Really really scared

[Womble55]

Hello all,

I'm a 38 year old female, terrified that I might have ALS. In about August of 2007, my left arm/shoulder began to feel odd - sorta painful and tingly. Sometimes, I have tingling in my hand, sometimes not. I had an MRI done of the shoulder, many x-rays, all normal. Started physical therapy, which has gone well and reduced the pain to an extent, but it hasn't gone away. I did have an EMG on my left arm back in December and it was normal. The doctor ordered it because I was having odd tingling sensations sometimes that extended into my chest. Those have gone away with the physcial therapy. The EMG was normal as I said, but it was before the fasciculations started though. But then again it was several months after the pain in my arm started. They have said maybe cubital tunnel syndrome. Now, in the past few weeks, I have started to get twitches and fasciculations in my legs, plus some in my torso, shoulders, and arms. Mostly in my legs. They have been sporadic and varied locations, and mostly last for 2-3 seconds. Then, today I got one just above my left knee. It has been there for about 6 hours, on and off, not ever going away completely.

I'm scared because this bad fasciculation is on the same side as my bad arm.

I saw my doctor earlier this week because of my continued fasciculations (not the one today) and he said he really didn't suspect ALS. He did make me walk on my toes and heels, I do not have foot drop. He also checked out my muscles by making me resist him pulling on my arms, etc. He said that all my muscles were equal on both sides and there was no weakness that he could detect. I do not feel that I have weakness that I can detect, and I don't think I have any atrophy - I assume I would know if I did? I try to take the stairs two at a time and I don't feel weak in my legs. I type all day and have no trouble with that. I do not have any facial/speech symptoms. I do weights at physical therapy with the arms and no problems with that. My doctor also did a blood test for CK just to check and it was normal also (this week).

I'm still really scared with this fasciculation thing (I have read about the BFS but cannot convince myself that's all it is) and with the fact that my EMG was only on my arm and before fasciculations began. I can't seem to get past this fear.

Can anyone offer me words of wisdom? Does this sound like ALS?
CM

[wright]

Hello CM

The first clue that it isn't ALS is your sensory symptoms . . . that is . . . your pain and tingling. Fasics without weakness or atrophy (especially atrophy) isn't something that should concern you. I'm not sure how physically active you were prior to rehab, but a change in physical activity . . . an increase or decrease . . . can cause fasics. Furthermore, considering you have had pain for some time, I bet you have been on some medications, which can also cause fasics. Can I sit here and tell you with 100% certainty that you do not have ALS? No I can't . . . but if all you're presenting with are sensory symptoms (a good sign) and fasics . . . then I'd have to say you most likely don't have it. I'm pretty sure most everyone will agree. Now go relax.

[Womble55]

Thanks Wright. I am on prevacid (have been for over a year, I don't think that's related). I do get stressed easily, and I am in a fairly high stress job. I am a patent agent. I work full time plus I am in law school part time. This means I have very little time to relax! I am not on any other medications at all. I don't take anything for the arm pain because it isn't consistent enough. A few times I have taken ibuprofen.

So, to your point about being physically active...I'm not. This is primarily because I work 8 hours a day, plus school about 2-3 hours a day, plus homework. I sit most of the day at work, at school, and then doing homework at home. I am not particularly overweight - 5 foot 10 and 170 lbs, so could lose a bit, but not obese or anything. I would say I am not physically active but I am not a complete slug either. I take the dog for walks, I try to run up and down the stairs (checking for that telltale weakness!) and I do my exercises for my arm regularly. I do also wear high heels a lot for work, like client meetings etc., which is a good calf workout. No muscle weakness or difficulty walking in heels that I notice.

I thought the tingling was a symptom of ALS though, especially in the hands, which is where I get it with the left arm, and occasionally tingling in the left foot too.

I am trying, really hard, to relax.

[wright]

As I said, there are no sensory symptoms with ALS. When you read that pain is a symptom, it might be, but that is due to muscle cramps in involved limbs, or spacity, or joint pain due to inactivity, etc. Symptoms such as neuropathic pain or tingling just aren't in the etiology. Where did you hear that tingling is a sign of ALS? This might be a later sign with muscle atrophy and sensory nerves being irritated but not an initial sign.

Something else you might want to know: fasics are created or made worse by stress and lack of sleep. I bet you fit that profile. As I said: I really don't think you have ALS. If you still have concerns and for your peace of mind, ask your neuro to do another EMG. I bet it's gonna be clean once again. But, I also bet he/she will suggest it isn't necessary. I said it once and I'll say it again: go relax!

