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jakela

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Learn about ALS
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I had a sore lower back for many months and then it seemed to spread up to my shoulders. During this time, physical therapists noticed my muscles were twitching by my lower back. I had a trip and a fall and noticed that dancing and jumping was a difficult for me. I was thinking, "wow, I am getting old fast". Another physical therapist told me that my leg strength seemed a bit weak.

So, now I recently went to a neurologist and he ran and EMG. He said I had no nerve degeneration and that my strength seemed decent. But, I have had constant fasciculations and twitching in my muscles for probably about 5 months now. I never really noticed them until about 2 months ago though. He noticed them strong on the EMG and said he was sort of confused why my nerves seemed healthy but there was such strong twitching and fasciculations. I told him they were also in my abdomen, but he sort of ignored that and said it is probably from coffee. Problem is, I have not had one caffeinated drink of any kind for over 6 months. I drink strictly water and fruitjuice. I asked him about the odds of this being ALS. He would not be clear because he did not want to be held to an answer. But, he did say there is a possibility. But also talked about general fasciculations. Perhaps benign? So I am left thinking, I either have this benign twitching thing, or a terminal illness. He prescribed anti seizure meds for the fasciculations. If I have limited time, it would be good to have some idea of that as soon as possible. I know I am not alone in all of these feelings and empathize in such a heartfelt way for all suffering through this. I have a followup in 4 weeks, but it seems like a long time to wait and I am left wondering the obvious question, "will I have to leave my family early, or do I have this thing called BFS syndrome"

Thanks in advance for any help.
 
Only a dr can answer your questions. Just hope for the best BFS is annoying but treatable. 4 weeks seems like a long time but the process of diagnosis can take months even years. There is not just one test. It is a process of elimination so patience is required.

My advice would be to live in the moment and enjoy family and friends, don't dwell and worry. It won't make the answers come any faster or change the out come. Worry and dwelling and anxiety is just a waste of time better spent. Start a journal of your problems, keep track of when they start, stop and where in your body they are, what you were doing and how long they last. this will give a time line for the dr and makes it easier to answer questions.

Good luck and keep us posted.
 
Thank you Vicki!

My life was really incredible. I was working in feature film on big Hollywood projects and very happy. Now I am stuck unemployed with these strange leg twitches and pain. I meditate regularly. Meditation helps for the anxiety a bit. I also pray. Other than that I am thinking about what I want to do to enjoy my time. It gets worse at night so I am really feeling the twitching now and need to go find a distraction like a good TV show or a phone call with family.
 
Your life is still incredible! No past tense there. If it is nice outside, go watch the sunset and listen to the bugs singing. Here I like to listen to the whipperwhill and the peepers( tiny tree frogs). I hear owls and coyotes. It is an orchestra of nature, very soothing. Sit down and start your journal. Relax.
 
I had a follow up neurology appointment. Despite my legs looking weak and having trouble holding objects (like a cup of coffee), the doctor said I do not have ALS. I am so confused because it is spreading all over my body progressively and it hurts, burns, and is making me very weak. I have intense fasiculations all over now. My EMG showed fasiculations, but he said they did not seem to show nerve damage. My left hand looks thinner than my right and I cannot use my left hand to do things like hold a cup or unscrew a lid. The fasiculations are in my face, tounge, legs, back, neck, abdomen. (Pretty much everywhere) Also, I noticed that my joints are cracking all of the time and I do not mean occasionally. All of my hand joints, foot joints, knees, neck, and hips crack continually with just normal movement. My neurologist said it is cramp fasiculation syndrome. Looking at my strangely skinny legs in the mirror, I am very worried that he might not be right. I am going to a neurologist that specializes in ALS for another opinion. The fear is overwhelming and I do not know how to live my life right now. The pain is so intense with pins and needles and burning in the muscles after even a little activity. I am on Triletpal which seems to help a little with fasiculations and pain, but it does not solve the issue. I can barely wait until my second opinion appointment and need to pray and meditate to make it through each day. If anyone has any insight it would be much appreciated. And thank you for your help vickim. It is impossible to explain to health people how terrifying this is. My family constantly wants to be positive because they love me so much. At 35 I am a bit younger and still very driven to take care of my family. This feels like a nightmare I cannot wake up from. If the new Neuro also says it is just benign then I will rest assured.
 
Try and relax until the next apt. The anxiety will increase the sensations you are experiencing. Be very happy that it is not als. The fasciculations can be lived with. It is annoying but not fatal. Be positive, look forward and be patient. I wish you peace.
 
I understand how scary the process is. It is indeed a nightmare. Please be reassured, that to the best of my knowledge, ALS does not present with pins & needles and/or burning sensations or cracking joints. Your EMG does not indicate ALS either. Most PALS I know were disgnosed immediately following the EMG. In my case I barely had my clothes back on following the EMG, when I was told I have ALS. I understand that test is pretty accurate.

I do hope the second opinion brings you good news on that front, however you also do need to to be re-assessed to figure out what is causing your discomfort. Try to distract yourself in the meantime, or you will drive yourself bonkers and feel even worse.

Breathe deeply.
 
Vickim,

Thank you for the positive support. Yes, I do need to relax. I am going to meditate and pray tonight. In that past, I used to exercise ambitiously or drink when I was too upset about life. I quit drinking to live a better life and now I do not like to exercise as it makes the pain worse.

Ottawa Girl,

That is very reassuring. The EMG was about 5 weeks ago now. The fasiculations were present but no nerve damage. Regardless of what is going on with myself, my heart goes out so sincerely to all suffering this. It is very strong of you to continue helping others.
Thank you!
 
