Could it be anything other than ALS

Hi  Our family are all i pieces at the thought that myu husband may have MND. All his symptoms started in Sept 2016 with gradual loss of speech ( literally just the odd word now which sometimes cannot be understood) and severe walking difficulties. Had an MRI Brain Scan = all clear in October. Finally saw a Neurologist last week who gave " possible MND " He is due to have a EMG on Monday and we are all petrified   Hope you finally get a good prognosis .

Hi Sean73,

I apologize in advance if this gets a little long.

I was researching my crazy symptoms and came across your post. I'm not sure when you made your post as it only says "over a year ago", but I was wondering if you ever got to the bottom of the symptoms that you were experiencing?

I have been trying to get to the bottom of my issues for well over 2-1/2 years, but I started having symptoms 3 years ago. Everything started with me just not "feeling right". There have been too many changing symptoms between then and now to share, but presently (and as for the symptoms that are similar to yours) I have a lot of general weakness, arm weakness, muscle spasms and muscle twitching/slight shaking- such as when I smile, my cheeks twitch. Or if I raise up on my forearm in bed, my arm shakes.

I have other symptoms that I can share later if it would be of any relevance.

What complicates figuring out the cause of my issues is: 1) I've had a lot of tick bites over the past 4 years and I had/have Rocky Mountain Spotted Fever (RMSF). Actually, my wife & 3 daughters have it as well (live in the country). 2) A lot of my symptoms are Lyme Disease symptoms, but the blood test was negative. 3) I just found out in Nov. of 2015 that I have what is called a Syrinx inside of my spinal cord. It is a cyst filled with spinal fluid and can push on the spinal cord and cause muscle issues among many other things. A person may have one and have no problems, while someone else may have one and have horrible problems, even paralysis. A year ago my neurosurgeon told me that the Syrinx shouldn't be causing me any issues. So, I'm not sure. My back causes me a lot of pain. I am a masonry contractor (but haven't worked in over a year and a half), so that hasn't helped my back problems.

And since I've had a lot of back problems, I have had to take pain meds over the years. I've been on methadone for over 10 years and I wonder if taking that medicine for that long has just caused some of these crazy problems. I'm waiting on an appointment for an infectious disease Dr. to explore the possibility of tick born diseases.

So... Is it Lyme Disease or some other tick born disease, the syrinx in my spine or issues from my medicine after 10 years? These things are what has made it hard to figure out.

Again, I know this was a little long, so thanks for taking the time to read it.

If you could let me know what you found out about your symptoms, I would really appreciate it.

TS3

Sean did you ever find out what was causing the twitching and symptoms? Hope you are okay.

Hi my name is Brittany I'm 27 and I'm not sure if I have anxiety or als I started having tingling on my finger tips so googled and als came up so I started to panic and than started having the symptoms such as spams all over and twitching and now my legs and arms are weak and my hands are weak and my fingers feel stiff . I breastfeed my 4 month old at night and I sleep with my arms above my head and on my elbows I'm wondering if that has messed up a nerve in my hand to cause this . My tongue also swells a lot and feels like food gets stuck in my throat and I feel like my speech is a little off what do you think als? I'm terrified I have 4 children who need me

Did you ever get a diagnosis?

Just wondering if anyone's symptoms ever started after an MRI with contrast? Or have you been tested for heavy metals?

There is also a medical term for the twitching that might be appropriate, BFS or Benign Fasciculation Syndrome.

Glad I found this forum. I am a 38 year old female and I'm also super terrified at the possibility of ALS. My symptoms actually started with intense back pain 9 months ago, in September, and some general weakness, tightness in my right leg. After one month the weakness seemed to go away, still had some back pain but much better so I was able to go back to work at least. A couple months later, I started getting some neck pain, and noticed some weakness and ratcheting of the muscle in my left arm, nothing major. Went thru PT which didn't help, finally had an EMG in March which was normal. In early March I started getting lots of muscle pain, but no additional weakness. Mid April I started to get very weak in my shoulders, and upper legs. Had to quit working started getting muscle twitches everywhere, not much in the face though. Also have ringing in the ears at times, and some night sweats. Also trouble swallowing bulky food without water and at times feels like my knees are going to pop out,so sometimes they are weak now too. Sleep has become next to impossible because I can't get comfortable and also stress. I am still walking but I can't walk for long before having to sit. My arms do feel like they are getting weaker but I can still grip and do most everything with them without trouble, it's just more difficult. I had a muscle biopsy last week which I will find out about in 1-2 weeks. I've had times of labs, all normal, and a MRI of spine (which only showed bulging disc and minor stenosis) brain MRI was done 8 months ago and that was normal. I've always been very healthy until all this, no family history of anything at all! I've been to a ton of doctors, no one knows what is going on and it's so frustrating. I'm a single mama with 3 young kiddos so I'm a little freaked out about all this.

