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Suzannah

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Hi all,

I have been reading this forum for a few weeks and just have some questions. From the outset, I'll specify that I don't think that I have ALS, but I am having several issues with my legs that seem to indicate some type of UMN dysfunction.

I'm an extremely physically active 35 year old female. For the past several years, I have been having increasing problems with my legs. They are extremely tight almost all of the time in a very strong extension pattern. If I lay down on my back or sit with my legs extended, the tightness in my muscles pulls down my ankles and feet so that they are in a straight line with my legs, and my toes point down. When I sleep at night on my back, my toes point all the way down to the bed. It's very difficult to sleep because of the pain caused by this tightness. I can no longer flex my feet or walk on my heels because I cannot pull either foot up towards the shin when standing. This same extension pattern is in my arms, too, but not as severely.

I finally went to go see a neurologist (movement specialist) a few weeks ago. I picked up my report and she noted:

Spasticity in both legs
Hyperreflexia upper and lower, bilateral
Sustained bilateral ankle and pateller clonus
Wide gait with curled toes/curled under right foot
Some weird pupil reflex abnormalities (Not the technical term. Ha.)
Essential tremor

She was concerned about MS (me too) and sent me for a full brain/spine MRI. We were both surprised when it came back clear for both MS and any spinal injuries. All lab work clear, too. Not sure about weakness because she pretty much didn't finish the exam once she saw the clonus and hyperreflexia.

I'm going to see a neuromuscular specialist next Monday, and I'm guessing she might do an EMG, but I'm not sure what happens after that.

I'm not entirely sure what my question here is, either. But I guess I'm just wondering if other people here have had these symptoms and what the eventual diagnosis was? Does this sound like some kind of motor neuron issue? And as a sidenote, does anybody have any suggestions about how to ease/deal with the spasticity? It's driving me freakin' crazy!

Thanks for your help,
--Suzannah
 

Mediasmart

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in regard to your eye, did the physician mention Horner's syndrome by chance? My ophthalmologist found that in the midst of my diagnosis for ALS. The two aren't related so I'm asking a coincidental question.

Otherwise, you didn't mention clinical weakness or atrophy and Clonus I think is associated only with UMN, plus you haven't had an EMG so there is a way to go in figuring this out. I'm sure you'll hear it in response to your post, but don't let worry consume you. It just adds another layer to go through as your docs work this out.
 

Kosmoskatten

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Maybe what the neuro found (pupil reflex) was nystagmus.

An EMG would be a natural step, but remember that EMG's only show LMN issues. You should also get a full clinical exam, you say the neuro aborted it prematurely.

I have been in the process and had more acute symptoms since late last year ( mild symptoms before that ), and I am still in the loop to get a definitive diagnoses, so my advice is also to take it easy and live life to the fullest.

To alleviate spasticity, Baclofen and Tizanidine (Zanaflex) are two common drugs, but consult your doctor about this.
 

Clearwater AL

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It seems really strange... we have seen so many Threads almost identical to yours. Even down to the greeting and sign off. (Being scared or nearly freaking out.) But... fortunately we have been able to convince a few they do not have ALS. Also fortunately ... most were nothing more than anxiety issues they should have researched as much as they did ALS. You (and we) really won't know much until you have an EMG. Hope you get good news when you do.

PS. I noticed on your bio you have "TEXAS uni". Are you going to school there?
 

Tokahfang

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If your EMG is clear, you will be looking at things like Hereditary Spastic Paraplegia, based on your description.
 

Suzannah

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Hi all,

Thanks for your responses.

In answer to the question about the "weird eye things", I looked back at the report and it said:

Anisocoria (unequal pupil size)
Afferent pupil defect (pupils don't constrict similarly when exposed to light)
Vertical gaze palsy (can't track eyes upwards)

Those things may be totally unrelated to the rest of it - who knows.

To Clearwater Al - Your post made me laugh (in a nice way) because I've read all of those hysterical posts you referred to and tried really hard to make sure my post did not sound like that! I was wondering what part of it made you think I was freaking out, and then saw that I did in fact use the word "freaking" at the end of my post.

But that was just in place of an expletive to express my displeasure at not being able to find a solution to making my legs stop hurting so much :) Your point is well taken, though. I do know that anxiety can cause many neuro-like symptoms and have been reading about that as well. (And thank you for your response! I hope that didn't sound defensive - it wasn't meant in that tone at all!)

