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varacara

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Hi everyone. I have been reading the posts for a few days, and have gotten the feeling that this group really cares about helping one another through difficult times. I was hoping maybe I could get some feedback to some of my symptoms. I am a 49 year old female and for the last 8 months or so I have been having speech difficulites (started out slurring, now it's harder to project the way I used to), and a definite weakening in my right hand (fingers) and lower forearm. It may sound silly, but I can't seem to snap my fingers anymore! Anyway, I've had a clean MRI, and two EMG"S, and thousand of $'s of bloodwork done. The first emg was normal, but the second one in October there were some abnormalities in my hand and arm. The neuro said she didn't think I had MS, and then I asked her about ALS, and she said "what makes you think you have ALS"? I can't stand not knowing, and even feeling that she wasn't being completely honest with me. I am, of course, terrified to "know", and understand that ignorance is not bliss! I think in the back of my mind, it is really ALS. Any advice would be greatly appreciated!
 

BethU

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Hi, Varacara ... is that the only answer your neuro gave you when you asked about ALS ? Some of these neuros must have had special training in insensitivity!

I would definitely get a second opinion. I have no medical knowledge at all, but from my own experience, I think a neuro needs to give you a clear explanation of what s/he thinks could be causing these symptoms. What are the possibilities s/he's considering? And what should be your next step in finding out what's wrong.

There are so many "mimic" diseases of ALS, it can be quite an ordeal to investigate them all, and it's stressful as all get out to go through the waiting period. Please ask any questions you have ... we have some experts on this forum ... and keep us posted.

Hang in there!
 

Al

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First of all, an inability to snap fingers is not normally a typical first symptom of ALS. After a couple of years I couldn't but other things had happened before. Neuro's don't usually want to mention ALS the same way cancer doc's don't want to say liver or pancreatic cancer. They say that and you know you're pretty well screwed. ALS is the same, they won't and shouldn't say unless they're pretty sure. Did they give you a time line to come back and be tested again? Quite often the neuro, if unsure will send a letter to your GP explaining their findings if they are inconclusive. Have you checked with them?

AL.
 

crystalkk

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I am right handed and for some strange reason I could never snap my right fingers, but I could snap my left.
 

varacara

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Thanks

Thanks for your feedback. She told me to come back 3 months for a repeat EMG-but I have decided to go to another neuro at the University medical center here that has a wonderful reputation for ALs and degenerative diseases. Just waiting for all my info to get to the new center so I can make the appointment. After the first emg they told me (and it was in their notes) that they couldn't rule out MS or ALS. After the second EMG that had some abnormalities, that's when she said she didn't think I had MS. With that info I then thought ALS. I know that ALS is very difficult to diagnose, but I felt like I wasn't being taken all that seriously and therefore not being told all the possible diseases they could be looking for. When I go to the new neuro I am going to take my husband or a good friend so the questions that I forget to ask will be asked. Thanks again for listening!
 

Boo Boo 621

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Hi all. I am interested in anyone's reply, but it seems AL is very knowledgable! :0)

I am 35-year old stay-at-home Mom that started having noticeable right calf muscle twitches almost a week ago. I had worked out really hard on my elliptical - which is very spaced out since I am busy with my 6 month old baby. Up until she was born I was a lot more active in running, walking and biking. I wasn't as worried about the twitching but made a neuro appt anyway for this week. Just this morning I realized my right calf muscle appears to be a tad smaller and not quite as defined as my left and I went into a frenzy. I am calmer now but am scared. I think there's slight atrophy. I have been more inactive than I have in a while but my left calf seems a bit bigger or more defined. And I get twitching when I sit and stretch my calf muscle by flexing my foot upward along with at rest, though it feels a bit fainter at times. Does this probably mean the beginning of ALS?
 

wright

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Varacara

Would you be able to get your hands on the EMG results so I can see them . . . and by results, I mean the raw data and not what the neuro's impressions were?

If you could, also tell us your progression of symptoms (weakness, atrophy, etc.) and when the EMG's were done in relation to your symptoms and any other tests.

Keep your spirits up because as of right now, you don't know what you have and it certainly can be explained by many things, things that are very treatable.

Take care
 

varacara

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Wright- I don't have last EMG results. I think after the last visit to the neuro I was too depressed and decided I wasn't going back. Just last week I called to have them sent, so when I receive them, I will definitely share.

My progression started with shortness of breath in March (which went away in a month or two), then some slurring of words and some twitching in my right leg (which has since gone away). All along my right hand was weaker than my left-I am a pilates instructor, so I saw the difference very clearly! Over the last few months my speech is sometimes okay, at other times mumbled and it's hard to project my voice. My right hand (especially fingers) has gotten weaker-can't open jars any more, tough to manipulate small items. I definitely have more saliva than I did before too. I have been going to acupuncture, a naturopath, and a speech therapist (who gave me exercises I can do at home to practice my sounds and projection). That's basically it - besides being a nervous wreck most of the time. Again, thanks!
 