Hi all, I just read this entire thread because I've been having similar concerns. I'm just trying to find some comfort because I'm a 21 year old girl and I feel like my life hasn't even started yet. I've been having a sore lower back and I've been doing so much driving/lounging around lately that I've noticed my legs feel tired and under-used. Last night I did the stupid thing and I started googling and I convinced myself I have ALS. Both of my legs have been very twitchy, but I do twitch when my anxiety is extremely high so I'm hoping that it's just due to my extreme hypochondria. Do

You guys think I have cause for concern? I have no other clumsiness and my arms/neck/face and everything else feel fine. I'm really hoping it's all just in my head and it'll just be another thing that I obsessively worry about until it just goes away. Any updates on how you're all doing would be much appreciated, I know I'm joining this thread kind of late!

I cannot tell you how glad I am that this thread exists and that it's still going. I've been having symptoms for about a year and I'm highly suspecting MS. Unfortunately, I will be unable to see a neurologist until the end of next month, so I am on pins and needles (literally; just some MS humor). Well, here I go with my history. 

I am a 20 year old girl. It might be worth noting that I was diagnosed at age 4 with Asperger's syndrome, with comorbid anxiety, ADHD, OCD, and later in life, depression. I've been on the same medications for years, so I have ruled out side effects as the cause of my symptoms. I am of average height and weight. This all started in May of 2016. I woke up one day and just didn't feel right. I didn't feel sick or anything, just, well, wrong. Like something wasn't right with me. I didn't think much of it, since it was the last day of the spring semester and I just wanted to get it all over with. The feeling never went away, but I pushed it to the back of my mind. 

I started taking long naps, which I had never done before. I was always tired and fatigued. Lack of exercise was not the cause because I frequently went to the gym (on the days I was able to fight off the exhaustion). My muscles ached a lot too, but I attributed it to the exercise. 

In June/July 2016, the eye problems started. I have myopia and mild astigmatism in my right eye. I wear glasses and contacts. Other than being nearsighted, I've never had any problems with my vision until now. I noticed the vision in my right eye started to get worse, and I began to see a dark floater. If I had to describe it, I'd say it has a grayish brown tint and is sort of shaped like a cigar. I've had floaters before - normal floaters. This was nothing I had ever experienced in my life. At first I attributed the blurriness to my astigmatism and just tried to ignore the floater. I also noticed that my eyes would ache when I moved them, like, it felt like my eye muscles were being pulled on. Eye doctor said everything looked normal, so I was like "okay whatever" and went on with my life. 

Fast forward to November. Eyesight still getting worse in my right eye, floater still there, pain in the back of my eyes, still extremely tired all the time. It had gotten to the point where my glasses and contacts weren't even as effective as they were before this all happened, and I could see better with my left eye without a contact than with my right eye with a contact. I'm a biology major, so looking through a microscope is pretty commonplace in labs. I couldn't use the microscope anymore because my right eye was so messed up that I could barely see anything. I went back to the eye doctor, she told me that I had a slight change in my prescription and that it was so small that I could still use the glasses and contacts that I had. I don't think it's such a minor change if I can barely see out of one eye, but again, I just went with it. I started noticing the twitching at about the same time. Legs, arms, face, hands, feet, pretty much everywhere. Again, thought nothing of it. 

December rolls around, and I start having the weakness and dizziness. It would vary from "wow, I'm a little dizzy, I should sit down" to "holy hell the room is spinning and laying down just makes it worse." I ignored it because at that point, I had made ignoring my symptoms into its own art. 

Spring semester was a complete drag even though I only had one class. I continued to ignore everything going on with my health. 

Over the past few months, I've just been getting worse all around. Weakness, pain, twitching, eye issues, fatigue so bad that I can't get out of bed some days, and horrendous dizziness. I've also noticed some cognitive impairment; it's hard for me to form sentences sometimes, I say the wrong words, and when I talk, my sentences are so grammatically incorrect that I'm embarrassed to speak sometimes.

Last month, I went to a vestibular therapist to be tested for vertigo. My inner ears are fine, but my eyes weren't. All the eye movement exercises hurt because of the aching in my eyes, and I got through 3 appointments with no luck. 

I was desperate for any sort of clue as to what could be wrong with me, so I did what everyone with internet access does at least once in their lives: I looked up my symptoms. I looked through a couple diseases that were similar to what I was experiencing, but didn't seem to fit. Then I looked at MS and my jaw dropped. Everything I've been experiencing was right there, including things that I didn't even know were symptoms and thought were just normal (frequent pins and needles, numbness, burning sensations in the face and neck area, urinary problems, constipation, symptoms worse in the heat, stuff that I thought wasn't concerning for some reason). 

And then I remembered that I have a cousin with MS and that my family has an extensive history of autoimmune diseases. I know that MS isn't known to be genetic, but the likelihood of having it increases if there's a family history of it and other autoimmune disorders. 

I have an appointment with a neurologist at the end of September, and I'm hoping to have a diagnosis relatively soon so I can actually live life with less pain. I have honestly considered ALS, but it seems that I have more symptoms of MS. Out of the two, I'd honestly rather have MS, anyway.  I'm honestly terrified of it being ALS and I'm trying not to bring it up to my family and friends because they're already extremely worried about me. 

That's pretty much it! I know, I wrote a book, but it seems like everyone here is sharing their health concerns too, and it's nice to have some support from people suffering from similar symptoms. I hope all of you can get diagnosed and treated as soon as possible. ??