Trying to get some reassurance

[Terra]

Hello there. I’m concerned for my boyfriend as he as had several concerning symptoms for a few months. It started with twitching all over including his (fingers, jaws, toes). Shortly after, his right hand started to cramp up when he would use it. The cramping seems to go away and get a little better when he uses it a lot but it always comes back. This has been going on for two months.

He did have an EMG recently and it came back normal. He really has difficulty with his hand and says it always feels tight. He hasn’t lost any strength. He did see a neurologist who conducted his EMG. He did a quick look over of his body but didn’t do a thorough exam prior to the test.

He’s now complaining of some strain in his right arm after working out. He can still do the exercises but the next day, only his right arm is sore. Typical workout pain, but it’s odd that it’s only in his right arm. He also has had some persistent twitching in that arm recently and the other arm has no twitching. It seems like his twitches are more common in certain areas than others but they are very quick and don’t last long but happen in those areas multiple times during the day.

How long before we should stop worrying about this? Does he need to get a thorough exam to rule out umnd? He used to be very hands on and I can see he struggles with some dexterity and I see his fingers stiffen up when he uses them. His PCP checked for vitamin deficiencies and did some x rays and mris. Couldn’t find anything though. Any ideas on next steps?

 

[fjay]

Please read this...

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

 

[lgelb]

I would ask for a referral to or self-refer to a hand surgeon (orthopedist with a hand specialty) to rule out a condition that might be amenable to physical therapy or some other intervention, that might not have been seen on EMG. Widespread twitching isn't generally anything to worry about, and tends to feed on itself. So the issue for me would be loss of dexterity.

I would also consider therapeutic massage, hot tub, gentle stretching, getting some professional input on his workout, etc.

 

[Terra]

Thank you so much! I appreciate the advice. He did see an orthopedic surgeon but I’m not sure if his specialty was hands. He did an x ray and referred him to neurology. It’s just so hard to get answers and not knowing is eating us up. It’s helpful to know the twitching is not a concern. I know he was mostly scared because the tension and cramping in his fingers started shortly after the twitching. Of course google says nothing good about twitching which is what took us down the rabbit hole. I told him to try and ask his doctor for an MRI to see if it potentially shows more. He also saw a physical therapist and she said there was some slight weakness in the one finger and she could feel the tension. We were mostly concerned with UMND since I know that doesn’t always show on an emg. Thank you so so much for the response though! Any little bit of information helps to ease our minds while waiting this out.

 

[Terra]

I just wanted to provide some info on what a doctor gave to me if this is helpful to you all (I hope I am ok to post this). I felt this was very thorough and explains the diagnosis process well. We are primarily concerned about early umnd onset for my boyfriends but we are keeping our fingers crossed that clinical weakness and atrophy doesn’t set in. I don’t fully understand this all myself but it sounds like this is what the doctors go by?

The Gold Coast criteria for the diagnosis of amyotrophic lateral sclerosis

Progressivemotor impairment documented by history or repeated clinical assessment, preceded by normal motor function,

AND

The presence ofupper* andlower† motor neurone dysfunction in at leastONE body region‡, with:

upper and lower motor neurone dysfunction noted in the same body region if only one region is involved,

or lower motor neurone dysfunction in at least TWO body regions,

AND

Investigations§ excluding other disease processes.

*Upper motor neurone dysfunction impliesat least oneof the following:

Increased deep tendon reflexes, including the presence of a reflex in a clinically weak and wasted muscle, or spread to adjacent muscles.

Presence of pathological reflexes, including Hoffman sign, Babinski sign, crossed adductor reflex, or snout reflex.

Increase in velocity-dependent tone (spasticity).

Slowed, poorly coordinated voluntary movement, not attributable to weakness of lower motor neurone origin or Parkinsonian features.

†Lower motor neurone dysfunction in a given muscle requireseither:

Clinical examination evidence of muscle weakness and muscle wasting, or

EMG abnormalities that must include both:

Evidence of chronic neurogenic change, defined by large motor unit potentials of increased duration and/or increased amplitude (with polyphasia), and motor unit instability regarded as supportive but not obligatory evidence, and

Evidence of ongoing denervation, including fibrillation potentials or positive sharp waves, or fasciculation potentials.

‡Body regions are defined as bulbar, cervical, thoracic and lumbosacral. To be classified as an involved region with respect to lower motor neurone involvement, there must be abnormalities in TWO limb muscles innervated by different roots and nerves, or ONE bulbar muscle, or ONE thoracic muscle, either by clinical examination or by electromyography (EMG).

§The appropriate investigations depend on the clinical presentation, and test results

 

[Nikki J]

Yes gold coast are the most recent criteria. They are meant to be less confusing than the previous criteria. El Escorial criteria are still used for trial inclusion most of the time. The differences are not large but Gold Coast eliminated the staging Possible probable and definite ALS by El Escorial were all ALS but people understandably thought possible and probable meant doubt.

