Could it be anything other than ALS
Posted , 51 users are following.
Wondering if anyone has has similar issues and what it turned out to be?
started for me in March when I noticed to get muscle twitching all over my body arms, legs, feet, lips, buttocks etc. Some twitches were quite strong and would repeat 3 or 4 times rapidly then stop others were seen but not felt.
within a week one of my legs felt odd not sure how to describe it. Then the leg dealt weak but I still use it.
i went to the doctor who scheduled an EMG and NCS. The EMG was done on 2 muscles in the calf of my good leg for some reason and I was told all teats were normal. They suggested BFS. I was happy with that.
Nothing changed, in fact I now have thigh Atrophy - outer quad muscle. Doc confirmed the atrophy and is sending me back to the neuro. At this time I get a rush of muscle twitching in my upper abdomen after I cough or sneeze which is keeping my ALS fears on my mind. I can still walk, my leg gets tired fast and aches most of the time and the muscle has a burning feeling in it occasionally sometimes it even feels like it is vibrating. There also seems to be a tremor of my skin on the thigh, the wohle area between the knee and hip. Looks almost like the skin it shaking slightly from side to side. Not my leg shaking just the skin or muscle. I am also exhausted all the time and when I wake up I am mort tired then when I went to sleep.
My doc admits he is confused and says he has no idea what it could be - this obviously leaves me quite frustrated and scared. I asked him about ALS and he said he doubts it but can offer no other possibilities as all my blood work and tests are fine.
Hopefuls someone out there may be able to shed some light on this.
Thank you.
2 likes, 191 replies
gr0n sean73
Posted
Sean - any updates? I have *very* similar symptoms as you, started as twitching under my left forearm and soreness and stiffness there and my left ring and pinky fingers. Then 5 months later atrophy between my thumb and index finger (on the back of hand). A few months after that twitching started in both calves at the same time, then my right forearm and thumb. EMG done around that time by the neurologis suggested something called MMN (multifocal motor neuropathy) but they're not sure. A few months later it spread to my upper arms, upper legs. No noticeable additional atrophy. High anxiety. Legs and arms ache horribly (especially in the morning). Twitching all over. It's been 8 months since the first EMG and I'm going in to get another next week. Just want to get some answers.
makaela_96438 gr0n
Posted
Nicholcam86 sean73
Posted
Eileeny73 sean73
Posted
From what I researched about als is if you have twitching all over, it is not als. The twitching starts in one place and almost always after the muscle has already died. It's about failing not feeling. If you can still hop on one leg, jump up one step, turn your keys nd as for bulbar onset if you can whistle etc you do not have als.
makaela_96438 Eileeny73
Posted
Can I first just say how much relief it has brought me to see that I'm not the only one struggling with this...
My story starts like this... I'm a 30 year old normal, healthy female who struggles with OCD/Anxiety and depression. To add to that, I lost my daughter last year at 38 weeks to placenta abruption. 6 months ago I had my son or "rainbow baby" as they are called. Half way into my 2nd pregnancy I started having migraine with aura causing numbness and tingling on one side. My OCD caused to go straight to the internet which essentially told me I have MS. From there, my PCP sent me to a neurologist and he determined I was fine and it was most likely anxiety. Fast forward a few months to the delivery of my son, I had terrible migraines with aura and again felts numbness, heaviness and tingling on the right side (cheek, arm, leg, foot)... neuro basically said, again, its migraine and stress related, still no MS. My son is now 6 months and I have had progressive weakness and pain in my shoulder, elbow, wrist and ankle on right side. A week ago a I developed twitching all over and it has stayed constant. I at first attributed it to med changes and stress but it has stayed. I forgot to mention I went to mayo for all of this a few months back (I had abnormally high CK elevation for a few weeks (1500 and normal is 170), but I didn't have any weakness then or twitching. They of course did EMG, neuro exam, MRI, 24 hour urine test, blood work and of course found nothing. I am so stressed living with this every day. I cry thinking it's ALS and I have 1-5 years left to live. It's consuming my entire being. I can't seem to function at work, at home with my family, it's helpless. No one seems to find an answer to anything. Sending all hugs on here and I know how terrible it is to feel this way and to feel doctors feel you are exaggerating or making it up.
k.gilson makaela_96438
Posted
Hi Makaela, thanks for reaching out. I know exactly how you feel. I'm proud to say that after about two and a half years, while my symptoms have not completely gone away, I have almost entirely gotten over the anxiety and obsession over the symptoms that I was having.
