No ALS diagnosis, but still worried

[gr0n]

Hello! I apologize, but I hope I'm just one of the "classic" over-anxious people without ALS that end up annoying everyone who really do have this horrible disease.

My story started in late 2015 when I developed pain and mild cramping in my left ring finger. Then in early summer 2016 my lower left forearm began having fasiculations that bothered me as well some tightness and soreness that I thought was due to overwork from lots of pushing a lawn mower for 4 or 5 hours per week.

The discomfort and cramping in my left hand worsened. After 4 months of that not getting better I spoke to my PCP and he noticed some interosseous atrophy on my left hand (between thumb and index finger). He sent me to a neurologist for an EMG in December of 2016 and they noticed abnormalities but they immediately said it "didn't appear to be ALS" and was possibly Multifocal Motor Neuropathy. I'm still a bit foggy on how they can tell ALS from other neuropathies from EMG tests.

After another few months, I started having twitching in my legs (calves writhing/pulsating) and since early April 2017 all of my lower extremeties feel heavy and fatigued. At that time the neurologist has detected slight weakness in my left pinky and ring finger as well as the original "fanned fingers" weakness of my index finger. I have frequent fasiculations and spasms/twitches in many areas especially my arms (including biceps more recently).

In late April 2017 I had another EMG test that showed additional abnormalities compared to the previous one but they once again were thinking MMN. Blood labs are all normal or inconclusive. Negative test for Lyme disease (western blot). The plan was to treat empirically for MMN and to start IVIg but after my continued reports of pain/fatigue and some other issues I'm going to go back in for further evaluation. My most recent symptoms now include possible collapsed arches of my feet and my left pinky toe is very weak.

Seeing the sticky thread "Do I have ALS" is encouraging to me that I may not have ALS. However, this whole situation has caused me great anxiety and panic attacks. I'm going to start seeing a counselor for it this week and my neurologist asked if I should start thinking about anti-anxiety meds. I'm also seeing an ENT because I have the sensation of something in my throat and some difficulty swallowing as well as increased saliva (perhaps anxiety induced GERD) but of course I scare myself into thinking it could be another ALS sign.

My Neurologist is very knowledgeable and I trust her but I'm looking to hear what folks here think and if this in any way fits with how ALS presents. I'm wondering when it's time to seek a 2nd opinion or see an ALS specialist (if appropriate)?

Summary of symptoms:
[2016]
- cramping and fasiculations of left arm/hand
- interosseous atrophy of left hand (failed the fanned fingers test), very obvious atrophy between thumb and finger now
- upper back spasms/pain (perhaps unrelated?)

[2017]
- all of the above plus:
- Cramping of left foot (when curling and fanning toes)
- collapsed arches (didn't have that 3 years ago for sure)
- Weak left pinky toe (very little resistance when compared to my right)
- frequent fasiculations and/or twitching in both forearms, both biceps, back of right shoulder, right shoulder blade, right thumb/thenar plane.
- fatigue and soreness of lower extremeties (both legs, arms) as well as persistent muscle aches in same areas
- mild pain/aches in both hands
- fatigue and soreness of neck
- feeling of something in throat
- some difficulty swallowing
- increased saliva
- voice weakness (gets sore or worn out easily)
- Anxiety
- Panic attacks (thinking it could be ALS)

I need to get ALS out of my head but until I can find a way to rule it out (my Dr. says I don't have it, but says she can't say I won't get it) I'm probably going to keep driving myself crazy.

Any thoughts on my situation? Is there anything that makes it seem less likely to be ALS that I can tell myself as a mantra? Does MMN really fit (the Dr's are the experts, but what are your thoughts)? How about rheumaoid arthritis?

Thanks everyone - and I'm so sorry for those who really truly are dealing with this horrible disease. The fact that you're on here and helping everyone (including those who are freaking out) is commendable.

Thanks!
-Mike

 

[lgelb]

You've had two EMGs that suggest MMN and not ALS (yes, there is a difference in how those EMGs look), but rather than get treated for MMN (in which early treatment can make a difference in progression/prognosis), you want to come here and ask about ALS -- I don't get it.

You say you're driving yourself crazy -- does it not make sense that if treatment for MMN helps you that you can rule ALS out, and improve your symptoms in the bargain?