[Womble55]

My fascics are not getting better and I have started to get foot cramps at night. I tried to put on a pair of calf-length boots today and I noticed they are looser than they used to be. Either this is because of atrophy of my calf (I can't tell) or because I've lost almost 14 pounds in the last 3 weeks because of my fears, since I have no appetite. I'm not sure which. The fascics seem to be more in the legs now than anywhere else. They do seem to stop when the muscle is tensed though, which I hope is a good sign, but doesn't seem definitive from what I've read. I also think they seem slightly better in the mornings and slightly worse at night.

In any event, I have a leg EMG appointment for Monday morning. I am scared silly. My regular doc put me on buspar (anti-anxiety) to try to help with my stress/anxiety. I don't think it's working. He really doesn't think it's ALS but is having the EMG done to ease my mind. I keep doing calf raises and trying to determine if they feel weak. I can't tell. I can't really tell if any other muscles feel weak either. It's such a subjective determination.

[Jamiet]

CM,

Listen here, every little thing with your body will now be noticed in multiples of 100 by you. Your now focused on every little ding, twing spot and crick.

If it is ALS there is virtually nothing you can do, but wait it out, then, in the meantime, hope the lithium treatement in trials work.

What you need to realize, is that you can live with ALS. I have had this horrible symptom set for over two years now. I was supposed to die like a year and a half ago. I'm still here, i'm still walking. I still have horrible symptoms.

What i did is start living, quit worrying about dying. Were all dying, it's just a question of when.

Please try to relax, find you a good neuro and not focus on ALS.

Pls ask anything you need, we are here for you.

Thx,

Jamie

[wright]

Hello again Womble

The cramps you're getting are probably due to your poor nutrition and lack of sleep (calves are notorious for cramps). The loss of 14 pounds would certainly cause your limbs to shrink, so that is most likely the cause of your boots not fitting you as snug. Once again, looking at your symptoms: they just don't add-up to ALS. It really shouldn't be a concern of yours.
Some added notes: the MRI they did should have been done on your cervical spine and not your shoulder. The problem in your arm is most likely from a cervical root. This could have been picked-up by doing the EMG on your paraspinus muscles. I'm very surprised they didn't. The EMG you're going to get should also be done on your original arm and both legs and paraspinus muscles . . . not just one leg. Call them and ask them if they will do that for you . . . for your peace of mind . . . and again . . . I stress . . . for your peace of mind . . . not because you have ALS.
Once again: go relax . . . get some sleep . . . and eat. :-D

[happy]

Jamie,

Good Job! I am impressed with your positive outlook. You are so right even if you do have ALS there is nothing you can do but live each day and do your best. I am thankful I came across your post...have a great day

[Womble55]

Thanks JamieT for your words. I suppose I just keep viewing it as "life is over" instead of seeing it as something to keep living through. I will try to focus on that positivity. It is hard for me - I'm not a very optimistic person in general, really. I always expect the worst so that I can be pleasantly surprised if it's not as bad as I think.

Wright - the EMG is scheduled to be for both legs - I will ask about the paraspinus muscles. I am not having the problems in my arm so much any more. The many weeks of physical therapy have really paid off, and now the primary problem is the leg fascics. the arm only bugs me maybe once a week, and only mildly - usually when I've been typing all day. The PT did a lot of work on those muscles in my upper arm and shoulder and we did a lot of electrotherapy (STIM machine stuff) and ultrasound, and strengthening exercises. I actually "graduated" from PT last week and he said I didn't need to come back unless it got bad again. I am thankful for that. The cramps are in my feet - instep and toes, not calves. I am just worried about calf size. Today, it feels like my tongue is slightly swollen on one side. Yesterday, it felt like my nose was partly numb on that same side. Like Jamie said, these little things get so magnified when one is scared. I don't seem to have the hope in me any more to say that it might not be ALS.

[wright]

Cramps in your feet are also very common.
Your tongue being swollen is probably something that has always been there, but now, as Jamiet said . . . everything is magnified 100 fold.
The tingling on the nose is another good sign you don't have ALS.
As I said before: the smaller calves are due to you losing weight (it's as simple as that). If they are both smaller, then that's another good sign, because ALS typically occurs in one limb and then moves on to the other limb.
The fasics came about at the same time you had problems with your arm. Seems like a pretty big coincidence that they aren't somehow related . . . that is . . . stress from your arm condition leading to the fasics. I bet they will get better once the EMG is done and shows it doesn't indicate ALS. Have the doc do your arm too by the way, along with the paraspinus muscles. It would be more thorough and will take a little longer, but it's for your peace of mind.

