Mnd?

[kbt9326]

My report says that "this is a mildly abnormal sensory and motor nerve conduction study with normal F wave studies. The abnormal EMG with rare sharp waves in a few muscles including right biceps suggest lower motor neuron pathology." All the lab results and MRI were normal. I have a referral to a neuromuscluar specialist from the neuro doc that did this EMG. The neuro doc said weakness r/o MND in the referral paperwork? I have right foot drop, I drive with my left leg now and I'm having more trouble walking and can't take stairs now except by one at a time and that is difficult. I can't open a lot of things or even carry a jug of milk anymore. I wake up coughing at night sometimes from my saliva, and lately have started getting strangled during the day also. I have twitching which was just in my right arm and legs, but now is starting in my other arm, ribs and my chin. I have cramps that I wake up crying with sometimes too. Does this sound like i have some kind of MND?

 

[Zaphoon]

It could be one of many things. You'll just have to be patient and let the neuro's go through the testing and rule-out process.

You don't mention how long its been since symptom onset. With ALS, it starts out insidiously, usually without you being aware much is going on. It usually takes a while for different parts of the body to be affected.

Zaphoon

 

[kbt9326]

The leg with the foot drop now started about 3 years ago, the right arm about 2 years ago. The other leg about a year ago. It has been very sneaky for sure and very gradual but I'm getting more and more weak every month now.

 

[Zaphoon]

To answer your question, as a layman and not a physician, I'd say that it could be a case of MND but it can always be something else until it can't be anything else but ALS.

Its strange, but many on this forum have hoped for things like MS or Parkinsons over ALS. At this stage, I'd be asking what else it could be other than MND. That grocery list can be very long.

I wish you the best in your quest for a diagnosed!

Zaphoon

 

[kbt9326]

The neuro doc said not Parkinson's, MG, or MS already according to MRI, labwork, EMG, progression and symptoms. He told me MND but wanted a 2nd opinion and is sending me to a MDA/ALS clinic. I think I'm in denial. I'm not very into doctors anyways, it took me getting to the point I'm at now to even go see the doctor. I think I've waited till the "plain as day" stage from what I'm reading in this forum. The neuro doc I saw was very kind, asked if I have children at home and about my family support, how was I able to even drive or work... etc. I hope the next doc is as nice, but it takes a few months evidently to get an appointment there.

 

[halfin]

Hi KBT - I'm sorry you are having these troubles, but welcome to the forum. As Zaphoon said, it sounds like your doctor is justified in seeing a potential for ALS, but the experts at the ALS center will be much more qualified to give you a reliable answer. I know it can take a long time to get in to those places, I hope they can do it in more like weeks rather than many months. I think it was about 6 weeks before they saw me first, but that was mostly just taking my history and a physical exam; it was another 6 weeks before they were able to schedule an EMG which led to my diagnosis.

Even though your doctors tests have largely ruled out other conditions, sometimes there are additional possibilities. MG for example is usually eliminated with a blood test, but that is not completely reliable. There are other tests they can do to help distinguish MG from ALS, and perhaps the doctors at the clinic may wish to pursue that, or other directions.

One good aspect is it sounds like your progression has been relatively slow and steady, so even if you get bad news, you may well have a much better prognosis than many PALS (People with ALS). And as you learn more about the disease you will find that with good medical support, if you take advantage of all that modern medicine can provide, survival prospects are much better than you commonly hear. But there will be plenty of time for that after you get more information from the clinic. For now I think your policy of denial is not a bad idea at all.

 

[kbt9326]

Thank you both for the words of encouragement and help with me perpetuating my denial. Does age play any role in speed/progression? I am 42. It just worries me that in the last 6 months things seems to be rapidly declining.

 

[halfin]

42 is on the young side for ALS, and they say that progression tends to be slower for young people, although there is wide variation. Hopefully that would improve your odds if you do turn out to have it. I wish you the best of luck in dodging this bullet.

 

[kbt9326]

I have my appointment in two weeks at the als clinic. Since my last post my total weakness has gotten so much worse, I waddle really bad when I walk now in addition to the "regular foot drop problems". I have a knot in my muscle in my upper right arm which won't relax and below it is a "crater" just above the elbow. I'm breathless when I walk and even when I talk for long. I went back to see my general neuro a couple of weeks ago about these worsening changes. He wrote me a prescription for an electric wheelchair and said he'd sign disability papers whenever I wanted them, but he still did not say what he thought it was, but on the script he wrote myopathy and I asked him if that is what he thinks I have, and he said, I have to put a diagnosis for the wheel chair, but you will get a diagnosis from the specialist at the als clinic... To me it seemed that he was saying.... no not really myopathy, just have to put something down? Does it sound that way to you that he doesn't want to say for sure what it is, or what? My wheelchair clinic appointment is next week and the als clinic appointment is the following week. Any comments/suggestions on the sequence of these. Will I find out anything at this first als clinic appointment?