Newly diagnosed with questons

[BNR1]

I'm new to forum- my fiancé has been told it is likely that he has ALS. His symptoms began aprox a year ago in his right ankle, weakness, dragging of foot- went to a physiatrist and Dx with drop foot, MRI's of hip and spine were all normal and he was referred to a Neuro. Blood work, heavy metal, ANA test all negative, no diabetes, no auto immune... high level of arsenic and mercury however, 2 EMG's were done but not sure of results, his other symptoms include upper extremity twitches (worse with anxiety) minor fatigue, muscle cramp in calves (especially at night). I was told a positive was that there has been no severe progression in the last year since drop foot began, however he has marked weakness in this lower extremity. He was referred for a 2nd op with a Neuro who did an EMG and we were told he likely has MND and a 70% chance of it being ALS. HW will return to this Neuro again in a few weeks to evaluate progression and discuss Relotek (sp?) as well as opportunities to get into clinical trials for ALS. We were told you really can't know you have ALS or PLS until it progresses to reveal more definitive signs... all you can do is continue to rule things out and wait and see what happens. Based on these symptoms what are your opinions on a diagnosis of ALS? Do any of these symptoms rule out PLS? Are there any tests or questions we should ask? Is it slow progression since no bulbar muscles yet involved? Any advice of where to go or what to do from here is appreciated! Thanks so very much!

 

[olly]

hi,and welcome to the forum.
with no emg results its hard to say,does he have any atrophy?
they usually wait about 3yrs to determine if its pls based on slow progression through the body(i am leg onset pls)and repeat clean emg's.
from what you say it does look promising ,though pls is no picnic it is the lesser of the two evils.
i wish you and your husband all the best:-D

 

[tag0620]

BNR1,
My husband started with a drop foot and weakness in his legs, then muscle atrophy, cramping in his calves, then upper body fasciculations...was referred from a physiatrist to a neuro (who is an als specialist) and diagnosed with limb onset als and prescribed Rilutek....

Him emg and symptoms came back very consistent with an als diagnosis and we were told that additional testing was not necessary.

BUT...something felt "off" to us...

They overlooked the timing of symptoms starting in conjunction with a ski accident/broken back, they overlooked the fact that he still had a herniated disc in his thoracic area, and they overlooked the fact that all symptoms other than the fasciculations stayed localized to his lower body for over 2 years.

We had to FIGHT for other testing.

We're on our 3rd neurologist (after an orthopede, a physyatrist, and two other neuros all rolled over and said..."Well Dr. X is an als expert") and it turns out, our "als" is most likely the herniated disc in his thoracic region....and we finally got a referral to a neurosurgeon who we hope will agree to operate with the recommendation of the new neuro.

I guess the moral of our story...is don't give up looking until you've exhausted looking...don't just roll over and accept the diagnosis until they/you are 100% (not a 70% chance)...be prepared to accept a MND diagnosis...but what "IF" it's something that can be fixed/treated. If we hadn't kept looking/fighting, my husband would have definitely been left with a life as a paraplegic...now we may have a 50/50 chance.

THINK HARD...mention any illnesses or injuries that he may have had...keep track of ANY symptoms or changes no matter how silly they may seem (we noticed sensory differences before the doctors did...i.e. lack of ticklishness on drop foot, pins and needles, cold legs, they then discovered he was unable to tell slight temp differences, pin pricks felt stronger higher up and duller further down).

The thing is...we've been blessed with another chance...but I wanted to point out that we had VERY similar symptoms and it turned out to most likely NOT be als...You still need to make plans just in case...BUT keep your hope alive and be your own advocate and look until it's there's no where else to look and it becomes evident!

Prayers are with you!
Tracy

 

[Shatzie]

I live in Tulsa, too. What neurologist(s) has he been to? I would really recommend getting an appointment with the MDA Clinic in OKC. They have an ALS Specialist there that I still go to, although he no longer thinks I have ALS.

 

[suzannj]

Hello,
I'm very sorry to hear that you and your fiance are going through such a trying time. And good for you for starting to dig, ask questions, and seek help. This is an awesome board and I'm sure no matter what happens you will find support here.

Something in your post really stood out for me: "high level of arsenic and mercury however"
Heavy metal poisoning can certainly do many negative things to the human body. You may want to explore something called "Chelation Therapy" I do not know more than just the very basics, and if your fiance's diagnosis stands, please know that chelation DOES NOT CURE ALS. Just something you may want to explore. Here is a quote from Wikipedia (note it very specifically mentions arsenic & mercury):

Chelation therapy is the administration of chelating agents to remove heavy metals from the body. For the most common forms of heavy metal intoxication—those involving lead, arsenic or mercury—the standard of care in the USA dictates the use of dimercaptosuccinic acid (DMSA).[citation needed] Other chelating agents, such as 2,3-dimercapto-1-propanesulfonic acid (DMPS) and alpha lipoic acid (ALA), are used in conventional and alternative medicine.

Wishing you much strength,
Suzann

 

[MtPockets]

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