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SUNNY1414

Member
Joined
May 22, 2016
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22
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
MO
City
St Louis
Hello! I have been incredibly grateful for the wealth of information I have been able to obtain from this forum. I want to say THANK YOU to all who moderate and participate here.

I am a 43 yr old female that started with some buzzing and twitching back on February. I didn't think anything of it.

By April, it had become so pronounced that I made my first ever visit to an ER. They dismissed it and I decided to get a neurology appointment.

The only significant finding at that time was damage to my peroneal nerve which was thought to be due to some scoliosis.

I was elated and left being told it was benign fasciculation syndrome - although I did have highly elevated b6 levels.

Fast forward to three weeks ago when I started having terrible cramping in my right dominant hand. I had also been having some cramping in my lower front right leg where the peroneal nerve is. I had also had some ankle weakness in recent months on the same side.

It was when the cramping started that I noticed the atrophy of my right bicep which has always been my dominant arm. The right hand that is cramping also now has a smaller Palm muscle. I actually saw the first tiny fasciculations in that palm last night.

I am still able to grip but it is weakening and painful.

I tried lifting a weight yesterday and cannot lift without struggling. Today I am sore on the right side where all the cramping has been as a result of trying to lift a simple dumbbell.

I have an appointment with the neuro Tuesday to have a new NCV and myelogram.

I am actually eerily calm as I have already gone through enormous anxiety to this point. I am sure I am in a pre shock phase. I have the greatest husband I could have ever asked for and two sweet 6 year old twin girls.

I sat down with my husband this morning who has been so over the top positive and in denial. I asked him to accept that this may very well be ALS and he fell apart and cried for two hours.

He is much older than I am and probably scared beyond recognition of how he will raise our girls without me if it is what it seems.

I have resolved myself to stay strong for my family. I want to show my girls how to face life in all its ups and downs. It isn't going to be easy if I start to lose functions to maintain my motherhood and that, above all, scares me. I don't know how to teach my girls to accept this. I feel like life has just been put on Mach three overdrive to get it all in if we face this terrible diagnosis.

On a side note, I had a non contrast MRI which came back negative for MS.

I welcome any support or feedback you can give and deeply appreciate anyone's valuable time who posts in reply.

Blessings and peace.
 
Doesn't sound like ALS onset to me. You sat your husband down and self-diagnosed a terminal illness to him???

Go get your tests, then please let us know the results. Until then we can't really comment much as you need a neurologist to dx clinical weakness (you describe perceived weakness) and an EMG only if the neurologist feels it is needed.

We have a sticky post that says READ BEFORE POSTING - please go read that.
 
I moved this because unless I missed something the only person who has diagnosed you with ALS is you.

ElevatedB6 can cause some serious issues and there are many tests that need to done still. Please back up a little bit and approach your neurology appointment with an open mind.

Good luck and let us know the findings of your clinical exam and your tests
 
I would look into the elevated B6. It can cause some very strange neuro symptoms. Make sure you tell the neuro about this.

What you have described doesn't sound like ALS to me.
 
God bless all of you for the replies. I am not self diagnosing, but trying to be prepared for what seems highly likely. The biggest shift for me was the atrophy and cramping. My husband even noticed the atrophy in bicep and hand.

I saw the worm like movement in the palm of my cramping hand last night - it was not like other twitching I have had. It was a set of tiny movements in my palm muscle.

I brought the B6 up with the neuro who dismissed it. I thought it may be significant. However, it would not explain the obvious atrophy on my dominant side.

I understand about moving the post and will definitely respond with the results on Tuesday.

I realize we may have to go through quite a battery still, but I can't imagine what else would cause atrophy, cramping, twitches and weakness. I know how strong I used to be and I am definitely weaker.

Thank you again for any feedback or input you have. Any questions I should be asking or possibilities of what else it could be? I have no known hereditary issues and do not have any of the symptoms of GBS, Charcot Marie Tooth or SFN.

Again any input for my appointment would be appreciated.
 
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You should address all further questions to your doctor. Make a list of your concerns and ask follow-up questions.
 
SUNNY, this is the most important statement you made: "I can't imagine what else would cause atrophy, cramping, twitches and weakness."

You're absolutely right. You have no way of imagining the other possibilities because you're not a doctor.

Recommend you back up a little, wait for the doctor's dx. For what it's worth, I see no reason to think of ALS.
 
Thank you, Mike, and to all those who took time to reply. You are absolutely right. I am jumping to the most serious of all conclusions without any professional support. The work you are doing on here is deeply appreciated. The work you are doing in your personal lives is beyond words. God bless you.
 
I just want to update you that I returned to my neurologist today who has referred me to an ALS specialist just to be sure based on the new cramping I am having.

I would really appreciate feedback about cramping with ALS. I had already shared I am having cramping in my hand and the cramp in the front of my right leg (all on same side) has gotten worse. I have been having twitches for a few months.

I will be seeing a specialist in two weeks and pray for some of this to improve before then. Right now it is steady or slightly worse.

My concern is the number of cases I have read on here that started with cramping and twitching without weakness. Would anyone be willing to provide feedback about this? It seems there are quite a few posts where people had these symptoms, but didn't have weakness for a long time and then were diagnosed.

I really appreciate your feedback. I mainly wonder if the specialist will be able to collect proper data if this an early stage. I would think being symptomatic with the cramps and twitching would mean data would be picked up if it is there?

Thank you so much for your time.
 
