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AlS or some other MND?

IssuesInOhio

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Hey Everyone. I will try to make this brief and to the point. I thank everyone in advance for your responses.

I want to preface this by stating I have read the sticky at the top and I have read a lot of the posts.

Here is my situation:

In 2008 I had issues of muscle pain, muscle loss, and cramps and fasics. I was terrified when I looked up what it could be.

It was progressive but it was also not muscle atrophy as much as global wasting. Doctors suspected something was wrong and long story short I ended up at a neuromusclular specialist. Had a total of 4 EMG's done in about 15 months, all came back clear for ALS.

Had a muscle biopsy done. Came back clean.

I was diagnosed with fibromyalgia and BFS in 2010. Since 2010, I have had periods where I am back to 90% and brief periods of flare ups where my muscles hurt, get myalgia, and the twitching never goes away for 10 years.

I know that history does not show ALS, but I though it was important to note that I have been through the process of ruling out ALS. I didn't include some of the details that in the early stages that led them to test me for ALS since its not really relevant.


Fast forward to January of this year. I started to have some new issues.

My right hip started to hurt and I started to notice some muscle loss. Then my right calf started to really hurt and I started to notice muscle atrophy with cramps and twitches. Then within a week my left calf has some cramping along with my right tricep and my right chest muscle. I have cramping and fasics and they are brutal and are non stop day and night all over, even in my face and head.

My right calf was the first thing to really start with these issues and it has progressed. When I walk a typical amount, it gets sore and burns and cramps. My left glut and my right hip are bad as well.

I honestly don't see how I could have ALS because that would mean that I didn't have in in 2010 when I had weird symptoms and 4 clean EMG's and then was unlucky enough to be one of the 500 people in my 40-45 age group to get diagnosed each year and coincedentially was tested and cleared of it 10 years ago? That would seem just astonomically unlikely but my symptoms are scaring me.

Here are my questions:

-Has anyone ever heard of someone having BFS that turned into ALS or PLS?
-Does BFS or Fibro lead to a higher chance of getting ALS?
-Does the weakness come on gradually as burning and painful cramping as the muscle gets worse or is it that one day you just cant use that finger or foot or calf?
-Does it start in one spot and spread out from there or can it be more just hit a bunch of spots all within 3-4 months?
-Is there any type of MND that anyone has seen that you can have for 10 years without steady progression where it waxes and wanes and then it can just change one day to go down hill quickly.

I have a neurologist appt set up for June 3rd and my GP says my calf does look like atrophy. Has anyone ever see someone on these boards get tested for ALS and cleared then 10 years later has it??
 

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KarenNWendyn

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Hi there. You’re correct that from 2008-10, ALS was ruled out by the clean EMGs and waxing and waning symptoms.

Then you describe pain in right hip and a rapid onset of cramping in multiple areas.
You have not described muscle function failure, which would be the hallmark of ALS.

You say, “I honestly don't see how I could have ALS”. You’re right! I don’t see how you could have ALS either.

To answer your questions:

-Has anyone ever heard of someone having BFS that turned into ALS or PLS?
Once in a blue moon twitching can be the first sign of ALS. But EMG will be abnormal in ALS even if twitching is the initial symptom. EMG is normal with BFS (except for fasciculations). So true BFS does not turn into ALS.

-Does BFS or Fibro lead to a higher chance of getting ALS?
No

-Does the weakness come on gradually as burning and painful cramping as the muscle gets worse or is it that one day you just cant use that finger or foot or calf?
One day you notice you can’t use something normally.

-Does it start in one spot and spread out from there?
Generally yes

-Is there any type of MND that anyone has seen that you can have for 10 years without steady progression where it waxes and wanes and then it can just change one day to go down hill quickly.
No. Motor neuron diseases don’t wax and wane.

Has anyone ever see someone on these boards get tested for ALS and cleared then 10 years later has it??
No.

And I can’t tell anything from the photo.

I’m glad you’re seeing the neurologist. I’m sure that visit will clear you once and for all.
 

Bestfriends14

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Your calf looks really muscular; much different than an atrophied calf muscle would look. When there is atrophy, that means the muscle has wasted. You would definitely not get definition like you have. My husband wishes he has calves that look like yours. Unfortunately, because of his atrophy, his calves are skin and bone with no definition whatsoever.
 

IssuesInOhio

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Hi Karen- Thank you for responding and addressing each question in so much detail, much appreciated.

Although I don't have muscle failure, I do have muscles that are atrophy per my GP. Its mostly in my right leg currently, calf and quad, but also in my right and left hip.

I am just wondering if the pain and soreness is the beginning of muscle failure. As in the muscles strength is reduced so the muscles can are struggling to do what they did and they get sore and burn as a result of being weaker but not at failure point? This is for sure progressive at this point.

It seems to get worse daily in terms of muscle loss and its not showing any signs of stopping. That is why I was asking if anyone noticed the atrophy before the had muscle failure and if pain or soreness was accompanied in the early stages of muscle getting weak?

I have experienced cramps and pain in my calf since February and now there is atrophy (per my GP). Along with the cramps and fasics. The inside quad muscle on the same side started giving me issues in Feb and now it also has drastically reduced in size and looks like atrophy?

Now I am getting that same tightness and soreness in my right tricep and right pectoral muscle. That is why I was asking if it spreads globally or something more like jumping to the closest muscle (Calf to quad to foot)

My GP stated that ALS is unlikely but only due to the fact that I had an extensive work up in 2009/2010. But it could be possible in theory to not have it then and then end of having it a decade later, like I said though that would be a strange coincidence.
 

