In the process of ruling out ALS

[Savannah9]

My husband is really having a hard time right now coping with his symptoms and what they might mean. I'll list what he's been going through:
For the past 8 months or so he has had what feels like weakness but when he's active he can do everything without limitations. It comes and goes. His first symptom was a tingling to his lower extremities that felt like pins and needles. Now he gets the tingling sensation in other areas too. One day he has no symptoms (weakness or tingling) and the next he does. It has not been progressive. His cpk was checked two weeks ago and was 301 and last week was 252. His ncv was normal and his emg showed unexplained neurogenic potentials in certain muscles of the lower extremities, no radiculopathy, and benign muscle twitching is the possibility but clinical correlation and repeat emg recommended. It also says in the notes that he has brisk reflexes in the lower extremities with plantar flexions. He has had muscle twitching in his calf muscles for the past 20 years and fasciculations and psw's showed up in those areas on the emg. For the past 5 months or so he has had muscle twitching in many different areas (arsms, hands, shoulders, legs, etc.). His primary doctor said the emg was inconclusive. He is in the process of trying to see a Neuro.

Has anyone had symptoms like these? I know ALS is both umn and lmn but would his brisk reflexes alone be considered umn? Any information would be greatly appreciated.

 

[momap53]

Have you read the stickies?

 

[rose]

Savannah,

There are other forum members more qualified to help you with understanding what correlation his exam findings have with UMN dysfunction. I wanted to say that when I read through your well thought out post, that it made me wonder if perhaps he has two processes that are not necessarily related to each other ongoing at the same time.

Plantar flexion is a normal response. If he had exhibited dorsiflexion (upward movement) of the big toe, and 'fanning' of the other toes, this is called the extensor plantar reflex, or Babinski reflex—which is abnormal.

I know it may not seem like it, but it is early on in his diagnostic journey. 8 months I'm sure feels like an eternity, but as it turns out, it really isn't.

That his perceived 'weakness' comes and goes, could also be a definition of fatigue, many, even doctors, tend to use the terms interchangeably, but, it is important to differentiate when trying to find the cause for the problem.

Just know that many standard screening tests can not be conclusive enough. If his EMG was inconclusive, single fiber emg is extremely sensitive and will uncover mysathenia gravis, even if blood labs don't have the markers for it. You didn't mention his NCV test results, but they are important, because, if they are not normal, that points to many different conditions. Another screening test for myasthenia gravis is the repetitive stim NCV, it will show if fatiguing a muscle causes change.

Tingling is not a symptom of myasthenia, but variable weakness is. Tingling can have a host of causes.

Has he had a spinal tap/lumbar puncture?

good luck and try not to worry. If you can reassure him that there are many MANY people out there who are not classic textbook cases, maybe that will help him cope better. I remember how everyone—my family, friends, neighbors (lol)—expected me to have answers in a couple of months after I started being evaluated. They would infer that maybe I needed to go to better doctors, when I was going to the best in the area I lived in. I'm just saying, we live in an instant gratification society, with Dr House solving impossible cases within an hour's span on TV, and real life is not like that.

 

[Savannah9]

Hi Rose,

Thank you so much for your time and response. We have an appointment in January with the neurologist and waiting is so very hard. His ncv tests were normal but he's having sensory sensations (tingling, pins and needles) in mostly his lower extremities. I was just really concerned when I saw that he had brisk reflexes in the lower extremities. We already know he's showing LMN dysfunction but the possibility of the UMN as well is extremely frightening. I will go back and read the stickies and see if I can get any other information. Again, I really appreciate your time in reading and responding to my post.

 

[trfogey]

I was just really concerned when I saw that he had brisk reflexes in the lower extremities. We already know he's showing LMN dysfunction but the possibility of the UMN as well is extremely frightening.

Has a doctor told you that your husband has LMN dysfunction or has your I n t e r n e t "research" about the results of the EMG suggested that possibility to you? From what you have described here, your husband isn't showing any LMN symptoms. Unless you've left out a lot of clinical symptoms that any doctor would have seen and noted, there's no clinical weakness, loss of muscle tone, loss of deep tendon reflexes, or muscle atrophy -- the real manifestations of LMN damage -- which is probably why the neuro that interpreted the EMG results has said that the muscle twitching is benign.

