Concerned I have ALS?

[ARACHNOIDITISORALS26]

Hi all, I have had quite the decline in health the past 2 years. I would like to give you all a little history of myself. I was always a skinny kid, so when i turned 15 i started getting into bodybuilding and powerlifting. I did that for 11 years until i was forced to quit in september 2014 due t symptoms. In 2010 I herniated my l5 s1 disc but it did not really cause any problems. Off and on over the years of 2008-2013 i got several gadolinium mris for migraines(important because gadolinium stays in the brain). they were normal though.
Off and on over the years I had gotten random twiches as well, and swollen lymph nodes in my neck. My igm/igg numbers are a little off as well. In 2013 i noticed that even after eating 3 protein bars per day in addition to my normal meals, i would take over a week and a half to not e sore from my workouts. i also got twitches more frequently.
I still was ''normal'' until september 2014 though!!!!!! this was when i noticed despite having very strong legs in the gym, i struggled having strength to ride my bike. Then september 14, 2014, my life changed! I was on a leg machine and my right thigh let out a huge twitch. my muscle was immediately spastic, with hyperreflexia and clonus. I got an mri on that leg and the right leg(because similar symptoms developed there too) and my mri was normal. I then started getting symptoms in my chest and full spine. I got spinal mris and besides my herniated disc at l5, I have arachnoiditis in the lumbar region. That doesnt explain the spasticity and hyperreflexia all over my body though. I HAVE SEVERE spasticity. 24/7 i am stiff as a board, and reflexes are BRISK. i have myoclonus too. i can no longer sit up out of a chair or bed because my back doesnt bend and my legs dont extend, i am 1 0/10 stiff. I went from benching 320 pounds to now i can barely lift a gallon of milk without my arms shaking....ive lost 30 ppounds since this all started as well, and look fat now!!!!
Just worrisome because hyperreflexia is an uppermotor neuron sign, and i have other symptomsof als.
i have seen about 15 doctors....5 neurologists. one moron told me i was normal and had nothing wrong with me(also had a clean emg feb 2015)...then i saw a few more, and got another full body emg august 2015 which was normal. I have heard though that in young men(im 26) emg isnt always definitive.
thanks

 

[Atsugi]

Not sure what you mean by "back doesn't bend and legs don't extend." Does that mean that your muscles are tensed and stiff, preventing movement? Or does it mean that your muscles are flaccid and never respond when you want them to move? Can you get out of bed? Can you walk?

 

[ARACHNOIDITISORALS26]

Yes i can get ut of bed, but i have to roll out because my back literally does not bend. it is stiff as a board. same with the legs. if i sit i na chair i cant straighten them in front of me. not flaccid

 

[lgelb]

Hi, AOA,
Your profile should be corrected because you haven't been diagnosed with any MND. And your description of above-and-beyond testing doesn't reveal any reason to think you have one.

However, you do sound like you would benefit from PT and massage from an MT who focuses on neuro. When your body is in a pain/stiffness cycle, it is hard to get moving and you want to break the cycle.

Hyperreflexia is a non-specific sign and in itself signifies nothing. If you keep chasing an MND diagnosis in lieu of a real life, you'll find only pain, fatigue and frustration. So instead, I would suggest you get back to living how you wanted to, fortunate as you are to have that option.

BTW, it is untrue that EMGs are less accurate in young men.

Best,
Laurie

 

[ARACHNOIDITISORALS26]

i actually was given a diagnosis of hsp by 2 neurologists but that diagnosis does not fit my history at all and 3 other neuros said i dont have it...so that's why i put that as my profile.
pt has only made me worse, been to three of them and baclofen and other drugs have done nothing either.

im not chasing a mnddiagnosis but would like to discover what's wrong with me.....not jsut hyperreflexia, but atrophy, spasticity, fasiculations, tremors, clonus.

with the emg i more so meant that sometimes people need multiple emgs.

 

[affected]

We only know ALS really really well.