[Womble55]

Thanks Wright - your point about it most often starting in one leg is an interesting point. My fascics have been in both legs with about equal frequency, also ankles, buttock muscles, both sides, and I don't see any difference between calf (or thigh) muscles. I have been measuring thigh muscle (partway up leg) for 2 weeks and no change in the circumference of thighs has been noted on either side. Maybe that is a good thing. I think the fascics really started right after I noticed a sort of reddish spot towards the base of my spine about 3 or 4 vertebrae up, and I had tailbone area pain for a few days, and the reddish spot was almost like a bruise, but it faded. I thought initially the fascics were related to having done something to my back, although I wasn't aware of having done anything to my back. That was about 5 weeks ago. The arm thing started back in August of last year, but as I say, is much improved.

[wright]

Fasics can occur for many, many, many reasons. I really don't think you have a need for concern. Now can I tell you with 100% certainty you don't have it . . . of course I can't. But given your symptoms and history, it just doesn't fit. Surely you have to know that losing 14 pounds is going to cause your body (including your limbs) to shrink.
You started to think you had ALS because of your arm. You remedied that problem with PT. You don't remedy ALS. You then got more concerned with the fasics in your leg, which again, can be caused by sooooooooooooooo many things. If all you now have are leg fasics and smaller legs because you lost weight due to poor nutrition and lack of sleep . . . then I think you can resume eating and sleeping and relaxing.
If you would like to discuss this further, you can private message me or keep in contact here so I can shoot-down your worries. :-D

[hopingforcure]

Take the helpful and insightful advice given from Wright and Jamie, this thing can just take a hold and not let go. Sounds like you are surely not going to be dx. with als..Hoping

[jl73]

Some things that can cause muscle problems:
lack of potassium can cause lots of problems/twitching numbness, aches and pains
things that you can eat:
celery
potato (with skin)
tomato juice or paste
give up sugar foods for a while (depletes potassium as does too much salt)

try that (unless you are on a special diet), see if it helps.

also if you don't eat a lot of meat, or not at all, take b12 (the liquid kind is best)

[Womble55]

The good news is that the EMG was normal for both legs and they did 2 spots on my back which I think are the muscles Wright talked about. The doc was a little harsh though, and said that he didn't think my symptoms warranted the test, and that quite frankly he thought I had an anxiety disorder. Maybe I do. I do tend to worry excessively about medical stuff, and this has been a recurring theme with me. So, I am seeing a therapist for that to try to get to the bottom of why I worry obsessively about medical stuff.

I am still twitchy, but maybe it is anxiety and lack of exercise. I am going to try to exercise more and worry less. I will also watch my food intake and see if potassium plays a role, although I do take a multivitamin. I am really going to try to stop worrying about ALS and try to get on with life.

I think, as many have said, that I need to learn better how to relax. I sure wish I could. And I really do appreciate the support I found here in those who listened to my fears and tried to reassure me. You are a great group of people. Thank you to all.

[wright]

I'm glad to hear that your EMG was normal . . . not that I didn't already know it was going to be. I hope you can now relax and enjoy your life . . . and enjoy the fact you lost all of that weight. Go out and celebrate by buying some new clothes. :-P

[Womble55]

I think I will slowly be able to relax, although it would be easier if the twitches went away. For the meantime, I think I have to stop self-diagnosing via internet and stick to my gardening websites. Seems like when I start to read about symptoms, I suddenly have them. I guess there are a lot of us like that. Thanks again.

[Angie679]

Hi Womble55,

I have read your posts and although I can't offer much in the way of medical advice, I did want you to know that you are not alone. I have posted an almost identical post as yours. I am 40 Yr. old female with the same symptoms as yours. About 2 years ago, I also had strange sensations in my legs/hands, falling asleep, tingling feelings that would come and go, and now a couple of years after all of that, add widespread twitching that last for a few seconds then moves to different spots, like yours. It is so very frustrating. I went to a neuro. and explained my fears and he also suggested anxiety as being the cause. He wanted me to have the EMG just to rule it out and give me peace of mind, but I was too nervous & I canceled it. I am such a wimp. I wished I had the courage to go through with it like you, but I am such a nervous mess. My family is tired of hearing my worries and have turned away from me and I have been seeing a therapist for the last 6 months to try to find positive ways to deal with all my negative thinking. I can't say that has helped me much but I know how you feel. Worry can consume you and steal precious time. I am living proof though that your mind can really play along with your fears and create and worsen the very symptoms you fear. I have feared the worst for many years and it's such a vicious cycle. I can only offer you my support and encouragement. It makes sense to say that in all probability you do not have ALS given your lack of weakness, from all I have read and heard, but I wish I could really believe for myself these facts. Good luck to you & I'd love to keep in touch. By the way, how long have you been twitching thus far?
Angie