I talked with the nurse from the ALS clinic yesterday. Fortunately, I have an appointment with a prominent ALS specialist in one month now. She said that ALS does not typically present with so much pain. I have severe pins and needles burning pain when I use my muscles at all. This is similar to what I have heard on this thread.

Yesterday, I was finding holing a piece of paper between my left thumb and index finger difficult enough that my arm started shaking. Likewise, it was difficult to push down the clutch on my manual transmission car with my left foot. Waking up and looking in the mirror this morning I noticed that the area of muscle just above my left knee looks very thin resulting in the knee revealing the bones underneath very clearly. I have had a difficult life by most standards, but I have never faced anything like this.

It does take self control to not worry about this and try and enjoy my days. I have been looking for natural methods of stress and anxiety relief. Previously, I would literally bike 30 miles if I was stressed out like this. Or, I would run five miles. I am so weak now and my muscles hurt with such little use, that I cannot really turn to exercise for stress relief. Does anyone have suggestions for natural anti anxiety. Such as, meditation, supplements, aromatherapy, music, or spiritual practices?
 
I'm also in the process of getting a diagnosis. And just like you, I am young (37) and a runner and active person. I can't run or exercise either because my foot drops and it scares me. And my hands are so darn weak I can't support my weight. I miss exercise terribly, especially for the mood enhancement.

I've been reading or watching downton abbey. Sounds silly but it takes me away from reality for a while. Not the same as exercise, but it's something!
 
I would try any or all of those things for relaxation. Deep breathing helps too. Reading is another relaxing thing to do.

I love Downton Abbey. Music is very relaxing. Light a few candles, turn the lights down and the computer off and turn on some soothing music. Close your eyes and imagine floating. There are a lot of things you can do to relax.
 
Downton Abbey is a good show. I did watch that for a long time. Another thing that relaxes me is telling my three year old son stories. My job was creative so I can easily spin an hour long fairytale from my imagination. He sits in amazement as the world I am describing takes shape. Often the stories are about the two of us going on adventures that are not possible due to my physical condition. We are typically on an expedition or some other adventure. He was fascinated with my beard so I have been praying to God that one day we will both have beards together. As my left hand becomes weaker, I have trouble picking up lightweight objects like a glass of water. Actually, I can pick it up easily now, but my hand gets shaky fast. It is as though I have no muscle endurance. The energy is there to pick things up and apply torque, but the burst of endurance is very short. Holding a cup for 10 seconds gets very tiresome. My life was very ambitious, I actually worked in Hollywood on major films as a artist. It is so difficult for me to slow to this new pace.

My Igenex Lyme test was positive, but many people claim that the test can yield false positives. And, my test was only slightly over the standard for positive, thus not too conclusive. A regimen of antibiotics has been prescribed. However, my hopefulness is lacking as I see what looks like holes where muscle previously resided in my left arm and left leg. I am on Trileptal now so I have less fasiculation intensity and less cramping burning pain. However, the pain intensity increases if I walk or become active.

JustTrying- I pray things improve for you and that the diagnosis is another benign issue. Being an active person by nature, we both understand how trying it is to not be able to turn to exercise as a stress therapy.

I have been looking at teas and other anti-anxiety remedies. I like the idea of just listening to music. Pandora piano music has been helping. Waking up every morning and seeing myself in the mirror is a terrifying experience as the muscles on my left side look much weaker than the right. I am trying to make the best of my days and my time. However, I feel like I am failing by living in all of this fear.
 
Why don't you turn all those stories you tell your son into children's books? It can be a creative outlet and stress reliever all in one. Don't look in a mirror unless you are dressed, just until you get yourself under control. I would take the antibiotics if it were me. It may help.

Being a Debbie downer is not going to help anything. Pity party and sad sack are ok but only for so long. It is time to put on the big boy pants and try to find some positive in something. It is hard and I don't mean to sound harsh but wallowing is not going to solve anything. It is a waste of time and it is time you can't get back. It won't change the out come, no matter what that may be good or bad. I am only saying these things because you have a beautiful family and you need to enjoy it. Your son is only little once and it is your choice how you choose to spend it. I wish you strength and peace.
 
Why don't you turn all those stories you tell your son into children's books? It can be a creative outlet and stress reliever all in one. Don't look in a mirror unless you are dressed, just until you get yourself under control. I would take the antibiotics if it were me. It may help.

Being a Debbie downer is not going to help anything. Pity party and sad sack are ok but only for so long. It is time to put on the big boy pants and try to find some positive in something. It is hard and I don't mean to sound harsh but wallowing is not going to solve anything. It is a waste of time and it is time you can't get back. It won't change the out come, no matter what that may be good or bad. I am only saying these things because you have a beautiful family and you need to enjoy it. Your son is only little once and it is your choice how you choose to spend it. I wish you strength and peace.
Vicki I needed to hear your words today!
 
I have actually written two children's books in the past. After reading this, I began to write another more complex book for older children. Spending time with my son is important to me. Today we are going to the playground with help. My left hand and left leg feel weak. This always brings me back to my issues, but I am fighting the pattern of being negative when I can. Trileptal seems to make me feel down or overly tranquil. But, it also is the only thing that slows my fasiculations and prevents some pain. As far as pain is concerned, I have heard it mentioned many times that it is not an early feature of ALS. But, I have also read to the contrary that it presents in 70% of cases. My pain was extreme early on and continues with any use of the muscles.
 
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