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rockyman01

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Previous thread: Terrified Bulbar or Limb Onset? Varying Symptoms

Sorry for posting again, but I've been having daily crying spells. I've tried to stay off the internet researching my symptoms, since the last time I posted my "Central Sleep Apnea" has seem to resolve after a few rounds of sleeping pills.

Recently (couple days ago) , I've started to get occasional twitching in the neck muscles I was having issues with and random neck jerks (myoclonus?). My left leg that I suspected atrophy is getting weaker and also twitching occasionally as well as the rest of my body. When I walk for about 20 - 30 minutes, it starts to get increasingly difficult to use that leg, the knee seem to fatigue and tighten up.

I've seen a second neuro who is a clinical professor at a prestigious university here in Canada who did another EMG 2 weeks ago, on the left side of my body that wasn't tested previously upto my shoulders, which includes the leg I'm having issues with now I asked the neuro to test the neck muscles or bulbar and he said it didn't matter, I don't know why they don't want to check it. He didn't seem concerned about my neck and shoulder symptoms and throat tightness.

Clinical exam was fine and through out the EMG he said everything looks good. He told my PCP "No evidence of MND at this time most likely BFS". Should I get a copy of the EMG report? I've had a brain and cervical spine MRI also and they came out normal.

Timeline of events

July 2018 - Body-wide twitching
Nov 2018 - Noticed possible left leg calf atrophy (neuro deny's otherwise)
Dec 2018 - Throat tightness
Jan 2018 - Neck and shoulder tightness and dull burning ache
Feb 2018 - Neck jerks and Left-leg knee fatigue affecting walking.

Nothing has failed to work yet.

How does leg and neck weakness present with ALS is it only clinical weakness ? Doesn't it start with perceived and transition into something clinical.

Thanks in advance
 

Clearwater AL

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Rocky, as you wrote...

"Clinical exam was fine and through out the EMG he said everything looks good. He told my PCP "No evidence of MND at this time most likely BFS."

You couldn't hope for better news than that.

Yes, ask for a report of your EMG. Last page... summary/conclusion. Trust it.
 

Bestfriends14

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Rocky,

You wrote this in your last thread: As per your neuro- "He said he didn't think so and asked if I have any muscle failure / weakness (can't hold my head up, can't lift my leg, can't lift cup, choking, etc); I said no, he then said I don't have ALS or symptoms of it, he also said my symptoms are all over the place which is not how ALS works, he said 99% of the people coming to him scared about ALS don't have it. Said my calf isn't atrophied, and that's not ALS atrophy looks like. He then proceeded with strength, reflex tests (normal) and NCS & EMG (I didn't know it was that painful). He said my CK level is normal since I'm AA and most scale cut off is for white males.

NCS came back abnormal (CTS in both hands), EMG was clean. He said it's BFS, prescribed me Flexeril and referred be to a Psychiatrist."

What happened with the psychiatrist? It seems that, with your level of health anxiety, your time would be wisely spent ther; not inquiring about non-ALS symptoms on a forum for those who are terminally ill.
 

lgelb

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"Nothing has failed to work yet" despite what you describe as over a year of symptoms. You've had two clean EMGs. Your neuro(s) "deny" atrophy that you think you see...think about that. What would lead you to perceive it when they don't?

Can you see that we see you as trying to talk your way into having ALS? Everyone's bodies are imperfect, with tightness, aches, twitches, differences between right and left.

To answer your question, no, ALS leg and neck weakness doesn't start with perceptions and transition into reality. It starts with impaired movement, where the rubber hits the road.

No one whose postings you've seen here fits that description. You do not have ALS -- which is very fortunate. Please get help for your obsession before it destroys your life.

Best,
Laurie
 

grounded

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I never had perceived weakness. My first symptom was tripping in stairs. I felt perfectly normal & thought I just needed to be more careful on stairs. This was in April 2011 & very early in my relatively slow progressing ALS. I can still walk short distances using a rollator, 8 years later.

After I soon developed left drop foot & was unable to hold my left fingers together (with open palm), my PCP referred me to a local neurologist (summer of 2011). He asked me to stand on my heals. I couldn't. That surprised me because didn't feel weak. He did do an EMG - didn't give me a diagnosis but referred me to an ALS specialist for further evaluation.

I was referred to an ALS center/University medical center. When that neurologist did the exam, he said "weak" for practically all muscles he tested. I was surprised because I didn't feel that I had any weakness except for left hand & foot. Also, I didn't notice any atrophy at this time, except a bit in my left shin. He did another EMG, found widespread abnormalities & diagnosed ALS.

