Hi...Another Person With Questions

[riaelise]

Hi there. I hope everyone here is doing ok. I am a 36 year old woman who resides in Texas. I'm posting on this forum because I was hoping to get some insight as to what I might be experiencing. I've read the stickies, and please pardon me in advance if I inadvertantly offend anyone. I know the subject matter is heavy, but I just don't know of a better place to get information than from people who have either experienced similar symptoms or who unfortunately are afflicted with ALS.

Rather suddenly several weeks ago I was trying to get out of the car and I had difficulty crossing my left leg over my right. I felt resistance, as if my leg was heavy, or moving in water. I was able to finally cross it and get out, but like I mentioned there was resistance. Resistance that wasn't there before and is not present in the other leg. I really had a hard time lifting the leg. I didn't think much of it, as weeks before I was walking around for miles at an amusement park with no issue. After that first episode, I noticed that my left leg felt slower/weaker than my right, so that there was a noticable disparity. My right is my dominant side, but there really wasn't any discernable weakness, not to that degree. Again, I felt as if I was moving in jello/water.

I am someone who doesn't shrug things off when my body tells me something's up, so I visited my GP. I attempted to cross my legs for him, and he saw that I was having a bit of trouble doing so. He had me do a number of physical exams and didn't see anything particularly amiss until he had me lie on the table and attempted to bring the left leg up. He then noticed that I had a hard time getting it off the table and it seemed like it was hovering, whereas the right leg immediately shot up. He then deduced that I had a possible neuro problem because it didn't appear skeletal. I took some x-rays and bloodwork, including SED measurements, and all came back normal. He then referred me to a neuro. I asked him what did he think I was experiencing and he said that it could be peripheral neuropathy and a battery of other ailments. I asked if there were any worse case scenarios and he mentioned als. He did say however that ALS was rather rare and in his 25 years of practice, he only encountered one case. he wrote on his pad that I had a weak quad muscle.

The week after the GP visit, I noticed something going on with my arm. Like a dull pain or something. I noticed that I was making lots of typos. My arm easily tired when holding things and overall just gets tired easily. I visited the neuro and told him of all of what I was experiencing, including the arm. He examined me, and did some applied resistance tests to each major muscle group. he had me walk around. I think he checked my neck and the inside of my mouth. He felt my forearms and asked me if I felt any sensations, and I told him no not really. After the examination he told me that he didn't see any 'red flags' but he did think I had a neuro issue, that it wasn't peripheral neuropathy since I was presenting to one side. He believed it to be a central nervous system problem. He is recommending that I get an MRI, and I am currently waiting to get that set up.

This is where the worry sets in of course, because I still have this muscle weakness and fatigue. He explained to me the difference between subjective weakness and objective weakness, and as far as objective weakness (as shown by the applied resistance tests), he doesn't see any 'red flags', but I don't know what to take from that. he can't completely rule out ALS. My weakness might be perceived, but it is real...my left side does feel noticably weaker. When I walk or run, the leg feels heavy -- like moving in water. He didn't want to do an EMG because he didn't want any false results by administering the test too early.

So right now I'm kind of in this holding pattern. I don't know what's ailing me, I don't mean to think the worst, but it's just so random and every day my body let's me know something isn't right. I don't want to go down the "twitching" road, but I did note that my toes seem to be twitching too. The twitching was after my noting of the weakness. I don't know what to make of things -- things have been narrowed down to perhaps being a CNS issue, so that means it could very well be an early sign of ALS. It's like ALS could be a possibility, so I guess that is why the neuro couldn't tell me at the initial visit "No, I don't think you have that".

I'm sorry if I am wasting people's time. I just don't know what to think. Lately I've been experiencing dull pain in the leg (my quad, in particular) that goes away as the course of the day wears on. Don't know what that's about either. I'm trying to keep positive thoughts, but I am worried just like all of the other people who post on this particular forum. Thank you again,

Ria

 

[Alyoop]

Ria, these early stages of going through the diagnostic process are emotional y difficult. We dream up all sorts of scenarios, mostly bad ones. We tend to focus on the worse of these, probably to begin to prepare ourselves for bad news. It's made even harder because diagnosing neurological issues can take weeks, months and in some cases like me years.