The first thing you should know is that based off of what you've described, you should not be concerned about ALS. ALS is a possibility of course as it is with anyone but the fact you had a clean EMG and the fact your symptoms have only been similar to ALS symptoms for a month or two (correct? The twitching and weakness, not the migraines and numbness, as those aren't consistent with ALS at all), means the chance it's ALS is next to zero at this point.
Have you had cramps? Has your diet and exercise been consistent/good recently as compared to how it was, say, a year ago? The lifesaver for me was improving my nutritional intake, beginning to excersize regularly, and seeing a psychiatrist and psychologist.
Best,
Ken
jeremy04366 makaela_96438
Posted
Makela, the Mayo clinic was such a disappointment for me. They ignored my muscle atrophy because of a clean emg. There are a number of things that can cause your symptoms, things like lupus, connective tissue disorders and especially any type of myositis which usually has elevated ck levels. I had a muscle biopsy done which confirmed myopathy. Don't give up. I hate it when doctors tell you to just exercise!!
towel66279 k.gilson
Posted
makaela_96438 sean73
Posted
Can I first just say how much relief it has brought me to see that I'm not the only one struggling with this...
My story starts like this... I'm a 30 year old normal, healthy female who struggles with OCD/Anxiety and depression. To add to that, I lost my daughter last year at 38 weeks to placenta abruption. 6 months ago I had my son or "rainbow baby" as they are called. Half way into my 2nd pregnancy I started having migraine with aura causing numbness and tingling on one side. My OCD caused to go straight to the internet which essentially told me I have MS. From there, my PCP sent me to a neurologist and he determined I was fine and it was most likely anxiety. Fast forward a few months to the delivery of my son, I had terrible migraines with aura and again felts numbness, heaviness and tingling on the right side (cheek, arm, leg, foot)... neuro basically said, again, its migraine and stress related, still no MS. My son is now 6 months and I have had progressive weakness and pain in my shoulder, elbow, wrist and ankle on right side. A week ago a I developed twitching all over and it has stayed constant. I at first attributed it to med changes and stress but it has stayed. I forgot to mention I went to mayo for all of this a few months back (I had abnormally high CK elevation for a few weeks (1500 and normal is 170), but I didn't have any weakness then or twitching. They of course did EMG, neuro exam, MRI, 24 hour urine test, blood work and of course found nothing. I am so stressed living with this every day. I cry thinking it's ALS and I have 1-5 years left to live. It's consuming my entire being. I can't seem to function at work, at home with my family, it's helpless. No one seems to find an answer to anything. Sending all hugs on here and I know how terrible it is to feel this way and to feel doctors feel you are exaggerating or making it up.
scott6672 makaela_96438
Posted
2 points to make.
The reason why the life span after diagnoses is so short is because it does take so long to diagnose. The Drs have to rule out everything else.
There are over 20 different forms of ALS of which I am genetically susceptible to ALS 19 or 20. Whichever one I am genetically susceptible late onset with 5 documented cases each living into their 70s.
For 6 years I had the same or similar problems as most with test after test done in search of a cause.
We have it somewhat narrowed down to mitochondrial dysfunction where my body body wasn't converting glucose (or glycogen) to to energy for muscles.
I have been in remission (for lack of a better word) with no symptoms at all for over a year.
No exercise intolerance
No muscle pain
No extreme fatigue
No evidence of ongoing muscle wasting.
