don't think I can go on another day. I cant live like this anymore. this is not living and if i do have this im dam well not going to let my family especially my babies whatch me die slowly. im sorry i have just had all i can take. i cant control these emotions. i cant be strong i cant pretend its ok i dont beleive it is.

[mamaoftwo]

Ladies - i can totally relate. Symptoms for almost 2yrs, declining slowly and still in limbo. My kids are 4 and 5yrs old. It is very scary. But ironically my anxiety was higher earlier on in this process and I learned that like a lot of others, with neuromuscular issues, you just have to wait and see. Sometimes it takes years to diagnose. Meantime, the hard part for those in limbo is knowing there is something terribly wrong, having a doc admit he knows there is something but not being able to pinpoint and meantime, your family around you behaving if all is well and it's just a virus or something that will go away on its own. It sure is an emotional rollercoaster.
I am right there with all of you. :(

[CindyM]

My younger daughter has a week old newborn and a broken leg herself. When little Daniel was born 3 weeks ago I felt strong, lifting him and bringing him to his mom. Then he got bigger, like infants do. Suddenly helping with the baby is an issue. These little reminders hit me every so often.

But I keep going back to what others around here say. None of us are guaranteed a life free of issues. We are not even guaranteed a long life.

I resolve to make the best of TODAY, it being the only thing I can be sure of.

[mtngirl]

Amen Cindy.

I am trying to live every day the best I can.

Interestingly, going through this, I have realized that a perfect day for me is getting up with the kids, making their lunches, seeing them off, caring for them, doing their laundry, cooking dinner...all those things that seem like chores when you feel good. Now, it's all I want to do.

Mamaoftwo, I hear you and this is one rollercoaster ride I want off of. When my EMG came back clean, my husband was like "great, it's nothing bad". So now, I he thinks it's life as usual again. But, I know my body and something is very wrong with it. I guess it's okay for him to not worry right now.

Cindy, sorry to hear about your daughter's leg...hope she heals quickly.

Anyway, I hope you all have a restful night and know that you're not alone!

Tracy

[Angie679]

Hi Mtngrl;

I have read your threads and just wanted to say I'm so happy that your emg tests came back fine. What a relief for you. I am also experiencing strange and scary symptoms. Historically though I have been a bit of a worrier (ok huge worrier) so I don't know what I'm dealing with really. I started over 9 months ago with random twitching here and there and now my right leg/foot feels achey in the upper calf area most all day long. My foot bothers me too. I limp around all day but can't say for sure I have weakness. I can do all the foot/leg excercises to check for strength/coordiation and don't seem to have any problems. I am going for my first emg test tomorrow and am so nervous. Was your test really uncomfortable? Also, did a neuro perform the test or was it a tech? I'm so scared about the whole thing and have put this off for months. I am 40 years old and have 2 small kids too. I would love if you could give me some insight on your experience with this test. Did you get the results right away? THanks and good luck to you!!

Angie679

[SJ71]

JTTD,

I hear you on your feelings. It is difficult for me to deal with this any longer as well. I need some help. Please God help me! I don't want to be this way.

[mtngirl]

Angie,

Sorry to hear about your symptoms...I'm scared about mine too.

My EMG was done by a neurologist in the office. Try not to be scared about the test because it isn't that painful and a small price to pay for reassurance. You have given birth twice and it doesn't even compare! Yes, there is some discomfort but I would liken it to muscle cramping. The neuro was telling me the results as she went so I didn't have to wait which was great.

Just a sidenote, from what I have learned about ALS from the wonderful people on this site, pain is not at all a first symptom. If you are primarily having pain and not weakness I think this is a really good sign. I know it's hard not to worry, especially when you have two little ones depending on you.

I hope you can get some rest tonight and that tomorrow brings you some reassurance. Please let us know how it goes.

All the best,

Tracy

[crystalkk]

angie,
good luck on your emg.....let us know how you make out.....
It's not that bad, as what people say.

[Angie679]

Dear Tracy & Crystal;

Thank you so much for your replies; I really appreciate your thoughtfulness and insight. I'm so scared!!! I was supposed to go today for my test but cancelled because I didn't have anyone to go with me. I have rescheduled it for next Monday (5/12) so I'll let you know. Thanks again for all your wonderful support.

Angie

[AndyB]

Hi Angie,

I was wondering how your test results came out last month?

Andy

[Angie679]

Thanks for asking; The doc. who performed the test said that the test result appears normal, however, she added that because my extremities were too cold (she had to keep stopping the test to warm up my legs/arms) the readings may not 100% accurate. Of course, I am questioning the reliability of the test at this point. On the one hand I was relieved to hear "normal", but on the other I am skeptical. She tested my right leg and right arm because I had complained of cramping/achiness in my calf muscles along with random body-wide twitching. Since my test however my left leg tends to be where the twitching is mostly present. I tend to run a little on the compulsive/neurotic side and have a lot of stress in my life, but I am trying to take one day at a time and work on my slow/deep breathing. I think it helps. All in all, I'm glad I finally got the test done and am trying to focus on the positive which according to my neuro, at present, not indicative of als. Take care
Angie

[CindyM]

Way to go, Angie! We can use a little good news around here every once and awhile!

[crystalkk]

angie,

I'm happy that you got good news, How does the dr know that your arms and legs were too cold.
Is there something indicating this while they are doing the test or do they just feel the coldness in your limbs. I have heard of other people having to get there limbs warmed up during the test also.
I have always asked for a blanket, because it is cold laying there in a hospital gown.

[vmd]

Angie:

Glad to hear of your good results!

[Angie679]

Thank you all for being so supportive; this forum is the best because of all the special and caring people who take the time to listen and offer their advice with genuine concern. I feel blessed to have come across such a wonderful resource.
Angie

[Angie679]

Crystal;

Just to answer your question regarding body temperature and EMG; the neuro who performed the test said that if the area being tested goes below a certain temperature then the leads do not pick up the muscle activity accurately. I don't know the technical explanation for this, and I didn't necessarily feel cold but I think because I was so nervous naturally my body temperature decreased. She needed to keep stopping and putting heating pads on my legs/hands. The test took close to 2 hours. I was getting really annoyed because she would stop and say you're temperature is too low again, put the warm pads on me then leave me alone in the room for 20+ minutes. I know it wasn't her fault, but they really should be equipped with heating blankets. They left me lying there shivering (nerves) with a johnnie on and nothing else. I'm not sure if this problem is common or not but it leaves you wondering how accurate the test really is; it's certainly sensitive.
Angie