I'm not clear on why your neuro wants you to take anti-anxiety meds if you really have treatable MMN -- s/he should be helping you understand why treating MMN is a good thing. If you need to, get a second opinion on MMN but then assuming that's the provisional diagnosis, for goodness' sake, treat what you have instead of obsessing about what you evidently don't.

Best,
Laurie

 

[gr0n]

You've had two EMGs that suggest MMN and not ALS (yes, there is a difference in how those EMGs look), but rather than get treated for MMN (in which early treatment can make a difference in progression/prognosis), you want to come here and ask about ALS -- I don't get it.

You say you're driving yourself crazy -- does it not make sense that if treatment for MMN helps you that you can rule ALS out, and improve your symptoms in the bargain?

I'm not clear on why your neuro wants you to take anti-anxiety meds if you really have treatable MMN -- s/he should be helping you understand why treating MMN is a good thing. If you need to, get a second opinion on MMN but then assuming that's the provisional diagnosis, for goodness' sake, treat what you have instead of obsessing about what you evidently don't.

Best,
Laurie

Laurie - I think posting here has helped my anxiety greatly. I think this forum is a great resource for people who fear they may have ALS (like me). My anxiety is rooted in the possibility that my neurologist is wrong, and her uncertainty with my case has not been reassuring to me. Had she (like the first neurologist I'd seen) been more firm in her belief that it's not ALS I probably would not have started down this spiral. Anxiety is a beast...once it has you, it doesn't easily let go. Since last night when I posted I've felt tremendously better so I think that's a good step.

I appreciate your response - and I too agree that if I get treatment for MMN and I respond positively then it totally rules out ALS...which would completely remove any anxiety.

Thanks so much Laurie - you're doing a great service by responding to people like me in these kinds of stressful situations (as absurd as they may seem)!

-Mike

 

[gr0n]

I should mention that the EMGs were only of my arms so far. I also had two MRIs (cervical spine, brachial plexus). I may ask if we could do an EMG of my legs as well, especially since I believe I'm having weakness there now (and collapsed arches). I read somewhere here that EMGs can be done on the tongue as well? Should that be considered or do I just stick with the arms and legs for now?

Thanks,
-Mike

 

[Nikki J]

A few thoughts. As Laurie said the sooner the better for treatment if this is MMN. There was a question I had it based on blood work. My neuro wanted me to come in ASAP. As in a couple of weeks. The longer you delay if it is MMN the worse you are likely to be.

There is a good facebook group for MMN and a forum MMN dot com. I encourage you to visit them if you have not already

The more common places for EMG for bulbar are under the chin or sternocleidomastoid. But pursuing an EMG may delay IVIG. I would go for IVIG if I had the opportunity which might make you better.

 

[gr0n]

Update: The fasiculations seem to be spreading along with the corresponding muscle fatigue and soreness. I now have them in my upper arms along with my upper legs and some in my abdomen as well (infrequent). The most persistent twitching is in my calves. Most of my chest, sides, buttocks, etc., have been fine although I have had a few twitches there but very sporadic.

My muscle atrophy *may* be progressing in my left hand. I do have a bit more weakness there. I may also have some weakness in my left foot, especially the pinky toe. I still have burning/stabbing pain in my upper back around my left shoulder blade. I'm going to physical therapy now, they say my neck joints are very tight and my range of motion with my neck and arms is poor. They think that even though my MRI is "clean" that my symptoms could be explained by a problem in my neck?

I'm having a follow up EMG (3rd one) of my arms in two weeks as well an EMG of my legs for the first time.

Just want to keep this thread updated in case it's helpful for others with similar symptoms worried about ALS.

Thanks,
-Mike

 

[codyclan]

Are you being treated for MMN??

 

[gr0n]

No, not being treated for MMN yet. Once I mentioned to my neuro that I had pain associated with the areas that are twitching, cramping, and tightening, and that I was taking Advil for it, she said she "didn't want to be treating pain" with the IVIg and wants to re-evaluate. If after this next appointment they're still leaning towards MMN we're going to start IVIg.

Thanks,
-Mike

 

[Atsugi]

And that points even further away from ALS.

Just a note for people who visit this thread.