I would like your opinions on my symptoms.

[dannyr]

Hello everyone, im new to the ALS forums and I hope I have put this in the correct section :?:
Basically I started having fasciculations in both calves in mid Jan 2013 a week after my second Hepatitis Vaccine, since then my symptoms have increased, I now have muscle twitches in shoulders, neck, buttocks and both upper legs and both upper arms. I have clear atrophy of left foot arch(which sometimes aches), and I have atrophy in my left calf and left thigh, above knee there is 1cm difference between left leg and right leg, and the left upper left thigh is 2 cm smaller than right thigh. My left knee also feels weaker and less muscle around it.

Fasciculations are ONLY in calves, they are more in my left leg and they started before atrophy was visible.

I also have full limb jerks and sometimes both legs jerk at exactly the same time and sometimes I blink and my head jerks like an electric shock. When I go cycling or walking I get this mild pain right through the middle of my thigh which is weakened and is effecting my walking down hills or steps (I feel like I have to be careful). I have also lost 5 kilos in the last 4 months.
I would appreciate anyones opinion on my symptoms, of course I realise I have to wait for the EMG and nerve condution test coming up next week, but it would be nice to hear from someone here.

thanks I appreciate your time and thoughts Danny

 

[dannyr]

Is anyone there? im not sure if I have put this message on correctly as I have only joined today? any reply would be great, thanks. Danny

 

[Barbie]

This would be better in the do I have als section, but eventually folks will see it here. no need to repeat it. Danny, we are not doctors, but your symptoms are a little new and minor to be worrying about ALS. 5 kilos in 4 months is nothing--and you say you have atrophy but what have doctors said? a one cm. difference in leg size is very insignificant and very common. we are not machines--only human beings with imperfect bodies. since every thing started after a vaccine, I would suggest you talk with the doctor who gave you that--look up side effects on that. you obviously did an internet search on twitching and found ALS--now you are freaking out. from reading your post, you seem to be grasping at anything you notice trying to get your "thing" to fit into ALS. big mistake--try to logically think-ALS is extremely rare, and it does not present the way you are describing. Now, I am not going to continue to discuss this with you, so please don't ask any questions like "but what about this and what about that" or "today I have a new symptom" . Good luck, don't read and study up on ALS, get off the internet, stop trying to diagnosis on line, and make an appointment with your doctor.

 

[vickim]

You said it all Barbie. Hope he gets the message and moves on. Sound harsh but They need to read the stickies before asking questions. Thank you.

 

[olly]

I'm with barbie on this one danny,nothing screams out als.
Everyone has a 1+ cm difference in limbs,the less dominant arm or leg will be smaller.
Twitching can happen in healthy people,people who exercise alot ect ...wide spread twitching is usually benign.
However you do want to mention the body jerks at your next appointment,i have these its called myoclonus .
Any further posts you need to put them in the "do i have als" forum...third one down.

 

[dannyr]

Thank you for the replies, I appreciate your straight replies. Believe me ive read the stickies and have spent plenty of time on here and BFS forum aswell, looking at other peoples situations, I just wanted to put my situation of clear atrophy on left leg and foot arch which is why doctor referred me to the Neurologist who has requested BMG and NCT nx week. Im not doing the ifs and buts. Thanks for your time.

 

[vickim]

Then try to understand we are not down playing that you feel you have a problem. We get hundreds if not thousands who have a twitch or a jerk and look it up and get lead here.

Twitching in als is not until the late stages of the disease. It is after the nerve and muscle are dying. I would guess that it is not als. I am not a dr though. They will be able to determine if there is atro phy and nerve damage. Be sure and mention the vaccine you had.

 

[Nighthawk]

Hi,

So you are saying basically that all the "symptoms" you are describing on your post started right after a Hepatitis vaccine, is that right?

The most interesting part of your post is this one (QUOTE): " I realise I have to wait for the EMG and nerve condution test coming up next week, but it would be nice to hear from someone here."

So, why don't you patiently wait for this upcoming appointment and get your EMG and Nerve Condution Test done first and then, you can have a real diagnosis by an expert on the field (a Neurologist, whom I suppose is going to do the EMG, right?) ?

I would dare to say that as soon as you saw some of your muscles twitching, you anxiously started an Internet Search which in turn, gave you some links and you ended up landing here, on these forums, right?

We can NEVER replace a diagnosis made by an expert (Neurologist, GP, Cardiologist, ENT, etc.) since we are no Doctors here. We are just ALS patients (who were diagnosed by experts Neurologists) and our Caregivers. We can give you some rudimentary advice here, based on what you describe but we are never meant to be a replacement for an expert in Medical Science.

So, my advice to you: Wait for your upcoming appointments, get your tests done and then, you can come back and let us know what your Doctors said. That simple.

We'll be here to help.


Best of luck,


NH

 

[Uptown]

I am mystified why so many people come here to refute what doctors and tests are telling them in hopes they have a terminal disease. Then the stress of believing only what they want exacerbates all issues and starts a downward spiral. On the oral cancer forums we have about 9,000 members and about 1 person every few weeks strolls in convinced they have late stage cancer but wont go to the doctor to find out. <smh>

 

[Nighthawk]

@"Uptown":

You are right in your assessment.

Sometimes...I think we are worse than them (by them I'm referring to the "twitching newbies").
We log in onto the forums and patiently, "babysit" posts... and, wait...wait...wait...wait...and wait for them to land on here with their paranoid hypochondria, to start lengthy posts, sometimes with no punctuation rules, no spaces between paragraphs, no capitalization where it's supposed to be, etc.
Sometimes, I tend to overlook such long posts because of my brain fogs and it's hard to read through so much "information" and to process it and digest it.

And we keep answering, and answering, and answering...practically the same answers we gave the previous twitching newbie who came here asking similar questions. It's like a vicious cycle.

The majority of them, just ignore the stickies at the top of the forum, and...also ignore PREVIOUS THREADS (yeah, previous threads that may have the same questions that were asked previously and the same answers for what they are asking now).

They also ignore what their Doctors, Neurologists, GPs tell them. Sometimes, even with clean EMGs they refute what the Neuros tell them and the overwhelming evidence of a clean EMG, and...keep claiming that: "They think they have ALS". An extremely RARE disease, that many Neuros take months, and even years to diagnose.

And then, they come here seeking "advice" but...what they really want is to drag us into making a diagnosis even when they know the people on this board do NOT hold an M.D.
in any Medical Science speciality and, any"diagnosis" we could try to make might be misleading and plain wrong.

But, again...it's a vicious cycle.


NH

 

[olly]

Nighthawk ,your words of wisdom are like........."whipped cream on double chocolate cake" to my ears:wink::grin:. Every bite as tantilising as the last.:wink::grin:
Mr T would be sooo proud.........