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Razor

New member
Joined
Sep 1, 2014
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Other
Diagnosis
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Country
US
State
NY
City
Sydney
Hi All,

I'd like to start by saying I have the highest respect for PALS and CALS living with ALS. Before posting I have reviewed alot of the previous posts and sticky's to answer my own questions, however the time has come where I need personal advice as my situation is unique and scary.

Any thoughts on my situation would be greatly appreciated.

I am 35, male married with 2 young children living in Sydney Australia.

My Story starts 10 months ago in February 2014.

Within 3 days I noticed the onset of the following symptoms:

- Dizziness & motion sickness
- Poor Balance
- Unable to clearly state words, not slurred just occasionally not coming out right like I would say thud instead of thumb etc
- Body wide twitching
- Visual issues (floaters, shimmering)
- Brain fog, forgetting peoples names etc.

All of the above symptoms besides the twitching lasted 3 months.

Seen a doctor for routine blood work, several levels were off including CRP and SED. The Local doctor believed I was hit with a virus and things would settle.

March:
- Muscle pain in both thighs more the right, joint pain in both knees more the right and right elbow. Right tricep is ceased and to this day doesn't flex properly. No atrophy is present but plenty of twitches and cramps straight away on flex. Internet research (well you know how that goes) left me thinking I have MS. I had an MRI which come back clear. I seen a Neuro 30 years experience, who completed a clinical exam and said he didn't see any areas for concern.
- Blood levels started to come back to normal levels, the pain subsided in my thighs and knees however was left with the slightest feeling of weakness (perceived) mostly in legs. Pain/cramps remain in my right tricept and right elbow which has remained that way and often is red. Local doctor is saying post viral syndrome give it time. Some days feel better then others.... I also have feelings of loss of sensation across the back of my hands, pins and needles rarely on the soles of my feet and burning in my forearms.

April:
- Weakness continues and my arms and every other muscle is now affected, I can muster strength when required however a tremor is noticed when I flex any muscles. Feels like effort to raise eyebrows, shrug shoulders, span fingers.... feels weak and tremorish. when I smile for 10 seconds cheek tremors, lift head off pillow, neck tremors etc. its becoming more difficult to walk. hands and feet feel alittle uncoordinated and awkward.
Went back to same Neuro as I believe he is very experienced, he acknowledges the increase in tremor however doesn't believe there are any significant issues neurologically. he said some people have theses symptoms then they clear up.... Passed the clinical very easily. he suggests seeing a Rhumy.

May:
- Weakness progress' mostly in right leg but all over.
- I start to feel muscle fibrillation in my right calf. Not much information on felling fibrillation but I believe that's what it is. One week Later I started feeling fibrillation in my left calf. Intermittent and happens only once or twice a day on rest.
- Right elbow is red.

June/July:
- Weakness progress', Calves have become stiff, certain muscles cramp on use at times. Rhumy sends me for EMG and Evoked potential studies to rule out ALS and MS.
- EMG and clinical is clean by respected clinic and Dr, SSEP was completed in local hospital and was not normal in right leg however they said the machine malfunctioned. due to waiting test length and MS being cleared from MRI the test is not completed again. I mention intermittent Fibrillation and he was unable to detect in calf. detected only twitches in calf, Dr says I have BFS.
Rhumy says I have Fibro even thou I do not have any tender points.

August:
- Weakness progress', fibrillation now felt in both legs, calves front and back, both arms and forearms, chest and back.

Current JAN:
- Legs have remained the same perceived weakness for a few months, stiffness comes and goes daily.... sometimes left, right or both. I did get a cramp one week ago in my right calf which has remained.... feels like a knife thru my muscle every step I walk.
- Fibrillation continues each night intermittently in all leg muscles. still can only walk 5 minutes.
- Hands have Progressive perceived weakness which I believe is turning into clinical weakness especially right hand pinky which is shaky and uncoordinated on individual use, however left hand is also affected. Dexterity getting worse especially in right hand.... Hard to type, write etc but can still do it if I have to.
- Fibrillation continues each night intermittently in arm muscles.
- Lost alot of muscle bulk from around my body, especially around elbows, ankles etc...
- I cant say 100% I've noticed atrophy however I have noticed dips appear in my hands around the thumb tendon when I flex my hand. Nothing is noticed when my hand is relaxed.
- I continue to get intermittent bouts of loss of sensation, pins and needles and burning on forearms, hands and feet. Sometimes it feels like my hands are weaker when this sensation is present.