Al

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Hi BooBoo. Fattery gets you everywhere here. LOL. Just from what you said in your post above I wonder why you think you might have ALS? You haven't had these symptoms long enough to even think you might have BFS. I'm not a doctor but Wright is as close to one on the site as we have and he'd probably agree with me that your Neuro will probably say no ALS. Let me know how you make out. Stay calm. Anxiety makes any twitching worse.

AL.
 

Boo Boo 621

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Hi AL, (and wright)

I will be the first to admit that I am not exactly someone who doesn't stay in tuned with their bodi when something changes or feels different. The thing is, I have far too much knowledge about various diseases and symptoms for this reason and when my calf started noticeably twitching (or if any muscle begins twitching for days) I get the most nervous knowing it is a symptom of ALS. I also know atrophy is another symptom and I definitely have a right calf (I am a righty) that has a smaller muscle than my left one and I wonder if that's been that way or is a result of ALS. Anything with my muscles, especially in my legs makes me nervous. Now that there is what I think is atrophy, I let my mind run rampant. I do not wish to be a pain, but I just woke up from one of the first restful sleeps I've had since several nights ago and had been sweating. This has definitely happened to me before, but not in a while. It threw me into another tizzy since I thought I read somewhere that night sweats is another symptom? I also continue to think it's a very bad sign that my twitching is NOT always physically noticeable and often I puy my hand on my calf to see if it is still occurring, and find to my surprise that it still is. I can feel it when I tense my muscle or stretch it and thought that meant the muscle was dying. So basically, it doesn't matter that I might not always feel it twitch unless I touch it? Or that it twitches when stretched or flexed sometimes? I don't think I'm actually manipulating the twitch. I'm sorry, I'm just so scared. I do go Tuesday to the doc, but this site has given me some positive feedback. Right now my husband understands I truly believe I'm sick, but I cannot wake him to talk about it right now. He works for UPS and it's their busy season! Plus I need to hold it together for my new baby.
 

brendapals

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hey boo,
Please tell me that the baby woke you up at 230am, had a diaper change and a feeding, and then you turned on the computer? lol

I'm not trying to sound overly mothery, but please, dear, for the sake of your own sanity, calm down, you have a new baby, a very busy hubby, so it is entirely possibly that since you have a new baby, you have the time to see twitches, etc.

Remember the old saying, sleep when the baby sleeps.
Just some more of that old woman advice for ya,
take good care,
brenda
 

rose

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varacara,

Its just so hard to get answers unless a person has a classic textbook presentation of whatever is wrong.

Plus, after a person gets to be past age 35 or so, how does one know what symptom is related to the main problem, and which symptoms are just middle age setting in, or something that has nothing to do with anything else?

With your background in pilates, you would know your body well, its the sorting out of what could or could not be part of another problem. I like the idea of you going to the neurologist at a university center that specializes in degenerative diseases. .... and yes, bring someone else along, even if just for support, and a second pair of ears.

Good luck, :)
 

varacara

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Rose-Thanks for your support. I am actually going to the new neuro at UCSD tomorrow so I'll keep you posted as to what he has to say. I'm taking my husband also!
 

varacara

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Not great news

Hi. Went to new neuro yesterday and he said based on my exam with him and my emg results from October, ALS is suspected. I am so angry that my last neuro didn't share her concerns or thoughts about the emg results-just told me there were some abnormalities and they didn't know! At this point, he wants me to go for a swallowing study in two weeks, followed by a lumbar puncture in early January. He said there are a few other diseases that this still could be: (did lots of bloodwork yesterday) some kind of cancer and some kind of neuropathy (sorry to sound so ignorant, but I kind of blanked out while he was talking!) but ALS was still likely. I am in shock. Where did t his come from? I know you have to go through stages of grieving, but this is so absolutley terrifying that's it's hard even to write about, let alone talk about. I want to be positive, but right now that seems impossibly hard.

How do you go forward? How do you explain to your children about this horrible disease? I have a 19 year old high-functioning autistic son, and a 16 year old daughter-should I be sharing this probable diagnosis before it's definitive? Any words of wisdom will be so greatly appreciated. Again, thanks for listening.
 

brendapals

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varacara,

Bless your heart.
Ok, now, you will be able to go forward. We will help out as much as possible on here!

Take a deep breath, in thru your nose, out thru your mouth...and remember, no two people with ALS are the same, nor do any two people with ALS grieve the same.

That being said, do what's best for you, life isn't practice, it's all we have, children are very, very understanding, I have learned. If they suspect something going on because of your speech or weakness, maybe you can let them know it's going to be a good holiday with them and you will have more tests in Jan? From my own personal experience, I found the 4 days after my diagnosed the toughest to handle when my hubby didn't want to tell our 3 boys, ages 18, 15, and 8.

When I finally broke the ice and told them, it was fine. We all cried, laughed, cried some more, laughed when I told them they didn't have to think I was drunk all the time, cried again, laughed when they told me I could be drunk and nobody would know the difference, and on and on...:wink:

Again, I want you to know you can lean on us for support, no one can decide what's best for your family, but you. Just know that you and your family are in my thoughts and prayers, and I personally will help you in anyway I can.

Mostly, I hope you enjoyed a laugh with my drunk story!:lol::lol:
 
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