Worried I Have ALS

[Shawn7]

Hello everyone. Currently diagnosed with Anxeity & BFS, but unfortunately I'm showing more & more signs of ALS, & im terrified of this impending doom...

OK so My name is Shawn I'm a 30 year old male & this story starts just before my 29th birthday. My suffering started about march of 2015. But before I get into that my earliest symptoms of something wrong started with My toe twitch in early winter of 2014. It lasted about a week so I didn't pay much attention to it. Then in the same year I was training To be a FDNY Fire fighter & going to the gym regularly. I noticed that I would tire quickly, & get sharp back pain & ankle pain while running. I thought I was getting shin splints, so I bought shin wraps, running shoes & I still got no relief. So I pushed on, trying to achieve my dream.

Now we get to 2015 when my suffering truley started. In March the twitching returned this time in my upper back on the right side. Since that day my body has twitched every single day till now. So after the first 2 weeks of persistent twitching, I went to the ER. Big mistake because The ER is not equipped to diagnose these symptoms. The Dr's said that I was overworking my body & stressing over the FDNY test & that's why I was twitching up a storm. So after that the back of my head would twitch. I would put my hand on the back of my head & I would feel it firing away. After I noticed that my eyelids followed by my legs chest everywhere. I also started getting numb constantly & get the pins & needles sensation. I would get lightheaded when I stood up, and fainted a few times. Additionally I felt that my reflexes were really sensitive. So I was referred to my 1st neuro in Staten Island NY.

I told her my concerns, & she gave me a office test (where they do strength, coordination etc) so I also had a EMG & MRI done for brain, neck, & later lower back. It was determined that I had a pinch never in my neck according to the EMG & a herniated disc in my lower back which I believed was causing the back pain. (The EMG was on my left foot and upper back I believe) Nothing else was reported & I was diagnosed with Anxiety BFS. But The neuro seemed very dismissive to me so I went to my second neuro in SINY

In the mean time my GP told me To address the fainting I had. So I went to have a full workup with a cardiologist. Stress test, tilt table test, came back fine. This is still 2015.

As I seen The 2nd neuro in SI, I told her that I was concerned & so she just reviewed whatever the 1st neuro had said & gave me the same diagnosis. (BFS anxiety) However by that time I noticed that my left leg had been feeling strange & my hands were feeling weaker. I would have to support my wrist to hold my phone or it would tire & switch hands because of it. Also I noticed that my left thumb was smaller than my right, & if I hold my thumbs in a certain position close to my palm, both thumbs would tremble. (Still do) but again the neuro thought it was all in my head. So from there I requested to see a orthopedic doc for my left leg weakness.

He determined that my left leg was indeed weaker than my right & had a low suspicion of MS. No structural damage was recorded. So all I could think about from there was MS. I was convinced I had it but needed a better Neuro to detect it. So late 2015 I went to a MS specialest in Mount Sinai Hospital in NYC. I wanted answers.

Now Its early 2016. My symptoms are slowly getting worst. My left leg started buckling, hands getting weaker, (holding phone with one hand alone is tough) twitching everywhere, numbness, & My left quad started to hurt (still does)....So moving onward I go see my current nuero who is a MS Specialist & I told her my symptoms. She did office neuro test again like reflex, standing on one foot etc &?determined that I'm not "MS weak" but still ordered another brain MRI & EMG + Blood test. Everything came back normal. The EMG was done on my left leg and left hand. I told her my concerns & she reviewed the pervious test I had done from the pervious neuro & wasn't concerned. She agreed about the minor herniated disc in my lower back, but said that the Dr whom preformed the EMG for her wasn't worried so that was that. I had the feeling that since I'm younger than some ALS patients, it would take longer to show a dramatic effect on my overall strength.

Ok so At this point it's about summer 2016. Im still getting twitching everyday all over, numbness, lightheadedness, left leg weakness but again not weak in her eyes, even though the Orthopedist said that my left leg was indeed weaker than my right. & tongue twitching. I did not research tongue twitching the symptom 1st appeared so I wasn't alarmed. What did alarm me though was the leg tremors that I started to get. If I hold my left leg in a certain position it shakes violently. Similar to how my thumbs react when I bend them or hold them close to my palm. In hindsight now That I'm writing this, I noticed that I was stuttering a lot more than normal. But I'll get back to that.

So I go back to my MS neuro & showed her my leg tremor & I believe it's either caused by weakness or a nerve issue. Also noticed left quad is smaller than right. So she went over my concerns with me again & prescribed anxiety pills & gave me an MRI on lower back again checking for MS. Clear so she's insisting NO MS. I mentioned the dreaded ALS as a possibility & she seemed upset that I did. Said at this point in July more symptoms would've presented itself.

So onward to October of 16 & my symptoms are worst than ever, I don't know what to do, pills have no effect, hand dexterity is getting more uncoordinated, I would drop my phone if it accidentally hit something. Standing is uncomfortable because I'm constantly locking my knee otherwise my leg would buckle. Right leg felt tired as well. All for libs have an issue. So another doc's visit, checking my symptoms, office test every time I went in, looking for MS. So she ordered a Neck MRI, but insisted it's all in my head. So now it's Nov 16 & I figured to try & forget about it because if that neck MRI had anything on it, The hospital would call. Received no phone call so I now do not believe I have MS, & only other option left in my eyes is ALS.

