Should I be looking at a diagnosis with 3 letters instead of 2?!

[4happygnomes]

I'm starting to become really concerned with how fast "this" has been effecting me and wondering if what I have is ALS instead of MS?

My ability to walk is getting much worse, my legs are weak and fatigued most of the time.  I have had 2 nights were they were completely paralyzed, could not move them to get my daughter out of her crib.  They are very heavy at night, and I have a hard time getting going in the morning or from a sitting position.  I've had an increase in muscle twitches/sensations on both sides of my legs/feet.  I try to walk on the treadmill, and towards the end of my "work out", they are moving, but I can't really feel them.  I struggle to walk in the "real world"

I periodically get a really stiff neck and it feels inflamed and then it's like I have a lump in my throat.

And so far all testing has come back "normal"..which, of course there wouldn't be any lesions to be found if it were ALS.  

I've have asked 2 of the 3 Neuros in the past if it could be, and based on their testing (strength testing, nerve conduction), they say no. But they also say they don't think I have MS.  How I can be this hard to figure out when I have so much going on and it is going downhill so fast??  

Feeling a little freaked out...=(

[4happygnomes]

Hi, I did have an EMG/nerve conduction test of my left leg in November...those results were normal.   Thanks for the suggestion though, appreciate it!

Karen

[hc1]

Have you had an EMG of your legs?  That would rule out ALS pretty easily I think...

[4happygnomes]

Thanks again for putting the logical into my temporary (although becoming more permanent) freaking out mindset.  

I just can't wrap my head around all that is happening/happened without a reason...and I guess the reason isn't really going to change my reality.  Blah!

Karen

[4happygnomes]

It really is quite frightening, isn't it?!  Something that should be so natural as to being able to walk, is so difficult!  I thought FOR SURE, they would find lesions on my spine...shocked when it came back clean.  

Sorry to hear you've experienced the useless legs as well, thanks for responding...I know with such great people on this site, regardless of what I'm going through...I am not alone during a very confusing and scary time.

Karen

[4happygnomes]

Thank you Alex for your response, I am being as persistent as I can be...squeakiest wheel in the waiting room these days!    I have yet another consult with the MS specialists at Mayo in Feb...this is a referral from the regular Mayo Neuro who has done all the testing so far and can't come up with a reason for all of my symptoms.    It is just mind boggling to me that all this time, all this testing...I'm getting nowhere...figuratively, and really....quite literally!  =0   Stuck with no answers...and stuck!

Thanks always for taking the time to give me your insight, it's so appreciated!

Karen

[supermum_ms]

Hey babe,

Whilst ALS may not have the same MRI evidence as MS, you are unconsciously over looking all the other diagnostic and clinical evidence of motor neuron diseases like ALS.......

"Diagnosis is made on clinical grounds, using internationally recognized consensus criteria, after exclusion of conditions that can mimic ALS. The Revised ALS Functional Rating Scale is currently the most widely used assessment tool;......."  

"Revised Airlie House criteria, 199852 (incorporating the Awaji–Shima criteria, 200853)*

DEFINITE ALS:
Clinical or electrophysiological evidence,
demonstrated by the presence of upper and lower motor neuron signs in the
bulbar region and at least two spinal regions, or the presence of upper and lower motor neuron signs in three spinal regions

PROBABLE ALS:
Clinical or electrophysiological evidence,
demonstrated by upper and lower motor neuron signs in at least two spinal regions, with some upper motor neuron signs necessarily rostral to the lower motor neuron signs

POSSIBLE ALS:
Clinical or electrophysiological signs of upper and lower motor neuron dysfunction in only one region, or upper motor neuron signs alone in two or more regions, or lower motor neuron signs rostral to upper motor neuron signs

*These revised recommendations emphasize the equivalence of clinical and electrophysiological tests in establishing neurogenic changes in bodily regions. "

https://www.neura.edu.au/sites/neura.edu.au/files/Clinical%20diagnosis%20and%20management%20of%20amyotrophic%20lateral%20sclerosis.pdf

Please don't let your ALS thoughts spin, where your going with this thought just doesn't add up to the clinical evidence you need for ALS to even be possible!

Hugs...........JJ

[bbassel]

I experience everything that you do with your legs. I was diagnosed in march 2013 and by august I had problems with my legs and walking. It happened incredibly fast for me and I was having relapses every three months
I have lesions on my brain and spine though and more than likely have had it for a long time.
The paralyzing of the legs is the worst because you cankt kneel to crawl or situp without falling over. It is very scary when it happens because I feel helpless that I can't take care of myself.
Just thought I would share to let you know you are not alone :)

[HVAC]

I would keep going to my GP and saying there is something wrong I do not know what it is but it is serious. I kept doing that until they found my cancer. I am not saying you have cancer because your symptoms are not cancer. I just did not push hard enough and my cancer went on until it was advanced before they found it. I always thought doctors would know if I had something seriously wrong and do something. Mine felt really bad they missed it.

It took over 40 years for me to be diagnosed with MS and over 4 to be diagnosed with cancer. I now know I have to be my own advocate. Not get emotional but keep saying it is serious and I am scared.

Before my two diagnoses the doctors and staff would roll their eyes at me. Now they listen and see me right away. It is sad it took so much to be listened to.

Alex

[4happygnomes]

Thank you Poppy for your response!  It has been suggested to me by friends that I try the gluten free route and I have transitioned my diet to avoid it as much as possible.

I do still find myself eating it now and again, which I understand would defeat the purpose of "fixing" me if that is truly my problem.  I haven't had any official testing done to see if I am sensitive to it, but definitely will ask about it at my next appt.

I have some serious ataxia problems going on that will be looked at when I meet with Mayo's PT department in Feb.  I would just like to know the "whys" of all this!  

It's very hard, because it's not just me that is "sick", but my whole family is being impacted by a condition that has no name right now.  Breaks my heart...=(  

Thanks again for your input, I appreciate it!  

Karen

[Poppy7402]

First of all, take a deep breath.  :-)   I wouldn't immediately jump to thoughts of ALS as, from what you've said there are a number of other possibilities.

Have you been looked at for things like ataxia and/or non celiac gluten sensitivity/gluten ataxia (HLA-DQ6 gene)?  The Ataxia UK site has some really good information on this - there are many, many different types of this.

The reason I've mentioned the gluten thing is I do know a couple of people who have exactly the symptoms you've mentioned, one in the UK and one in the US.  There's a free article floating around the internet "Gluten sensitivity, from gut to brain" by Professor Marios Hadjivassiliou that you may find interesting to read.  

Anyway, just throwing a few ideas out there that will maybe give you a little bit of hope that things will turn out okay in the end.

Take care  :-)


Poppy