All the criteria have the main points in common - you need a specific constellation of findings on emg and significant umn findings on exam and THEN and only then comes the elimination of other causes. Some people hear it is a diagnosis of elimination but don’t realize one needs clinical and emg findings first

it is also important to emphasis the emg findings noted need to be assessed in totality and having a few or even all if they are not in the right pattern is not an ALS emg so those people haven’t even reached the elimination phase. Having fibs or large mups for example is quite common and not ALS without a lot of other things

 

[Terra]

Thanks for clarifying. I just have one more question. What is considered a thorough neuro exam of the hands? He thinks he has spasticity since his fingers will get tense and clench together at times. Just so I’m clear, an actual physical exam plus an EMG would rule out ALS correct? He has had this tension for two months. The good news is, it’s not getting worse, but the bad news is, it hasn’t gotten better. The physical therapist did acknowledge the tension and said his index finger was slightly weak and shaky. She saw the cramping and stiffness when he moved them. The Neuro just examined his hands without doing any testing on them (I assume looking for atrophy). He can still button a shirt and do all the normal things but just said his fingers have lost some coordination and are always tight. I’ve seen photos where people with ALS will have there fingers pull together side to side and it looks very similar to his when they are at rest. Thank you again so much. It’s so encouraging having a group like this to support each other. You are all an inspiration.

 

[Nikki J]

A diagnosis of ALS needs the emg and clinical exam. Normal exam plus normal emg mean no mnd at all.

i expect the doctor not only looked for atrophy but observed how he used it and held it during the visit. If he held them he probably assessed tone ( spasticity). There are strength exams that are often done stop traffic command is often done and resistance testing. Isolated finger weakness can have a million more benign causes

 

[lgelb]

As mentioned above, the neuro view of his hands is not the only possible view. The EMG shows that he doesn't have nerve damage and that the nerves are still controlling the muscles as they should. So that gets to the realm of possible muscle, tendon, and/or ligament damage. Accordingly, I would see an orthopedic surgeon who is a hand specialist.

 

[Terra]

Thank you both so much. The work you do here is beyond incredible. Unfortunately my boyfriend is now experiencing the same issue in his right hand. We are about two months out from the initial onset in his left hand. He’s always been so strong and to see him struggle like this is awful. Trying to keep my hopes high and praying for him daily but more and more things keep piling up against his favor. I’ll be sure to keep you all in my prayers as well.

 

[ShiftKicker]

Hi Terra-

Unfortunately there's really not much more the people on this forum can do for you at this time, as we are not able to provide you with what you require, which is information about what is causing your boyfriend's symptoms. We really can't provide actionable diagnostic info or medical care here, nor does what we have provided you here in the way of reassurance seem to be working. It is up to your boyfriend to return to the doctor if there are any changes so they can be assessed and noted. The people here, multiple doctors and a clear EMG exam all reinforces that what you have written is not how ALS starts, so an ALS forum might not be the best place to keep looking for insight.

We really do wish your boyfriend all the best, and hope he will be able to continue to work with his doctors to track down the cause of his issues.

Please take care

 

[Terra]

Hope this can help some of you all. My boyfriend was able to see the ALS neuromuscular specialist of Pittsburgh today (Dr. Rana). **it really does help being nice to the scheduling people and set up call list reminders for earlier appointments** He was put on the call list last week and got in today after what would have otherwise been several months.

Anyway, the doctor conducted a physical exam and told him to put ALS to bed and not worry about it. He believes it may be a fibromyalgia and he was also diagnosed recently with venous insufficiency. I’m thinking that may be causing some of the cramping in the hands. Either way, we feel so much better after the physical exam. We have another emg scheduled that was already in the works by another doctor. I’m not sure if we even need it though? He has a follow up with the same neurologist in 3 months which I’m guessing is just routine and nothing to think into too much.

Thank you all again so much for your support. Praying for all of you and wishing you all the best!

 

[Terra]

I’m so sorry to be back here, but I had a question about our new EMG results. This one was done by a different doctor and when he inserted the needle, there was noise right away. The other emgs he had done were quiet and showed a straight line on the screen when the muscles were at rest. This one was a non stop buzzing / crackling sound as soon as the needle was inserted and a bunch of small squiggle marks showed up on the screen that were close together. Does that mean he has electrical activity in the muscle? The doctor has yet to provide results.

 

[Nikki J]

No . wait for results. Emgs are often noisy and squiggly. That is usually just “noise”. I don’t know exactly what you saw but I would not describe the spontaneous activity on my emgs ( multiple for research) that way they were pretty organized and rhythmic

Until you have the report ( should be on the portal very soon after the test) do not start guessing

 

[Terra]

We did get the results back and it appears a fasciculation was found when doing the test. It just happens to be in the hand he is losing some grip strength in. Any insights on these results would be helpful. He said he didn’t feel the fasciculation happen. He’s been experiencing twitching for about 3 months in total. His EMGs prior to this were clean and concerned the disease has progressed to the point where it’s starting to be EMG positive.