Als in office exam

[TomR1972]

I am seeing a neuro at Stanford who doesn't believe I have als based off past tests and my two appointments with him about 4 months apart.  He feels with all that info and the fact he can't detect anything in his in office exam that the chances of me having als is about 1 in 50 maybe even 1 in a 100.  What are your thoughts on this?   I know this can be a very hard disease to diagnose but he seems pretty sure that I don't have it.  However he is putting me through my 2nd emg/ncv, the first one done elsewhere was rather quick and I felt didn't offer much merit.  I am also going to have a ssep test done.  

Can you tell me why the ssep test would be administered in my case?
Also can you tell me if as a Dr. you can pretty successfully guess that a patient might have als?

I have had symptoms for a just over a year now.  
He feels something more would be picked up in an office exam by now.

[TomR1972]

If you have a moment could you please respond to my prior post above?

Thanks in advance for your time!

Tom

[TomR1972]

If you have a moment could you please respond to my prior post above?

Thanks in advance for your time!

Tom

[TomR1972]

When this first started I alternated between feeling cold and hot but never ran a temperature that I was aware of.  

Now I do have very bad fasciculitis on my right (bad leg) that has now progressed slowly over to my left.  All the derms I have been to pretty much leave it at the point of nothing can be done, could that play into the myositis aspect?

I have had autoimmune tests done and the problems uncovered but according to my neuro not explaining symptoms were:

Antiphospholipid antibodies but not lupus
And at the time a current and past (forever) infection of the Epsetin Barr Virus.  Now the funny thing with that is the rheum noted that this would explain my extreme tiredness at that time.  However if I am not mistake EB is MONO and if thats the case I should have experienced enlarged lymph nodes which at the height of my troubles were not present nor are they now.  That always seemed strange to me.  She ended saying that I have something happening, don't know what it is but that there are lots of unexplained viruses etc that can have such an impact.  Even the Stanford Neuro says somethign similar but that doesn't make me a feel that much better.  I say this becuase after the extensive amount of reading I have never read of someone having over a year of unexplained problems that abruptly ended.  Nor have I heard anyone quote Dr's saying anything similar to what mine told me.  I know there is a lot of incorrect information on the internet which I try my best to decipher but I keep feeling I would have come across something similar to what I am being told by now.  Thoughts?


Thanks for your time yet again!


Tom

[TomR1972]

When this first started I alternated between feeling cold and hot but never ran a temperature that I was aware of.  

Now I do have very bad fasciculitis on my right (bad leg) that has now progressed slowly over to my left.  All the derms I have been to pretty much leave it at the point of nothing can be done, could that play into the myositis aspect?

I have had autoimmune tests done and the problems uncovered but according to my neuro not explaining symptoms were:

Antiphospholipid antibodies but not lupus
And at the time a current and past (forever) infection of the Epsetin Barr Virus.  Now the funny thing with that is the rheum noted that this would explain my extreme tiredness at that time.  However if I am not mistake EB is MONO and if thats the case I should have experienced enlarged lymph nodes which at the height of my troubles were not present nor are they now.  That always seemed strange to me.  She ended saying that I have something happening, don't know what it is but that there are lots of unexplained viruses etc that can have such an impact.  Even the Stanford Neuro says somethign similar but that doesn't make me a feel that much better.  I say this becuase after the extensive amount of reading I have never read of someone having over a year of unexplained problems that abruptly ended.  Nor have I heard anyone quote Dr's saying anything similar to what mine told me.  I know there is a lot of incorrect information on the internet which I try my best to decipher but I keep feeling I would have come across something similar to what I am being told by now.  Thoughts?


Thanks for your time yet again!


Tom

[Abhijeet Deshmukh, MD]

Hi.

I have gone through your symptoms. Though it will be inappropriate to comment about any diagnosis, since I have not examined you, I would like to say that I get the impression of some myositis of fibromyalgia like conditions. This does not look like ALS. You can relax a bit.

I also suspect this to have started after some infection. Did you have any fever, chills, etc ? An autoimmune response has to be ruled out. You can discuss these with the Neurologist your are seeing. When is your next appointment ?

Regards

[TomR1972]

I started to feel generally not well.  Achy and tired a lot of the time. Started with my left shoulder blade feeling very tight almost frozen like.  This made my thumb not function right.  Felt like I couldn't thumb through a book with eaze. Then I had one spot on left leg above me knee that started to twitch.  I would say in a quick amount of time I became very lethargic, had a headache for 5 days.  Did nothing but sleep for about 2-3 weeks with absolutely no energy.  both legs felt weak and twitched. In bed I would constantly move my legs to get the twitching sensation to go away.  This was all from Jan 07 to April 07.  It got to the point where I felt my legs might give out, however they never did.  The left leg since has improved and is probably 99% normal however now I get aches and pains throughout it.  My right leg has gotten better where I feel much better and have no beliefs that I might fall.  It has gone from 4 months of dull aching pain to a constricting pain around the entire leg above my knee.  Both of my thumbs ache and hurt.  I have now noticed on the top side of my right hand between thumb and index finger no indentations but my skin is abnormally wrinkled.  No appearance of atrophy on the palm side at all nor on the sides of my hands from what I can tell.  I have on and off tongue issues where it feels dry(but is not), or like I slightly burnt it but that comes and goes.  This led to bad jaw and under tongue pain that comes and goes.  

I have had mri's with and without contrast.  Had most of the blood tests one can think about.  My main concern was the EMG I had in April at the height of my weakness. This test was given at a local neuro and was not that extensive. There was noise in my bad leg on the machine and the lady giving the test attributed it to back pain. I mentioned this to the Stanford Neuro and he said yes there can be noise on an emg that is not attributed to Als and that she should have had no problem differentiating that.  However since it has been over 6 months he felt a repeated test would be good.  

In the middle of all of this I did have a regular evp test that was normal but in the fine notes noticed a slight abnormal slowing at one point of the test.


What bothers me is that this seems to progress however it never knocks any one part out of commission as of yet.  The Stanford Neuro is one of the big Als Dr's and has been featured on an article from the MDA website.  I really believe he knows his stuff and though I progress it seems too back and forth to me for it to be ALS.  However I always read where many don't have the normal symptoms and end up diagnosed.  I am just hoping to alleviate some fears I have.  Sorry for the long reply.

I appreciate your time immensly,

Tom

[Abhijeet Deshmukh, MD]

Hello.

To answer your second question, the SSEP test is usually done in combination with the EMG to find out any deficit in the sensory nerves, either in the spinal cord, or in the roots. I guess your Neurologist wants to rule out any cord compression or nerve root compression.

"""Also can you tell me if as a Dr. you can pretty successfully guess that a patient might have als?"""

There are certain indicators to diagnose or rule out ALS. If the doctor is well informed about ALS, and has seen many ALS cases, he can be confident to a great extent.

ALS symptoms are actually pretty simple to note. There is a perceived and obvious weakness, starting from the small/distal muscles (feet), with fasciculation, spreading slowly to upper parts of the limbs and involving other muscles. This is a motor neuron disease. No sensory symptoms are involved.

I can not comment upon your first question, as i do not know your symptoms. Can you mention how it all started and what symptoms you have presently ?

Regards