Next, you say that the "weakness" that he complains of comes and goes. The weakness that comes with ALS never gets better because it is caused by muscle paralysis -- portions of a muscle at a time -- and it is progressive (always getting worse). Your husband has no permanent weakness, no progression to speak of, and no paralysis. ALS is both progressive and degenerative -- your husband has neither progression nor degeneration. Why is ALS even an issue here?

So, what are the mysterious LMN symptoms that your husband is showing? And you really should ask your husband's primary care physician what the EMG was inconclusive for.

 

[HelenL]

Sounds like you've received some great comments, but I'd like to add one more to it... the tingling and "pins and needles" are sensory, and not seen in ALS... I'm assuming things like diabetes has already been ruled out, and other neuro stuff like peripheral neuropathy which my Dad had.

Good luck!

 

[Savannah9]

Thanks everyone for your comments. You have been very helpful with your suggestions. We'll see the neurologist in January and hopefully he can shed some light on what is going on. I think with the EMG results (fasciculations and PSW's found along with brisk reflexes) it just "confirmed" what he was worried about in the first place. Now he's second guessing himself if he is actually feeling weakness versus fatigue. I know that nerves/anxiety can alter your perception of what is actually happening and that is probably playing a heavy role in this. His doctor said he couldn't rule out anything at this point (ALS being one of them) so naturally that's what occupies his mind. I've read a lot from the different forums here and I think it's great that so many are willing to take the time and shed some light on their experiences and give advice. I hope the best for everyone that either writes in to this support group or even has the cause to read it. Take care and thanks again for your responses.

 

[limegreenphysicist]

Hey Savannah,

I know you guys are worried. When I was in the diagnostic process, which Rose is right can be very long, it helped to read about people that had everything going on that I had but didn't have ALS...it may not work for you but I'm going to give it a try...you wrote "EMG results (fasciculations and PSW's found along with brisk reflexes"......I have all those things on my EMG and brisk reflexes. I wont go into my results you can search my name and get my very long story

Here's my attempt at uplifting your spirits....I was diagnosed with multiplex also known as multifocal neuropathy. I will keep you guys in my thoughts but just a little advice...whatever happens in this life happens but if I've learned anything from the last 2 years is to enjoy every minute so you guys enjoy your holiday and let your neuro figure it out in January. Meanwhile, Merry Christmas! Hope it helped even a little.

 

[hopingforcure]

Hyper reflexes are always a UMN symptom... If I can answer anything let me know?

 

[Savannah9]

Hi limegreenphysicist and hopingforcure,

Thank you for your posts and great advice. I know the disease process is different for every individual but it opens your mind to all kinds of possibilities when you talk about your experiences. I find that this information helps when you are talking with the doctor and to ask questions you might not have thought to ask before. He's just displaying some signs that could be a wide range of possibilities but this possibility has been on his mind for awhile now. I would never self diagnose but it's human nature to fear the unknown! One thing to point out that the doctor dismissed at first was statin myopathy/myositis. He started noticing these problems about 4 months after he started the Zocor but stopped it about 5 months ago. His doctor wasn't convinced that was the problem since his symptoms are still present but he's not ruling anything out now. I originally thought this might be the culprit but as his anxiety has increased so have his symptoms (they go hand in hand I know). His doctor wasn't able to "rule out anything" after his EMG and NCV because he said he just didn't know enough about it, so that's why a neurologist is the next step. Patience is something we both are learning and by reading so many posts (and the stickies now) what we're going through is nothing in comparison to so many people. I really applaud everyone for keeping this site going and for offering so much support even when things are probably the most trying that they've ever been. Merry Christmas and you are all in my thoughts and prayers.

 

[Savannah9]

Hi hopingforcure,

I have a question about the hyper reflexes. During the EMG/NCV my husband showed "brisk reflexes of the lower extremities" and I know that some people naturally have that (without there being a clinical problem). I would say he has an increased startle reflex and has been that way his entire life (he's 48 now). If he's alone and focused on something you can startle him so easily--we've laughed about that so many times in the past because it's always seemed exaggerated. He can't remember anyone ever telling him he's had brisk lower ext. reflexes but being that he has always startled so easily could that go hand in hand? If that's possible then that might help calm his nerves about that part of the exam. Thanks for any input......

 

[xoinnamorata]

My doctors are all focused on my brisk knee reflexes, but they have been jumpy for as long as I can remember. Maybe not to this degree? I don't know. A good portion of normal, healthy people have brisk reflexes. My mom, dad, and sister do, as well. The brisk knee reflexes don't personally give me much concern as I can basically remember them always being there.