I used to have good days and bad days, now its just worse days!

I haven't booked any further appointments as I have tried to stay positive with things like "perceived weakness" "clean EMG" "sensory issues" The cramps, stiffness, worsening of symptoms and fibrillation are really bringing me down and its become a major struggle to be at work or around people. especially when I feel new or worsening symptoms.

Any opinions would be greatly appreciated.
 
I think your title is highly misleading there is zero evidence that " bfs and anxiety is ALS" here.
What do you mean feeling fibrillations? The fibs on EMG are not something we feel. Do you mean fasciculation?
As far as I can tell it has been 6 months since the neuro? Go back and get checked but your symptoms sound pretty diffuse. ALS pretty much starts in one area and by the time you have symptoms in all extremities the diagnosis was unmistakeable for quite a while. A lot of this does sound like fibro but your physician will tell you what the problem is or is not
 
Razor, you have written a 973 word, apparent diary (referred months appear to be written in present tense), which would strongly indicate obsessive self concern and hypochondria.

You claim you read the Stickies but now re-read them with the same focus you dedicated to posting this rambling essay on yourself.
 
Hi Nikki and Clearwater,

Thank you for your replies. I apologise for the ramble I wanted to give all the details.

I told myself I would never post unless I was actually diagnosed but this morning was tough with my symptoms which can no longer be ignored. I will try to simplify my questions rather then bable.

My concerns:

- Progressive weakness from preceived to clinical
- Loss of dexterity
- Fibrillations
- Cramps
- Stiff calves
- Atrophy in hands

My Questions:

Has anyone heard of ALS presenting in a fashion similar to mine as described above?
Can you feel fibrillations?

I believe I can feel fibrillations… they are different to fascis as they are very minor, rhythmic and last for 10 seconds with perfect intervals…. It feels like a very slight flutter or rhythmic quiver of the specific muscle that you have to really feel for on rest.


P.S sorry Nikki for the misconception the title was saying I’ve always been told its BFS, FML or anxiety and my symptoms may be suggesting something else as each month I’m getting worse.
 
I call those little twitches ( fasciculations). I have big twitches little twitches and in between twitches. . Fibrillations arise from a single muscle fibre you can't feel a single muscle fibre. It is something that is found on an EMG not something that is felt. I have or had fibrillations too but I only know that from my EMG and I felt nothing at the time.
I still say your symptoms don't seem like ALS and you should see your physician
 
Thanks Nikki
 
Being you haven't booked any further appointments... why not? You seem to be overwhelmed with symptoms that have you equally frightened. Yet, you bring your fret to a Forum with such detail and description which indicates you're not dumb. So don't be.
You'd better book an appointment soon... and being willing to accept a probable diagnosis of progressive debilitating anxiety or possible fibromyalgia as Nikki noted.
 
Thanks AL,

I made a promise to my family that I would stop investigating the issue after the EMG, Im just trying to keep my word. I wasnt going to post however my symptoms have really progressed the last month..... this morning was breaking point where i was convinced I have ALS.

Although I know my symptoms didnt start off looking like ALS, thats where they seem to be heading.

I havent gone back to the Doctors because they couldnt find anything else (blood wise) and I keep telling myself a clean EMG and non-ALS onset are enough.

I guess the only real question I had was about fibs....

Appriciate your time and effort in replying, wish you all the best Sir.
 
Honest mate, there are 2 main things that jump out at me.

1. You keep using the word 'feel', yet you claim it is clinical weakness, but you haven't seen an MND specialist neuro, so it is feeling still.

2. YOU are convinced you have MND (since you are an aussie like me I'll use our term which means ALS). You have not presented MND symptoms.

I would suggest that you need to get a referral to an MND clinic in a Sydney hospital so that you are seen by a neurologist that specialises in MND. Most neurologists do not.

Then I would suggest that whatever they tell you after an examination, you believe and go forward to finding out what is actually happening.