In fact I am able to fully use my elliptical at its highest settings for 7 and sometimes 10 miles/day
rebby23 sean73
Posted
Yes it could be something other than ALS. I'm suffering from a disease that is commonly known to mimic ALS. It's chronic lyme disease. I also have the coinfections babesia and bartonella. All you need is to be bit by an infected deer tick and you have it. I never got a bullseye and left it untreated. The first doctor I saw had to cancel out Parkinsons, ms, als, etc but couldn't figure it out but I kept looking. Find a LYME LITERATE doctor for another opinion. Warning, the blood tests are not accurate but most doctors won't tell you that. It's a very controversial disease. Seek your info from lyme disease alliance sites
Dps98025 sean73
Posted
If you are having unexplained symptoms after a gadolinium based contrast MRI please google Gena Norris's story. (Chuck Norris's wife) She has spoken to the press about this and her story is on you tube along with an FDA meeting from September of this year with people experiencing similar symptoms.
lauren25605 sean73
Posted
Mine started after I had my son 18 months ago. I was diagnosed with post natal anxiety and stuck on Ciralopram. My symptoms never improved and after numerous GP visits they referred me to see a neurologist.
Saw the neurologist who said he suspects I have Functional Neurological Disorder but ordered some tests. Had an MRI which came back clear and am currently waiting for the results of my Nerve Conduction test and EMG.
I’m so worried about it being ALS. My symptoms are all over twitching, even in my tummy. Muscle aching on slight movement all over, painful muscles intermittently, pain in my shoulder joint and knee joint. I’m terrified of leaving my little boy behind if I have something awful. Should I ask for any other tests?
Lauren
dhw232 sean73
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andrea84080 sean73
Posted
I'm scared. In December I started having heart palpitations every day. Then in January, my legs started twitching at night. I now have twitches in my face, back, both arms, abdomen, buttocks and both legs all throughout the day. This weekend I started having muscle weakness in my neck, arms and legs. Folding clothes leaves my arms exhausted. My right arm feels most of the weakness, especially in my hand. I'm getting a strange sensation in my throat. I get split second moments of vertigo. I have tried a few times while walking. I am 45 years old and this has all set in since December, with most progression over the last 3 weeks. I have to wait another 3 weeks before my first appointment with a neurologist. I am terrified.
angela59190 andrea84080
Posted
Hi Andrea. I don't know if sean73 is on here anymore because I tried to communicate with him no ths ago and gor no reply. I had this happen to me 15 months ago. I am now 44 I was 43 at the time. I was told by too neurologist at mayo and shands I do not have als. I had a illness thanksgiving2016. I woke up confused tired and my face was numb. I waited until the evening afyer I made thanksgiving dinner for my family to to the ER. Thought I was having a stroke. It went on for three no the and I developed gastroparesis at the same tume as my facial numbness. I had twitching from the waist down and burning sensations in my spine. I was very ill and sent go e from the ER Every time I webt told I had a virus. I go ally found a neurologist who said he believed I had. A mild case of Guillan Barre with miller fisher variant. Though my neuromuscular neurologist at mayo said they saw no evidence of it on my emg. My neurologist said I could have resolved by the time I went to mayo and therefore no emg evudence of the illness. I have been frightened for 15 months but I have no choice but to wait and see the tests can not prove you wont have anything just that they don't see it right now. So it is scary. I can only tell that since it started after the birth of your child it may have been Guillan Barre a mild case because many woman develop it during or after child birth. It causes muscle twitching because of the axonal loss but it will repair it takes a year to 3 yrs to repair. You should see a improvement in your symptoms at a year or less. My twitches slowed down after 6 months and now I may have a few a day but when I am really tired or get a infection they amp up a little but always go back to hardly any. I take Elavil to help with sleep 25mg at bedtime. I also take celexa 10mg for anxiety which I developed after the twitching and read what could cause it. While I was ill I had all over sudden acute onset of twitches everywhere all the time. They slowed to the few a day I have now. Hope this helps.
angela59190
Posted