Progression.

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Mike12345

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Sorry when I made my profile I couldnt find the option for Australia, I'll try and change it now.

Ill grab my EMG summary and post it also.

Sorry as well it wasn't diazepam it was dilantin they were trying me on, but hasn't helped.

I did see Katarina who is the expert here. She looked at photos of me from 3 months ago until then, and she came to the abrupt conclusion I was previously on anabolic steroids. Which 100% was not the case, and I would've had no problem in admitting to. She said it must've been in my supermarket purchased whey protein. I had always been very muscular and fit. So after me pleading for a while I threw in the towel as she was not going to change her mind. I was stunned at the treatment.

Sorry it's just Soo frustrating everything, I feel no one left to ask questions. And you are right I need to stick to one doc, but I do and then I get an answer that sounds rediculous Ie, steroid abuse.
Hence my questions here.

I know nuerology is complex.

Probs best to settle down and wait it out.

Thanks again
 

Mike12345

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*felt dilantin was slowing twitching , but was still there and past few days as bad as ever
 

Bestfriends14

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Please post the EMG with identifying info removed. Until then, continuing to ask non-ALS questions of terminally people, when you have no symptoms of ALS is not fair to the forum members. You truly are not presenting with any ALS symptoms and your FIVE EMGs attest to that.

Again, further questions are only serving to fuel your rather odd fixation on this terrible disease. Looking forward to seeing thst EMG so you can get answers and move on from this forum. For your own good.
 

Mike12345

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IMG_20200814_104917.jpg
IMG_20200814_105046.jpg
 

Mike12345

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The first one was December, second was Jan.

The BFS is under question as they have said I do have muscle changes all over.

The weakness has been found in the thumb innervated by the radial nerve, Soo unrelated to the ulnar issue they believe.

The abd hallucis (sole of foot) was giving me the biggest probs in terms of atrophy, so not sure if the fasics and Amp+ were evidence.
 

affected

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I'm an aussie - this looks classic neuropathy and of the ulnar nerve which explains the thumb issues, and as it says BFS.
Please twitch in all kinds of crazy ways all the time.
Which doctor at which hospital or clinic did these?
I'm really thinking you gotta let this go mate - regardless of your opinion of doctors your EMG's are beautiful so far as MND.
I know you get upset when you get repeatedly told that you don't have MND, but hey you sure don't display a single thing that would suggest you do. That's so good I'm cheering for you!
 

Mike12345

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affected and best friend I hear and acknowledge your comments.

Alfred and a private clinic. I suppose I'm just getting confused as my areas which are worst in terms of muscle wasting are showing clear on the NCS but funky on the EMG. The neuro who diagnosed the CFS said it's not BFS (I know they are similar), and then the steroid thing was a 3rd diagnosis.

They are acknowledging definite wasting and now weakness (But not MND pattern).

I'll let it go for now until the next test and update then.

For the most calm under pressure guy going around, this has blown me In a complete 180.

All the best and take care.
 

Mike12345

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@clearwater, I missed your question. The first one showed nothing, and the fourth I never got hold of. Upcoming will be number 5. First in 4 or so months.
 

Clearwater AL

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Mike, confusing Diazepam with Dilantin exceptional.

Dilantin is used to prevent and control seizures (also called an anticonvulsant or
antiepileptic drug). It works by reducing the spread of seizure activity in the brain.

?????

Your situation is unique but as Affected wrote above...

"I'm really thinking you gotta let this go mate - regardless of your opinion of
doctors your EMG's are beautiful so far as MND."

Please re-read Affected's reply above again.

I agree Mike, you have got to let ALS go.

I have never used this phrase until now, as others have but... "You don't belong here."

I truly hope your doctors discover a diagnosis of whatever...
 

Mike12345

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Sorry just if there is confusion,.. Dilantin is an epilepsy/ anti seizure medication, but it was specifically prescribed to me by a nuerologist for the alternative use to prevent twitching. Which it has not.

This neuro said recently I am presenting like MND but I'm simply to young.

I also was given diazepam in the past for sleeping at night hence why I said the wrong thing.

Appreciate the advice and time of all.

When you do have suspect symptoms, and it's been confirmed by docs who say we need to keep doing EMGs every few months, it just sets of a panic and you start looking for answers and start asking too many questions.

I donated almost a weeks salary at the start of this year after my first clear EMG, not trying to get thanks or praise, just saying I'm doing what little I can, I feel so sorry for all PALS and CALS.

I'll be on my way. You can close this thread.
 

lgelb

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When the neuro said the fascics were "too intense" for MND, I could see that especially in the sense that florid motion should have some relationship to clinical weakness, stiffness or other physical sign.

As for the notion that BFS/benign cramps/whatever could be affecting your muscle, I would venture a guess that you might exercise less/differently, etc., eat differently, etc. So my best advice there to stay fit is, act as if. That's very effective therapy for most people who are undiagnosed with EMGs that are not overly concerning (lack of acute denervation often a feature of such).

As for the drugs, I don't understand your question. Phenytoin is the generic name for Dilantin, et.al., an old anti-seizure drug. Diazepam is the generic for Valium. So it's incorrect to put them together.

Anyway, neither is a great drug to take long-term unless you really need it and no newer drug is safer. There are much safer drugs than benzos for sleep, and if I had bothersome cramps, I wouldn't be covering them with an old epilepsy drug. I would be ruling out anything serious and then working on non-drug solutions for managing them.

Of course, you can reduce almost any physical symptom by sedation, but that's not how people like you, who can lead active lives, should live.

I'm also skeptical of a PT talking about severe atrophy all over, how well that person has analyzed your data from baseline, and your not showing corresponding weakness. If you show us a report where a neuro discussed this, it would be of more consequence.

The EMG shows ulnar neuropathy, very common and treatable, and very, very far from ALS. You're good to go.

Best,
Laurie
 
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