You need to be patient and wait for results of your tests. The MRI can shed light on things like Multiple sclerosis. The doctor was correct to look at the MRI first before you having an EMG. Shows a thoughtful doctor. You can get twitches called myokymia with all sorts of neurological conditions and fasciculations more often mean nothing at all. I twitch all over all day and do not have an illness that causes the denervation that would make them important, so they are benign.

My thoughts are with you, and I hope you get the answers you need from your doctor.
Aly

 

[SEproud]

He didn't want to do an EMG because he didn't want any false results by administering the test too early.

Ria,
I am no expert that's for sure. But I think from reading that if you have symptoms it's never to early to do an EMG. Maybe someone with more knowledge can clarify that for you and you can get definate answers sooner. Best wishes.

A

 

[brooksea]

First of all, your GP was highly irresponsible for even mentioning such a rare and devastating disease as ALS! I'm sorry he had to plant that seed in your mind! As a healthcare professional, he of all people, should know your symptoms could be from a myriad of causes!

I agree with ALY re: the MRI. They usually do the EMG and NVC last, so as to rule everything else out. It is not because they are afraid of false results.

 

[riaelise]

Aly, thank you. I completely agree. I am putting things in the neuro's hands and trying not to be too anxious. But it is hard. It's not the twitching that is worrying me, but the leg.

 

[HelenL]

Riaelise, have you ever had a neck or spinal injury that could be pressing on a nerve? Or just regular degeneration around a disk?

I agree that he shouldn't have even mentioned ALS at this stage, but it was. They can't say you don't have ALS at an early visit, until you go through all the battery of tests, the MRI being one of the first ones... EMGs are very invasive, so they usually save that for last. What was your CK level on your bloodwork? That's also a very general test they do to see if there is muscle damage.

The waiting sucks, and I've found it's better to make your day to day adjustments as needed, and just go ahead and live your life, don't wait for someone to say yes or no to this.

Good luck

 

[riaelise]

HelenL - No spinal/neck injury of any sort. Neuro is convinced, based on me having the symptoms to one side that it is a spinal cord/central nervous system issue. This all of a sudden "came out of the blue".

AR - he explained to me that the EMG isn't his first line of testing since he feels that with time, the results would be much clearer. I could be wrong, I'm sleep deprived right now, so I could be misquoting We're first doing the MRI to test for MS and other possible brain issues to see if that is the cause.

brooksea - my GP is just a straight shooter. He puts it all out there. He mentioned it as a possibility due to the fact that the problem seemed nervous rather than skeletal. We went through the initial round of blood tests and scans and they all came back normal.

Whoever said that you try and brace yourself for the worst first, is correct. Especially when I have kids. I worry even more due to having them, moreso than if it was just me alone. I want to be there for my kids. The ALS fear isn't easily subsiding because my leg every day lets me know that 'hey, this isn't all that right'. Then the tests don't point to anything and take the ALS worry off the table. The neuro after the initial exam won't definitively say "I don't think you have ALS". If he had said that, I probably wouldn't worry any longer. I did learn quite a bit from this forum, so I really do thank everyone here. By reading some of the prior posts I learned about what the definition of "weakness" is, in the clinical sense. It's my understanding that 'perceived weakness' can in fact feel like you're "weak", but it might be another issue. That's another thing - neuro issues are so vast, it's really hard to figure things out, plus they just appear out of the blue, with no real warning. My aunt was stricken with MS at 40, suddenly and without warning.

I agree that the waiting game is hard. You want to find out what is the cause of your problem, but whoever said that you shouldnt' hold your life up being scared of an ALS diagnosis or waiting for it is right. I've tried my best not to focus on my leg issue. By not focusing on it, it hasn't gone away of course, but now my attention is on other things and it is helping somewhat. I do appreciate the information I've gotten here.

Ria