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I know how difficult this must be for you, but you need to let this go and stop diagnosing yourself. You will drive yourself and your love ones crazy.

I was falling and had problems walking before my family doctor sent me to Neurologists and other doctors. One of the falls was pretty bad, and that was last summer - I was not diagnosed with ALS until last month. The doctors need to do many tests to rule out other problems/illnesses before they will say you have ALS.

None of the Neurologist (3 of them) diagnosed me with anything but stress and drop foot with a pinched nerve behind my knee. I, on my own, got help for stress, and we determined that my stress was because I was not diagnosed and I did not understand why I kept getting worse each month. Justifiable stress.

I had two years of falling, frozen fingers, twitching, drop foot in my right foot and starting in the other foot, dropping things, and not being able to button anything, open can goods, and so much more, I was sent as an emergency patient to UCSF Medical Center.

Since ALS is so rare and usually men are diagnosed, per what I read, ALS was the last thing I expected to be diagnosed with. I did know something horrible was going on, but I kept waiting for each appointment I had to tell me what it was. In the meantime, my family and friends, watch a hard working, self-sufficient woman, turn into a woman who now needs help with everything. I kept working hard at getting better with exercise, but it did not help.

This is a disease you do not want, so keep thinking positive that it is something else. If you do have ALS, believe me you will eventually find out. I hope that is not the case for you, and wish all the best.

Hugs,
Deb
 
I don't know of any PALS here that started with cramping and twitching but no weakness. Cramping and twitching alone mean nothing.

You can't see someone too early - ALS will show up on the EMG in areas that you didn't even know were being affected.

Please now just go live your life for two weeks, then believe the ALS specialist 'just to be sure'. That sounds like you talked the doctor into the referral.

You don't present with ALS symptoms, as what you have is vague and common to so many common things. All the best!
 
Deb and Tillie,

Thank you so much for taking the time to respond. Your time is immeasurably valuable and I sincerely realize that (probably not even fully) given what you are dealing with or have dealt with.

From Deb, I take needing to let go of this and stay positive. It is amazingly difficult once you realize how many go for so long before realizing the signs were there all along. It is something that three neurologists saw you and didn't realize. I am assuming you were having all of the difficulties with the falling and not being able to use your fingers whilst you had been seeing those neurologists. I want you to know how I will take to heart what you have said about staying positive. I really do need to be meditating on the best possible outcome, because I have been scared. Thank you for your time.

From Tillie, thank you so much for the feedback on your experience regarding the cramping and twitching in the absence of weakness. I appreciate your input on the timing of the EMG. I will do my best to savor each of these days as a person should anyway - thanks for the reminder. I do hope that these common symptoms have some common solutions.

Sending good thoughts to you both and thank you again. May you have a peaceful night.
 
I'm a little confused. Your initial post in this thread said you had atrophy in your bicep and hand. If you had true atrophy you would have weakness, noticeable weakness. Yet you are asking if it's possible for ALS symptoms to be cramping and fascics without weakness?? I understand your fears and that you are looking for feedback, however you need to just refocus your thoughts and energy on things that are positive. Until you see a neuromuscular specialists and have the unbelievably numerous other tests to rule out mimics, you are only causing yourself to manifest symptoms you don't have.

My very best to you and a positive outcome.

Vince
 
Vince,

I am really thankful for your feedback and accountability. What I learned from the neuro today was that we did not have any baseline to compare my hand and bicep other than it currently lacks definition that it once had. She was not yet willing to point to true atrophy. (Thankfully).

She went on to say that even disuse of the muscle could be responsible for what I am seeing. I pointed out in my initial post that I could barely lift the level of weightbearing I had been able to, but was held accountable here for that (thankfully) as being perceived weakness. So, I have shifted gears in not including that in my current communication as I now see the difference being pointed out regarding clinical weakness and diagnosed atrophy.

I don't want to "own" something that has been disowned (and will gladly disown!) - I am genuinely having the cramping, fatigue and twitching and will refrain from using the words atrophy or weakness unless it is appropriate. Again, thank you for pointing that out. It makes me realize what I hope are the differences between diagnoses.

I want to also say a sincere thank you for your time and input. It is no small thing and is helping me to learn and understand as I go through the process of getting to the bottom of what is going on. I deeply appreciate the reminder to focus on the positive and to try to keep my thoughts elsewhere.... Not easy, but YES to you on that one.

Hope you have a peaceful night.
 
First of all, I just want to thank you for your time. I am waiting for my neuro visit next Tuesday and just want to run something by anyone who may be able to help.

I noticed something today that really frightened me. When I curl my pinky down on my right hand (happened while I was driving that I noticed this), my ring finger curls down with it and cannot be independently moved unless I hold my pinky down. I am very concerned as when this happened, it resembled the beginning of a claw hand. If I hold the pinky down into my palm, I can move the ring finger up a bit. This is on the same side where I have been having other problems. I do not have this issue on my left side where the fingers can move independently.

Please know that I deeply value your time - very, very deeply. I will definitely show this to the neuro, but would appreciate your feedback. Is this possibly the beginning of a clawing issue or loss of dexterity? I used to play the piano and have always had dexterous fingers and never remember this.

When the pinky is curled into the palm, that ring finger is completely frozen down - the middle digit tries to curl, too. I haven't noticed other issues yet with typing, etc.

I also noticed some cramping in my forearm yesterday and in my left leg. I am so concerned about all of this, of course. Thank you again.
 
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