[Womble55]

Hi Angie,

I've only been twitching for about 6 weeks. I would have to say that my twitching now is probably slightly better than it was before, maybe slightly less frequent. I can't imagine having it for 2 years. For me, it is better to know things one way or another. I could not handle the fear of not knowing what was wrong if I were you. For me, I have to be able to plan for things, to make good choices in life, to plan for family matters if something were to happen to me. I guess it is a "control" issue but I like to know what is happening and be able to act accordingly. So for me, cancelling the EMG was not an option. It was essential to me to find out. Whatever the result, not going to the appointment would not have changed it. I would work with your therapist towards going to the appointment. Perhaps it will put your mind at rest, but if the test turned out badly (which I doubt it would after 2 years), perhaps you will be able to make choices about your future and your family's future with all the facts in hand. I'd rather have more time, than less time, to make such decisions. If you have had all this for 2 years, it sounds very doubtful to me that you have ALS because I think you would have had a more serious decline by now, but I am not a medical expert and have no basis for that other than what I have read.

I feel better that I went for the appointment. Don't get me wrong, I'm still worried about what is wrong with me, but I am doing what I can to figure it out. I have a follow up medical appointment late this month and if nothing is improving, I will see what other tests can be offered to try to see what this is. I was about to delete the bookmark to this group simply because I think it's dangerous for me to read all the posts and get myself back into worrying about something that I've been told is not the problem. I wonder if that is part of your issue as well. When I surround myself by lists of symptoms and posts from people with similar fears and symptoms, they just play on my own fears and make them worse. You know, with my arm pain/tingling that started, I decided it was bone cancer and got really scared. I went for tests/xrays/MRI and it wasn't. So then I decided it was lymphoma and got really scared from reading all these websites and personal accounts of lymphoma, and I went for more tests and such, and it wasn't that. Just like a couple of years ago when I had a bad pain in my side for about 2 years, and decided for myself, over time, that it was colon cancer, ovarian cancer, intestinal cancer, etc. I went for colonoscopies, gastroscopies, ultrasound testing, etc, etc. I had myself completely wound up over it. You know what...it went away eventually. Last year I had a weird feeling in my throat and I decided it was throat cancer. I went to an ENT and it wasn't, so I decided it was a gland cancer pressing on my throat. I went for more tests. It wasn't. Turned out to be stress related - neck muscle issues.

So, all in all, I do think you should get the EMG, for your peace of mind. But I think that you and I are very similar in that we are deeply affected by reading about others symptoms and we tend to fear the worst all the time. It's probably anxiety and stress that started all this, and then we make it worse by doing things that make us more anxious and stressed. I hope you can get to a point where you can start to feel more comfortable. I sure am aiming for that myself.

[Angie679]

Hi Womble:

Thanks for your reply. I just wanted to clarify myself and my symptoms alittle because I don't think I was clear in typing them. My "tingling sensations" in my feet/hands happened about 2 years ago. I went to a neuro at that point because I was convinced I had MS. They did a MRI of my brain and ruled that out. Interestingly, my symptoms quickly went away. But like you, I was on to other things. I also had a wierd feeling in my throat, clearing my throat, and thought I had throat/esophageal cancer. I went to an ENT specialist and went through a whole myriad of tests; all came back normal. I then fixated on lower back achiness that I was experiencing and thought I also had colon or a female cancer. Again, all the tests/X-Rays; all fine. I went through a period of dizziness; thought it was brain cancer. So when this twitching started in July of 2007 I of course went on the computer and came up with ALS. It is a horrible thing when you spend almost your entire day worrying that you are going to die and leave 2 small children without a mom. What my therapist is trying to do is get me over this fear without going through all the tests all over again. She keeps trying to convince me that if I can overcome this then I will be able to do so if/when it happens again. Positive Cognitive Therapy. So far, it's not working. I leave her office feeling relaxed and calm but slowly the fear creaps back into my mind. I then start praying for peace and quiet but that only works for awhile too. You are right visiting this site and reading everyone's symptoms and comparing them to your own is probably counter productive, but it helps me to read about someone like yourself to know that I am not the only one in the world going through this tough time. I do wish you well and pray you will find peace in the days ahead. Thanks for your time. Be well

Angie