My graduate degrees are in health psychology and another health-research related field, so right now I'm just approaching all of this with my researcher hat on and a curiosity to put the puzzle pieces together. I'm not worried yet - just curious.

I'll have more info (or not) after my appointment on Monday. I know the EMG probably won't show anything since I don't think I have an LMN symptoms to begin with (which is why I don't think it's ALS, as mentioned in my original post). I'll let you know!

Thanks again for your responses.

Sincerely,
--Suzannah
 

Kosmoskatten

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I forgot to ask, have you been tested for lyme? And Myaesthina Gravis? Vertical Gaze issues can be present in MG, although I have learned it is more common that it is combined with ptosis ( drooping eye lid ).

Anyway, best of luck.
 

alsornot

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hi there kosmo.....i noticed your note..that you have not been diagnosed yet...me too....in winter 2012 i developed right leg weakness and foot drag..everything has followed as it does in ALS....fasciculation in my leg, muscle cramps in right calf and butt....feet and hand cramps... now walking with a walker outside of the home..i have always had breathing issues....moderate to severe dysphagia was diagnosed in winter 2012...no i am coughing and choking on everything from food dirink and saliva...even is i have long conversations i start coughing ....still no diagnosis....monday my family dr. called and said my evoke potentials indicates MS...then tuesday the hospital called and said i need to repeat the test as the machine was not working properly and i probably got a false positive for MS....i am so exhausted emotionally dealing with this.....all i know is , this is life now...its progessing downwards, no one's helping...it just the way i have to live...maybe one day i will collapse and they will figure it out...good luck to you......
 

Clearwater AL

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alsornot, I read in one of your posts ("my husband is a physician"). In the post above you wrote "no one is helping".... golly, I'm sure he has to be more help than most of us have to understand the diagnosis process, the terminologies and your symptoms. I'm sure your husband can guide you through your diagnosis limbo far better than many others here. I'll say, "Be patient" if he hasn't.
 

Lucid

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I had all kind of crazy symptoms last year, no neurologist could figure out what was going on. I then came across chronic mercury poisoning from amalgam "silver" fillings. Since i removed my 9 fillings and (very importantly) started detoxing (via klinghardt) everything has subsided. This is a very touchy subject for some, but from my own experience i can say there is something to it.
 

Kosmoskatten

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alsornot, I am sorry you have not received a diagnoses yet, but there is usually waiting involved on the road to answers. I have come to terms with the fact that I need to wait and do follow up testing. I would also like to ask you to start a new thread if you feel the need to discuss your symptoms further, instead of asking/discussing in several threads started by others.

I think your questions are best discussed with a neurologist, if you feel you are not getting the help you need from the one you are seeing right now, seek a second opinion. I read in one of your other threads that you feel your GP/neuro is not giving you a diagnoses to be kind, I highly doubt that is the case, since that would be malpractice.
 

gu1928

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Hi Suzzanah
I have similar symptoms like you tight muscle in one leg with atrophy.I have an appointment with neuro next week too
Please let me know what the neuro says in your case
 

alsornot

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hello there...just noticed your note to me....my husband has recently admitted he thought all along my symptoms were due to a MND but as a physician he has the stamina to wait it out until it reals its ugly final conclusion...i suppose like the neurologists it is a wait and see process, to see how far along you get in your symptoms to be absolutely sure....and my husband said why give bad news too early....and true .....time and going through the process of symptoms has given me an understanding rather than 14 months ago if the neurologist had said als i would of considered it a death sentence and now i know i can live with this until can't any longer....its all personal discovery i suppose...how has your journey been?
 

Clearwater AL

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alsornot,

My journey started 4.5 years ago with a limp from a weak left leg. First possible diagnosis was Chiari Malformation Syndrome. Numerous Neuro appointments spaced months apart. MND came into the picture about a year ago. PLS diagnosis last December 2013. Waited until I had report in hand before I posted it. But, the journey isn't over. I'm glad your husband is helping you through your journey. Maybe a long journey can be somewhat better news.
 

FSHolbrook

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What you describe are not the symptoms that I observed prior to being diagnosed. I noticed muscle loss in my hand and footd rop when walking. the foot drop was what got me to the neurologist. I also got very tired when walking. I truly hope that you do not have ALS.

Rick
 
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