You don't have anything that even remotely resembles ALS onset.

You've been told this, but I will just tell you as well.

I hope they can figure it out for you, but this is not the place for you.

I agree, change your profile, you say you've been diagnosed with HSP but then told it's not - so you don't have a definitive diagnosis or you would be still working with one of the neuro's that told you this.

All the best, this is not the place for you - that's great news!

 

[ARACHNOIDITISORALS26]

with all due respect i have all the als symptoms so i dont appreciate being dismissed so quickly.....
isolated none of these symptoms matter, but together they mean als or mnd. im not saying i have it, but i think saying nnothing i have resembles als is harsh!

my symptoms consistent with als-
hyperreflexia
twiches
clonus
spasticity
atrophy all over starting in right leg, then left, then going to upper body
weakness
trouble with ADLs like getting in/out of a chair or in/out of a car.
pain(now i know people on this forum say pain isnt associated with als, but given the different onsets ive seen people in pain)

noone seems to know what's wrong with me! arachnodiitis may account for some of this, but noone has a full picture!

 

[ARACHNOIDITISORALS26]

also isnt PLS or MS usually clean on an emg dos this sound like that? im sure people here know about those too.
thanks

 

[Gorby]

You are correct - PLS usually has a clean EMG. Some people have slight abnormalities, but they are different than ALS. Not sure about MS.

With PLS the neurologists usually look for other upper motor abnormalities to occur in addition to the hyperreflexia and clonus. For example Babinski and Hoffman's signs.

I don't know much about HSP. Why do you think your history is not consistent with that?

 

[ARACHNOIDITISORALS26]

You are correct - PLS usually has a clean EMG. Some people have slight abnormalities, but they are different than ALS. Not sure about MS.

With PLS the neurologists usually look for other upper motor abnormalities to occur in addition to the hyperreflexia and clonus. For example Babinski and Hoffman's signs.

I don't know much about HSP. Why do you think your history is not consistent with that?

Hi gorby . I jsut feel like the neurologists who gave me that diagnosis just did it because of the spasticity. I don't even present like an hsp patient. the doctor himself said he was diagnosising me with it but only cause he needs an icd code to rpescribe me antispasmodics(which didnt work lol).

My emgs have both been clean....im not sure if my babinski or hoffman's were abnormal. i dnt think they were though. I feel like arachnoiditis is the most consistent with my history and it also was shown on my mri, but im not even respondigint to arachnoiditis treatment like prednisone and people with arach dont have spasticity....they all can go take epsom salt baths but i cant get on the floor im so stiff

btw i had a question for the mods here. I got a private messaging saying because im new i cant post on people's threads. is that just for this section of the forum, and when will i be allowed?

 

[affected]

We have a sticky post at the top of this forum that says READ BEFORE POSTING.

If you read it all it will help you.

The final section answers your question and reads:
Finally…
ALSForums.com is a site for PALS (people with ALS/Motor Neuron Disease )and CALS (caregivers for someone who has or has passed away from ALS/MND).If you do not fit in one of these categories, then you are only a guest here. Remember we are not doctors or diagnosticians, so we will not diagnose you, but can only tell you if your situation sounds like our experience.

We are also people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading and replying to the anxiety-ridden can be very tiring. So we must ask you to carefully compose your post, do not just ramble; please create paragraphs and include salient info on age, sex, what the doctor you saw said, the exam findings and test results and clearly state your questions.

Also please stay on one thread do not start multiple threads if your original thread is still open post any follow up there. New threads may be deleted without notice ( remember this a second thread will just disappear)further repeat offenders may be banned; do not hijack other people’s threads and, as a guest, please confine your questions to the DIHALS area.

Please remember also that PALS expend considerable effort in answering you. If you have received a sincere reply even if it seems brief it is polite to say thank you; a group thank you is fine if you received several replies. It is disheartening for us to take time and energy only to be ignored.

