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jcmom

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Hi there--I've been reading for a while, and was inspired to post by others on this forum who are raising kids and still searching for a diagnosis. I'm 39, married, with an 11 and 6 year old. My neuro history has been going on for 7 years or so, which started with dry eyes and pins and needles in my hands/feet and some left sided facial tingling. My mom has Sjogren's plus other autoimmune conditions, so I immediately went to a rheumy and although my bloodwork wasn't entirely positive for anything in particular, I did at that time have mild indications of inflammation. An EMG around 2004 showed slight sensory slowing on the left sural nerve. I've been on aspirin and plaquenil for this for 6 years.

Really, all was pretty stable until right after Christmas. I was playing a video game with my daughter when I noticed my right bicep had seized up. This arm stayed tender for a few days, then a few days later I noticed my right hand became weak and kind of floppy. In the next couple of days, this also included the left hand, then arm. During the month of January, literally all neuro hell has broken loose. I've had numbness, tingling, burning, in all extremities. I've had nights where I've felt electric shocks were coursing through my body. Numbness and tingling and burning also in my face and tongue. My tongue has felt weaker. It fatigues when I chew gum or eat chewy food. My throat at times has felt numb, and this week started that weird tightening sensation around my neck. Not that it is cutting the air off, but sort of like a tight collar. I've had fasics in arms, legs, back, stomach. Cramps in the arches of my feet and sometimes my neck and shoulders. My arms and legs fatigue easily while I'm doing housework.

So far, my brain MRI is normal (haven't had a spinal MRI yet), and all bloodwork including inflammatory markers, calcium and B12 are normal. That is when I started becoming concerned...no, downright anxious about ALS...when the tests started coming out normal. I'm due for my EMG tomorrow morning. My initial appointment with my neuro didn't show any clinical signs of weakness or gait problems, which was 2 weeks ago. I timidly mentioned being stressed about the possibility of an ALS diagnosis when my MRI didn't show MS lesions, and he said- "no, you don't fit the profile, but we'll do a thorough check anyway." Reading more about it, I see "the profile" can pretty much include any age, and though all this sensory stuff is not typical, many posters here seem to have similar stories to tell.

I'm worried, for myself of course, but mostly for my husband and precious kids. I see myself on a path right now, to try to figure out what this thing is, and I am praying with everything I have that if ALS is the answer, I am spared long enough to finish raising them. Reading your posts has been an inspiration and a comfort to me during this month of extreme worry. Thank you for taking the time to read this.
 

ktmj

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Some of the experts might disagree, but this does not sound like ALS to me. Too many sensory issues and onset too quick.



I for one know it's hard, but try to relax.
 

wright

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Hello jcmom

That doesn't sound a thing like ALS. The quick onset along with sensory symptoms makes me think of Guillian Barre' Syndrome (an autoimmune condition) or some other type of global autoimmune problem (possibly a vasculitis or small fiber neuropathy). I know you said you had blood work done, but not all autoimmune conditions are detected with blood work.

Your neuro was correct in saying that you do not fit the profile: you simply do not and it's not even close. If you hadn't mentioned ALS to him, he would not have even given it a thought.

Sit tight until your evaluation and let us know how it goes. Take care.
 

canfiet

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jcmom:

Good luck with your EMG tomorrow. I also remember hearing that all my tests were normal. It is very scary. I also started reading this forum 6-7 months prior to my official diagnosis and it was very helpful for me. The EMG will hopefully be very helpful to the neuro. Good Luck - Teresa
 

Zaphoon

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It doesn't look like ALS to me either. Let the medical folks figure it out but keep journaling the changes you're noticing. The more information they have regarding what is physically going on with you, the better.

Please try to be patient with the diagnostic process. It often takes a while...
 

brendapals

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jcmom,
Doesn't sound like ALS to me either, but I'm not a doctor. Please, please, relax, breath in thru your mouth, out thru your nose...over and over for about 10 times. You're going to be fine.
Let us know after your emg appt, and please try to relax a bit, those 2 kids need you.:)
take good care,
-b
 

jcmom

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Thanks everyone, for your encouragement. Probably not a surprise, but my EMG was clean (RUE/RLE, LLE). I even said, "Really? Clean? With all of this numbness, tingling, electricity?" My neuro shrugged, and set me up with a spinal MRI for my face and tongue issues and wants to repeat the EMG in 3 months. He mentioned small fiber neuropathy as a possibility, but I have to admit I don't know much about that yet. So I am among the group- "have symptoms, but no answers."

Again, I am inspired by you all. I have learned so much about this disease and of course pray I don't have it/develop it, but my eyes are opened MUCH wider to life. I will try to calm down, breathe, love my kids, and check in again with you all.
 

jcmom

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I have another question for you all. Where would you recommend going to get a second opinion? The nearest (but not really near at all) ALS clinics are in New Mexico and Mayo in Scottsdale. To my knowledge there is not one in Colorado. My neuro here just wants me to wait 3 months then repeat EMG. Maybe I should, but I also feel with my symptoms my anxiety is just through the roof. My rheumatologist just started me on Lyrica to see if that would help anything. I also made an appointment this week with an ENT to see if he has any ideas.

I'm still very worried--my fasics are increasing and my swallowing of anything but liquids or soft foods is impaired. I have tightening of my muscles in my throat and jaws and what feels like the base of my tongue. These muscles fatigue easily.

Any advice I would truly appreciate.
 

awieleba

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Hi jc~

I just wanted to say, hang in there. I know that this a scary time. You do seem to have alot sensory issue's that are not normally associated with als. The electric shock thing at night sounds similiar to what people with ms get, I dont remeber the name of it. I have been on a long path as well. You have a normal exam and reflexes and that is good, you cant get a diagnosed of als with a NORMAL neuro exam.

I do understand you wanting to go to a more expieneced place with nueromuscular disorders. I had an emg with my local and then a month later went to the als unvierstiy and that emg was the same-clean. I think that you should wait a longer period of time between emgs. My next one is at end of feb, that will be almost a year from last one. I wanted to get one in the fall but Knew that I should wait longer. If you are having these issue's that are serious to you , then start seeing a nuero at an als clinic but have to space out the appts.

You could also go see an ent, they can detect neuro muscular abnormalities. At least mine said he could. He did not see anything on my exam and I asked him to look real good for any thing that looked neuro related. You would get more info from a swallow study, I would think? I did not get one of those. Ihave stopped with all that (been a long road for me) and only going to Cleavland for a 2nd opinion and then leaving it at that.

Good luck and kids are the best distraction!
 
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