Continuing to Slide

[Guest]

no curtrill,you dont have weakness..........maybe fatigue but your neuro exam ruled out clinical weakness........am i right or am i right!

 

[Guest]

. . . so let me get this straight:

Your doc told you that you don't have fibro (a non, life-threatening condition) and you believe him. He also tells you that you don't have ALS (a rare, life-threatening disease) and you don't believe him? What is wrong with this picture. I'll tell you: A LOT.

Enough with trying to interpret your EMG. The impression of your EMG was already given to you by your neuro and the conclusion was that some unknown denervating process occured that subsequently stopped. Reinnervation then took place. In other words, you have healed from that process. Celebrate life.

Listen, you talked yourself into possibly having ALS. Therefore, you had the privilege (did you hear me, privilege) of walking in the shoes of a PALS (not physically, but mentally and emotionally . . . kind of). You now have the good fortune of stepping out of those shoes, something a PALS does not have the luxury to do as of this moment. Be thankful for your good fortune and take this life's lesson to further the ALS cause in whatever way you can.

 

[Guest]

Wright

Thanks for your good insights.

I was just curious if psw's and fibrillations can go spontaneously silent during EMG like fascics can?

Thanks in advance for explaining these things to the people in this forum.

 

[Guest]

I hope you realize that my sternness is meant to help you.

Something happened to you (probably something autoimmune) that is not progressive, even though you might have some symptoms that might appear to be progressing. Think of it as a hurricane hitting a town; it hits and does its damage . . . then the town is left to recover but it isn't going to happen overnight.

I also believe part of your present physical state is due to mental and emotional anguish . . . that is . . . you're making it worse with your doom and gloom thoughts. Once you realize that you are not going to die, you will start feeling better quicker and you will get through this just fine. The body has an amazing ability to heal. Be patient and let whatever it was that has hit you, run its course. Eventually, you will most likely make a full recovery.

I wish you peace in the meantime.

 

[Guest]

Olly,

You are correct. I do not have "clinical weakness". My symptoms, as described, came on in a matter of weeks. They haven't let up and have spread. My concern is that this will continue and become clinical weakness.

 

[Guest]

Wright

I understand the sterness. I appreciate your help.

So the fibrillations and psws wouldn't come and go like fascics and possibly be missed?

 

[Guest]

give me strength...............
cutrill,clinical weakness is caused by injury or disease to the brain or spinal cord............as you dont have anything neurologically wrong with you you will not develop clinical weakness..........FULL STOP!.
we have already explained many times that fibrillations and psw's will be detected if they are there,no they would not come and go.

do yourself a favour (and us).........go and take a long vacation from this forum.
honestly,you will not get better by being here and fixating on all of this.

 

[Guest]

I asked the neuro at mayo if there were any other specialist I should see and he said no.

Guess he needed to break out the neon sign, spotlights, and marching band, too, eh?

 

[Guest]

Update, I saw the Professor and Head of the MDA/ALS clinic this week. I was examined twice. First by a nuero intern and then the professor. He stated that my exam was normal. No "clinical" weekness, normal reflexes. He did not recognize the asymmetry in my right foot and calve that my GP and spinal doc did months ago. He stated that there were no other mimics to test for. My blood studies were normal. He stated that a muscle biopsy could be done and would be normal, inconclusive or pathalogical......(obviously ....and a true statement for 100% of the population). My regular nuero and the Mayo did not feel a biopsy would be helpful. He said they could just follow me and see what happens.

My symptoms ....continue to progress throughout my body. Legs are heavy, stiff and weak. They feel like they weigh 100 pounds each when standing or walking. Tightness, weakness throughout the limbs. Loss of stamina, muscle tone etc.
This started about 11-12 months ago. Has anyone experienced these symptoms (you can read my other posts for sx if you like)?
If so, how did it turn out?

Can it take this long for docs to figure it out? It seems like they work from an approach of such absolutes. If there's not obvious symptoms they just look at you, mumble something, shake your hand and leave. I've been in this body almost 47 years and know what normal feels like and this ain't it! The treatable stuff that they can test for has been ruled out and this isn't getting any better. It really places a person in a lonely, desperate spot.

I will again praise God that I have not been diagnosed with ALS.

I don't mean to irritate those who've anwered in the past. Just looking for direction from those that may have had similar experiences.

Thanks, Curtrill

 

[Guest]

Curtrill,

When your symptoms can't be verified upon examination by the experts, there comes a time when you've got to at least consider the possibility that they are being generated in your head. This is probably that time. What do you have to lose by giving some attention to all the anxiety you have and doing something about it?

And it's not the doctors who are insisting on dealing in absolutes -- it's you. The doctors have cleared you of all the bad neuromuscular stuff you could possibly have, yet you continue to hang out here and argue with anyone who tries to point out just how well off you are. Heck, if my attitude was as negative about good news as yours is, I'd have long since blown my brains out.