Now a month later is present day. I can't shake this ALS possibly, my tongue began twitching again. Nerves twitching mostly in left leg, tongue & upper right chest near shoulder blade. I looked up tongue twitching online & it said If your tongue twitches you have the disease. I'm frightened to death. Noticed when I wake up my hands a stiff & weak. especially my pinky & ring finger. So I set up an appointment with a new neuro in SINY & my MS neuro who has been insisting all this time that I do now have a neurological Disease coursing through my body. Again really scared, noticed that my speech is being affected. I stutter constantly, often slur words that start with "L" & "S". If I talk slow enough, my sentence comes out normal. My appointments are in a few days & I can't think right till then.

So in closing, what does anyone think. I'm on this site because I believe that I have it, & I wanted to write all this stuff down....God Bless, & any information would help me.

 

[Shawn7]

Sorry didnot proof read. *My current MS Neuro DOES NOT believe I have a neurological disease coursing through my body* but haven't had my appointment with her yet. So she doesn't know about my latest symptoms of tongue twitching, neck pain & weakness + stuttering. Again thanks for anyone's input & God Bless & have mercy on all of us

 

[WendyWooG]

Hi
At the top of this sub forum there is a yellow highlighted sticky called Read before posting, read it through you should find it very informative and reassuring. You mention lots of things that have to do with sensory symptoms, numbness tingling pain. These point away from ALS as als only affects the motor function. Twitching can be caused by so many things.

You say you are young for als and you feel that this may be why you have slower progression, als doesn't work like that. To put this in context for you I was 47 when I first went to the doctor about symptoms a limp and being unable to go on tiptoe on my right leg. That was early 2015, as of now I can't walk and am just getting to the stage that I cannot stand so need a hoist for transfers and have lost the use of my left arm, my right arm is also losing some function. I gather this is fairly average progression.

Try not to focus on als approach your doctor and ask them to widen the investigation, ask them what could possibly cause these symptoms rather than do I have ALS. Stress and anxiety over your problems can make things so much worse and can make things harder for diagnosis, so ask your doctors with help in coping while they try to find out what is wrong with you.

I wish you luck, and hope you find some answers soon.

Wendy

 

[Shawn7]

Thanks for your support & response Wendy. Just expressing my concerns helps a bit because most of my friends don't like talking about things like this.

I couldn't find the sticky post that states "please read before post" but yes I get numb easily & the pain I feel is always after using the muscle. My lower back pain is the worst, but I read somewhere that the pain could be attributed to the stiffness in my muscles which is caused by ALS. So yes I'm frightened to death. This has been wearing me down since march of 2015 so I think I kept my head on straight for quiet awhile. I'll take your advice & ask my Dr for other possible causes, but I think by now she would've found it.

God Bless you & your family, stay strong, & hopefully someone will have good news for me in 2017. However I feel hopeless

 

[codyclan]

Shawn,
Nothing you wrote stands out as ALS to me. Really, nothing. And your docs have also told you that. Feeling weak is not the same as clinical weakness and ALS involves clinical weakness. Your docs can pick up clinical weakness really quickly, and they have clearly stated that you do not demonstrate clinical weakness. One leg being weaker than the other, is still not necessarily clinical weakness.

It is important to work with your doc to find out the cause of your symptoms, but it does not seem like ALS. Relax and appreciate your life and wait for your next appt.
Tracy

 

[Shawn7]

All feedback I greatly appreciate so thank you Tracy. It's hard to focus on daily pleasures for me because I do not come from a wealthy family, so I pray to god that ALS is not the cause of these many many symptoms I'm showing. If true, life after dignosis will be challenging. Yes the weakness that I currently exhibit has not yet convinced my Neuro that I have ALS. But I've been dropping things, switching hands when I hold my cell phone because they tire easily. And now I'm realizing that I have difficulty pronouncing words that start with letters "S, T, & L". I also have neck pain & chest pain. (Center of chest) And I yawn A LOT. I've read that those are heavy signs to ALS. Again my cardiologist said that my heart is healthy. So it's probably a muscle problem. Also My fraternal twin Brother & I are both Vitamin D deficient. He too is exhibiting nuero symptoms. The more I research the closer I feel to this disease.

I know I'm not the only one dealing with this potential fate, so I wish everyone on this site the best life possible. I just think I would be devastated if it does become true. I have to admit I'm mentally weak. But I know this is a serious condition & the prognosis is just simply terrible.

As always god bless everyone & thank you Wendy & Tracy for your feedback. I'm sincerely greatful for this site, because at least I can express myself during this time of fear. Well wishes everyone, & happy new year. I Cannot wait for my next appointment

 

[WendyWooG]

Shawn
Chest pain and neck pain are not symptoms of ALS. Vitamin D deficiencies could be causing your problems so hopefully the doctors will be treating you for that. ALS doesn't start with widespread symptoms all over usually.
ALS is not a muscle problem it's a disease where the brain cells that control motor function die, this means they stops sending instructions to the muscle and the muscle then stops moving.

The symptoms you are describing do not sound like ALS, talk to your doctors and trust them.

Wendy

 

[Atsugi]

Shawn, I read your first sentence saying 'I'm showing more and more signs of ALS." Then you wrote a long post and didn't say one single thing that might be ALS.

You wrote about a lot of non-ALS things (even yawning!) and then wrote, "I've read that those are heavy signs to ALS." No, none of that has anything to do with ALS. All your symptoms point AWAY from ALS, and that's why your doctors are blowing that off.

If you must worry, worry about something else. Tell you doc how worried you are--she might give you something to reduce your anxiety.