So, in my experience, "feeling weakness" is a mental/anxiety thing & not ALS. When you can't do something and/or an experienced Dr notes clinical weakness, then MAYBE you have ALS.

To this day, I don't feel weak or have any sensory symptoms. So, my advice would be to ignore any feelings of anything if you are suspecting ALS. Look for the inability to do things. Believe me, if you have ALS, you will have muscle function issues. I think, without this, you would not get an ALS diagnosis.
 

rockyman01

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Thanks everyone for taking the time out of your day to respond. I'd take your advice into consideration and find a way to deal with my anxiety and watch how things progress.

Thanks a bunch.
 

Lorenzaboon4

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Stay blessed-- you don't want ALS. I wish it will just go away but it's not-- such a horrible disease!
 
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rockyman01

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Sorry for posting so soon and bothering people again, today my throat tightness has gotten extremely bad. The left side of my throat is extremely tight/stiff, it seems like the muscle doesn't want to move at all even when I swallow my saliva. Can stress & anxiety cause something of this severity ? I've been trying to stay positive for the past few weeks now this happens. Left leg feels like I'm walking with a bag of sand attached to it, I've also developed tightness there.
 

Clearwater AL

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Rocky, please read the last reply by Shiftkicker, a forum moderator and a very
knowledgeable member, just below your thread titled "Worried About Symptoms."

It was posted today at 9:50 PM.

Again, scroll down to the last reply of that thread and read Shiftlickers reply.
 

Bestfriends14

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Rocky,

Please do not ask any more of your non-ALS questions...please. What is going on with the psychiatrist that the neuro said you should see because of your health anxiety and fixation on this disease? If a neurologist said you should seek psychiatric help, perhaps you should take his advice, no? No one here can help you further.

I sincerely wish you all the best in your future. I also wish that you find a way to appreciate the life you have and be grateful that you do not have this terrible disease. I hope you can manage to do that..
 

rockyman01

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I'm so sorry for messaging again, I know I've been told not to message again and I feel bad constantly bothering people suffering a terminal illness but my symptoms are really worrying, it's Sunday here and I have no where to turn too.. I just woke up and the fingers in my left hand were curled up extremely stiff. I had to wait a few minutes before I could control & extend them on my own again. This feeling is different than when I sleep on my arm, usually the whole hand is clumsy and wobbly. Majority of my issues are happening on the left side.

Isn't this spasticity? if this was caused by UMN issue would it have gone away on it's own temporarily like this after a few minutes (2-3 minutes) when I woke up ?
 

Clearwater AL

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Rocky, you have avoided a question you have been asked...

What is going on with the psychiatrist ?
 

Bestfriends14

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I assume you are avoiding answering the question as to where you are at receiving psychiatric help. Since it appears you are doing nothing to help yourself and your mental health issues, that is doubly inappropriate to be looking for emotional hand holding from terminally ill people. Not only is it not appropriate, it is very self-absorbed. Step outside of yourself for a moment and think about the group you are, for a lack of a better word, whining to. You have your health, a long life ahead of you and you are whining to be helped by dying people and their caregivers. That doesn't sound too cool does it?

So, please, stop.
 

rockyman01

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Rocky, you have avoided a question you have been asked...

What is going on with the psychiatrist ?
Sorry if it feels like I'm trying to avoid the question I just don't just want to labelled as more crazy here and my symptoms ignored. The truth is, I did see the psychiatrist, he tried to put me on Sequorel, he said it would help with my sleep; but when I researched the medication, it is used to treat psychotic disorders and the side effects can be really bad when there are better sleeping aids so I stopped seeing him.

He probably thinks I'm crazy or something after reading both neuro's report one who said I av Somatoform Disorder and the other said BFS & Anxiety, he didn't even bother asking the classic are you crazy questions. Just said here take this for your sleep. I've asked my PCP to refer me to another psychiatrist whom I'll be seeing next month.

But I don't understand how anxiety can cause my fingers to curl and lock up something is not right.
 

ShiftKicker

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Rockyman, this forum is not in a position to help you right now. The members here do not see any sort of symptom linking to ALS. I refer you back to the "Read Before Posting" thread- paying special attention to the last part about what to do when people here say they don't see ALS. Continuing to try to convince and argue nets you zero actual answers or care.

This is a group of people who are either caring for a person with ALS or who are diagnosed with ALS themselves. They come to this forum to get support themselves. This is not a place for those who will not be diagnosed with ALS. It is inappropriate to expect people here to continue answering your questions and providing emotional support to a person who can not believe their doctors or the people here.

I am closing this thread, as it has run on long enough. Please seek appropriate in-person medical care. This forum can not provide what you need at this time. Please do not start another thread.
 
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