I wish you the best. You are going to do yourself a huge favour if you stay away from here in the meantime and get medical advice from specialists. I do understand that what is happening to you is very scary. Please understand that you have so far (until me) been answered by people who are actually battling the reality of this disease, and it takes great effort for them to do so. Print out the essay you wrote us and take it with you to the MND clinic, it's a good clear history.
 
Tillie,

Thank you for your reply.... I am greatful for the advice, as I said I didn't want to post until I had no other options. The first Neuro I seen wouldn't send me for an EMG because I was under 40 and showed no signs of real weakness or atrophy at 4 months. The ryhmy sent me for one cause I said the magic word twitch. She later told me she has never had a patient with MND but sends all her fibro patients for one to rule anything else out. I put my name on a 7 month waiting list with Sydney Hospitals.... I performed my SSEP at liverpool hospital and the machine malfunctioned on my legs. I couldn't help but lose confidence in the operator and equipement. I tried to book with the leading MND specialist in Sydney who refused to see me without the recommendation from a nuero. At 5 1/2 months I settled for a private new clinic at Maquarie. The EMG was performed by a knowledgable Neuro who works EMG's. There were a lot of questions and activities before the EMG started. I personally watched him stick the needle into every single perceived weak muscle and it was dead silent each time. I got him to search around my calves for a fib I was feeling the night before..... I want to accept and believe my diagnoses of fibro and BFS however each month I'm worse. I don't know what else to do.... I thought I'd use my last chance asking people who live with ALS. I am greaful for each reply I recieve..... At 10 months there is no where else to go as I would still possibly pass a clinical.... And EMG 4.5 months ago was clean.
 
OK I understand and thanks for clarifying where you have been etc as that means little to most here as they are in the US.

I think you need to get back to your GP and explain your highly stressed condition and ask for help with anxiety. Your GP can do a mental health care plan for you which will give you 6 counselling sessions that can be bulk billed.

Sadly 'twitch' is not really a magic word, heaps of people twitch and this doesn't mean squat as a diagnostic symptom.

I would like to suggest that after 10 months you have shown no real progression in terms of having a terminal disease. Yes MND presents and progresses differently in people, but after 10 months one would expect something that can be clinically measured. The EMG will pick up what is going on even before you see clinical weakness or atrophy so even though it was a while back it is still valid.

I would be way more comfortable at Maquarie than Liverpool too. Have you considered joining a BFS forum? I don't know a lot about it but I believe BFS can become quite debilitating because the constant twitching is fatiguing the muscles and this causes an ongoing and progressive 'feeling' of weakness, but as you report you can rise above it and do things 'if you have to'. It tends to disrupt sleep causing more fatigue and then the worry on top causes it all to spiral.

ALS is VERY different to this. You 'feel' just fine, but no matter what you do, your hand or arm or leg or foot or mouth simply will not work and you are gobsmacked as to why your body is simply not doing what you tell it to do. We try to explain this, but people get stuck on 'feeling' weak and think that what they feel must be what they fear. Most people with ALS don't believe anything could be that wrong with them and are stunned when they are told this gammy hand is a death sentence.

My Chris would constantly say (until the pneumonias that brought the end) that he had never felt so healthy and yet been so sick.
 
Hi Tillie,

I'm really sorry....

Thank you for your reply. The first 6 months it was easy to justify that I was ok... Better days, non restrictive condition. These days not so easy. I do feel a lot.... Each day I feel like I've been hit by a truck. Weak muscles, dull aches, stiffness cramps and sore joints.... Between the progressive nature and lack of coordination I'm scared of what's next.

I should have just posted a question about fibrulation.... That was really what I wanted to know.

Thank you very much for taking the time to reply. I appriciate your help.
 
"Most people with ALS don't believe anything could be that wrong with them and are stunned when they are told this gammy hand is a death sentence."

Tillie, right on! I remember Tom "rejoicing" when his MRI came back negative. His tongue was causing him to slur, we thought maybe a stroke. He said "See, it's nothing, it's not like I'm dying!"

Yeah, right, until he was referred to the ALS clinic at Duke. Pure shock. Just his tongue.
 
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