Whatever you have, it's stumped the experts. The only experts you haven't tried are the psychological/psychiatric experts. There are a couple of good threads here on conversion disorder and similar problems that are generated in the unconscious mind. Take a look at those threads and do some research on the subject. Really, it's the only thing you have left to try at this point.

 

[Guest]

hi curtrill.
first let me correct you..........you dont have weakness that was ruled out but you may have fatigue as described with your legs.
your muscle tone is fine according to your neuro exam,no hypotonicity or hypertonicity that would indicate lmn or umn desease.
just wanted to clear those up for anyone else who reads this.

my instincts still say fybromyalgia or chronic fatigue syndrome.
these can have spasms,fatigue ect and can leave a person quite incapascitated.
your plan of action should be exercise like swimming,healthy diet and help with stress.
my mum has m.e ,years ago she could not get out of bed some days but now (with some help from meds) she works partime,goes to the gym 2-3times a week ,eats healthy and is doing great.

give it a go say for 6mths making slow changes and see what happens.
honestly i am not trying to get rid of you but i think its time for you to leave,this forum is not a good place for you to be........and we can not help you anymore or give you a diagnosis.

i wish you all the best,take good care.

 

[Guest]

Ok Curtrill

Let me explain something to you. Fibromyalgia (even if the neuro said you don't have it) is more common than one would believe, and despite the fact that it IS an accepted diagnosis by the American Academy of Rheumotology and the fact that we now have medications for it--there are THOUSANDS of doctors that do not believe it exists.

You mentioned Mayo Clinic--Mayo has a fibro clinic. See them and let THEM tell you that you don't have it. Believe me, it DOES make you 'feel' weak. And exhausted. And can make a flight of stairs seem like a marathon when in a current flare.

It is usually diagnosed not by a neurologist, but by a Rheumy. It doesn't show up in bloodwork--although for many of us, our sedrate is elevated almost all the time (showing chronic inflammation)

I wish I'd have kept my site on it up--there are more symptoms than you'd think---if you have PM rights--I can tell you more about it than you'd ever want to know--including how to get it diagnosed and treated. If it was ruled out--please PM and tell me what they did to rule it out--BEFORE you go read up on it.

You don't have ALS--trust Wright that the things that show in EMG are there long before symptoms.

Autoimmune can be notoriously hard to diagnose--but again, it's a Rheumy who is best at diagnosing anything autoimmune.

 

[Guest]

Hello Curtrill,

I am not sure if you are still following your initial post but I wanted to tell you that I am in a very similar situation to you. I have seen a number of neurologists and have had one clean EMG and normal neuro exam despite stiffness, twitches, fasciculations and extreme fatigue. I recently (2 days ago) had another EMG and neuro exam at a neuromuscular clinic. The EMG showed the same things as your last one: polyphasics and re-innervation in both distal legs. The neuro exam was once again normal AND the ALS specialist saw the twitches on the EMG. I was scared that he was going to give me some terrible news since I could hear him say all those findings to the resident in the examination room. Ultimately he said: you do not have a muscular disease, I am not going to do a biopsy because there is no indication that I should do that, you do not have a terrible disease such as ALS. I didnt question him too much but he said that he would like to repeat an MRI of the lumbar region and that he believes that my symptoms are caused by a nerve irritation/injury. I had an mri done on my cervical and thoracic area and assessed by a top neurosurgeon. The only findings were mild spical cord degenerations where there was very slight pressure on the spnal cord in the cervical and a bit in the thoracic area. He also found a very small syrinx in the cervical area (8mm long and 1mm in diameter). All of those findinds were of questionnable clinical significance and could not be associated with my symptoms.

The conclusion was: wait and see, investigatge the lumbar region a bit more with another MRI.

Just one more comment on MRI's: there are many different resolutions/qualities for these. It is important that the MRIs that you had allowed to assess spinal stenosis. The typical MRI that looks for tumors is not detailed enough to make a clinical diagnosis of a syrinx or stenosis. Both of these can be a differential diagnosis for your symptoms.


To finish, my symptoms progression started about 2 years and 8 months ago...it is getting worse but very slowly. The neurologist said that my history, neuro exam and symptoms were pointing away from ALS. Even with a dirty EMG he said the chanes of ALS are 0%.

Hope that this information helps a bit, I believe that you and I should try to forget about ALS and get along with our lives...perhaps an hour or a day at a time at first. Once you convince yourself of something and start obsessing about it, it is difficult to live a normal life. Manage your symptoms best you can, I was told to take up swimming...did so yesterday.

Cheers, Matt21

 

[Guest]

Neuro is scheduling me for a muscle biopsy. Not positive what all this can detect. Or rule in or out.

He first mentioned another emg in a couple of months. But after 5 of these now that say no als that kinda threw me.

Symptoms continue to progress.

Thanks for your prayers as you have mine.

Curtrill

 

[Guest]

Symptoms continue to progress.

Really? What symptoms have progressed and how have they progressed? Has your neuro verified the progression and what does he/she think is causing it?