Also, old threads are a great way to learn more, but when you read old threads and get panicked, please check to see if the person who made the post actually was diagnosed with ALS at the end. Your symptoms may be exactly like those of JoeBlow123, but it may turn out JoeBlow123 had a treatable radiculopathy or anxiety.
Finally, when we have answered your questions and it is not ALS or another motor neuron disease, it’s time to leave.

My note to end - if you are ever diagnosed with ALS you will be allowed to post anywhere.

 

[ARACHNOIDITISORALS26]

Ok hank you for the info ''affected''. Did you see post 7 in this thread? I jsut wanted to make sure you saw my als symptoms.
thanks.

btw why is the stay on one thread part bolded? i have one thread.

 

[Atsugi]

She bolded the rules for easy reference.
I deleted your other posts because we must enforce the rules fairly.
Many posts here will be short--they're easier for paralyzed people to read.
Some posts are harsh. Some posters have little patience for people who insist they have ALS and refuse to take "no ALS" for an answer. Other posts sound harsh because they need to be short.

You wrote: "Yes i can get ut of bed, but i have to roll out because my back literally does not bend. it is stiff as a board. same with the legs. if i sit i na chair i cant straighten them in front of me. not flaccid"

ALS is flaccid.

 

[lgelb]

AoA,
It really doesn't matter what sx you think are consistent with ALS, because you have had multiple serial EMGs that evidently didn't show lower motor neuron damage. So you don't have ALS. After 3y, even if your ALS presentation was UMN-dominant, we'd expect that LMN impairment would be appreciated on an EMG or clinical exam, with the extent of weakness and atrophy that you report. But it's difficult to parse because you throw around a lot of clinical terms and I don't know if these are subjective beliefs or objective findings from your exams.

As for PLS, if you have been evaluated at a neuromuscular center of excellence, that would be part of the differential. It sounds like you've been seen at several clinics, so figure out which one you trust most and get your notes to know what differential(s) they considered, rejected, provisionally accepted, definitively accepted.

So baclofen wasn't the answer -- have you tried tizanidine? Benzos? Massage? Acupuncture? Swimming? No, seriously -- neither HSP, PLS nor ALS has good dz-modifying treatment available, so why not focus on the symptoms and modifying their impact on your life?

 

[ARACHNOIDITISORALS26]

it's only been 1 year and a half since this all started. i was just giving background history. I was fine before september 2014.
Ive tried baclofen, tinazidine, flexeril, perhaps another? tried prednisone, as well as some disease modifiers like heavy duty nsaids for arach inflammation(ketorolac shots).
None of the neurologists ive been to were excellent. I went to one private guy early on. he was useless. he told me i was perfectly normal and in his wn words said i should go get laid and live life which regardless if i have als or not, i didnt appreciate that as my life has been ruined by this.

second neurologist said the same thing. she said she wouldnt diagnose hsp(the neurosurgeon thought i had that) because it would ruin my career being so young. she said she has no idea why i have these symptoms and im normal.

Then i went to a teaching hospital where they diagnosed me with hsp said i definitely have stuff going on, but they really dont know or think it's hsp. saw a few doctors there.

Both of my emgs were not even a year after i started getting all this stuff though.

I am confused why you are all saying als is flaccid when spasticity is a symptom lsited on many sites?

not sure which clinical findings you were wondering about...but the neurologists are the ones who mentioned clonus, spasticity, and hyperreflexia. while i have not had clinical weakness, i have to wonder how important that really is as you dont just have clinical weakness on your first exam.....fact is i went from deadlifting 500 pounds to arms shaking lifting milk....that's weakness.

tough not knowing what's wrong though!

honestly i think i may have some undiagnosed spinal cod injury in addition to my arachnodiitis spinal cord injury, but nothing was found that would cause umn signs.

i no longer see any neurologists. i am managed by a rheumy he i find wonderful. after 5 neuros i hate them all. wonder if my rheumy would knwo about babinski or hoffman's....isee him next week.