IssuesInOhio

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Thank you for your reply, I'm sorry about your husband. I can not imagine. Did your husband have any pain or soreness when he first started having the muscle wasting or was it mostly unnoticed until it was really bad? My GP told my it looks like I have some atrophy in the center there, which is why he wants me to go back to a neuro, its like a part of the muscle just disappeared and that spot is very painful with cramps, tightness, soreness. I also have some of the same in my quad.
 

lgelb

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The death of nerves that control muscles that occurs in ALS is not painful. Once mobility is lost, there are several reasons for pain. ALS does not affect sensory nerves that carry "pain signals."

The sequence of events you are asking about -- muscles in pain because they are trying to do more -- doesn't happen.

I don't see any reason to worry about ALS in your case.

Best,
Laurie
 

Bestfriends14

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No, I'm not going to reply about how my husband felt as he lost his leg strength. The reason I'm not going to answer is because I refuse to feed into your chasing ALS. Multiple EMGs, an MRI and going to doctors since 2008? You don't have ALS and that's a good thing. Be grateful instead of searching for how you can get diagnosed with this dreadful disease.

Best of luck to you in your life. Take good care
 

KimT

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There is a condition called cramp fasciculation syndrome. It presents like you describe. There is a lot of pain with it but no muscle failure. I'm sure you also know that fibromyalgia can give you extremely bad pain, among other symptoms.

There are different meds used for cramp fasciculation syndrome and fibro.

My best guess is that you have both of these conditions.

Karen did an excellent job at answering your questions. Any further questions should be directed to your doctor.

Work with your doctor and be open to treatment.
 

IssuesInOhio

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Hi Kim, thank you for the response. I was diagnosed with fibromyalgia and BFS back in 2010. Yes, fibromyalgia flares cause pain in hot spots.


My concern is that maybe in 2010 the diagnosis was totally correct and what’s going on with me now is totally non related to my former diagnosis and could be MND. The reason I say that is because previously I didn’t have marked atrophy and now I do and that is something new.

I was wondering, I have an appointment tomorrow and I’m guessing they will check my reflexes. Does babinski sign and Hoffman’s sign show up in initial MND presentation?
 

KarenNWendyn

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You’re seeing a neurologist tomorrow. We have answered many questions for you and tried to reassure you. The fact you continue to ask many of the same questions shows your anxiety. Remember that this is not an anxiety forum and you are asking people with ALS and their caregivers to massage your neuroses.

I would ask you not to post further until after your neuro appointment. Thank you.
 

IssuesInOhio

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On Monday I saw a spine and back specialist, not neurologist. He did a full work up. Check out sheet noted "atrophy in right leg" and "perceived weakness" among other notes. He checked my reflexes and they were normal including the Babinski, not sure if that really holds a lot of weight though. Would reflexes show anything in early stages at this point?

This issue with me seems to be progressing at a fast pace. My mid and upper back muscles are now cramping and feeling weak and my legs continue to lose muscle and become more sore from normal use, right calf is the worst but left tricep and right hip are also bothersome. It is bad especially in my right quad and calf but the left is catching up to the right. If this does happen to be ALS, this would be a very fast progression if it continues at this pace. Only 6 weeks ago I had some cramping in my calf but otherwise was running around and lifting stuff and feeling pretty good physically.

I don't know what to think, I'm very scared and worried regarding ALS. I know everyone on here says I shouldn't be, but I read stories on here and other places where the first thing people notice is perceived weakness (not clinical), cramps, burning, and the twitching in a hip or leg and then it progresses to full failure later down the road. I do have anxiety about this, but I wish I didn't, but I do.

I have an MRI on my back coming up that was ordered by the spine specialist to see if this is a budging disk in my lumbar back but the problem I have with that is that I have issues that are upper and mid body to so the MRI is just a formality that I have to go through and I have a neurologist appointment on Tuesday. I'll post again after that if there is anything significant that comes out of that and I have questions. Thank you.
 

codyclan

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Perceived weakness is not an early sign of ALS. You do not have muscle failure, so you are not presenting with ALS symptoms. Wait until you see the neuro on Tuesday. In the meantime, you should log off this site, stop googling and searching for ALS symptoms that you think you fit into and live your life. Post an update after the neuro visit.
Tracy
 

IssuesInOhio

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Providing an update. Went to neurologist. He stated that although I had an extensive workup 10 years ago, that this could be something different and non related, which is what I have been concerned about.

He also stated that ALS can sometimes go into remission for long periods of time and even improve and then come back, which I wasn't aware of. I told him that I had 3 EMG's 10 years ago though and he responded that it would have been picked up then 10 years ago so I certainly didn't have it then, which I agree.

My reflexes were normal.
He saw the muscle twitching
He didn't do any strength tests although in the last 2 weeks I can feel my muscles in my back, and back of my arms as well as legs getting weaker. They are not failing, but certainly weaker. I told him that some of my muscles feel weaker.

I asked him if it could be MND and his response was that I am in the age range and that sometimes clinically these things cant be picked up but an NCS with EMG would tell us if it is. He then ordered an EMG and it states on the EMG order to "test BLE and left arm for possible MND."

Not the reassurance i was looking for. We will see how the EMG comes back.
 

KarenNWendyn

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He also stated that ALS can sometimes go into remission for long periods of time and even improve and then come back
Really? That’s news to me. I’ve always been taught that ALS is relentlessly progressive. Laurie or Nikki?

Was this neurologist a neuromuscular specialist?
Also, what kind of neurologist would not do strength tests?

We’ll see what the EMG shows. I’m betting it will reassure you.
 

ShiftKicker

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I'd like to jump in here and state I have never heard of ALS going into remission. This is something your neuro needs to clarify with you, complete with literature to back it up, as that is not how it is understood the disease progresses.
 
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