Do they really don't see it ?

[ptich]

Just picked up a report from my last neuro visit, a month ago. The only objective, important piece of information there was that my deep tendon reflexes are 3+ (brisk). I remember that they were normal (2+) 20 monthes earlier, with the same doctor.

The rest of the report was... Well, firstly he stated that I have an "unspecified" psychiatric desease that makes me think I have ALS. Ok, fine. Then he says that I showed him muscle wasting areas, and they all were normal. This kind of put me off. I have a clearly visible erosion, abot 8mm x 5mm, on the left side of my tongue (unless, of course, my "unspecified psychiatric desease" is so bad that I have visual hallucinations), and I specifically pointed this area to him. Muscle wasting under my index finger on the left hand is so visible now that it would really take a hell of an unspecified psychiatric desease to miss that one...

I am wondering, do they pretend not to see all this stuff to reassure patients for as long as they can ? After at least 4 years of various UMN symptoms, 2 years of fasciculations, and 1.5 years of muscle wasting, an ALS diagnosed would mostly mean just a welcome social security benefits to me, as working is getting harder and harder... And even if his goal was to reassure, he chose a really peculiar way to achieve it.

 

[kylisa]

I can only tell you this: Either you don't have ALS or your neuro is not experienced with ALS.

My mother began seeing a local neurologist in July 07 for a dropfoot. He ran different tests but could not give her a diagnosed of anything in particular.

By Nov 07 my mother was visibly getting worse. He still couldn't tell us what was causing her symptoms and even went as far to tell us it was all in our heads.

I took the initiative to have her see a Neuro Surgeon at University of Kentucky Medical Center. This specialist had no problem seeing my mother's condition. The doctor ordered more tests and within a month, my mother had the ALS diagnosis. I did question the specialitst on why her original neurologist didn't see it for what it was. We were told that many neurologists have never seen a patient with ALS and, that while we felt jerked around, it was most likely that he didn't know what to make of my mother's symptoms.

Hope you find your answer soon and I hope you don't have ALS.

 

[crystalkk]

I can't believe your nuero actually wrote "unspecified psychiatric desease".

What are your UMN symptoms?

Maybe you should see a new nuero don't mention anything about ALS. Don't bring any of your records
that mention that you think you have ALS.

 

[Searcher]

I've been down this road, off-and-on now for 28 years, with neuros and other docs saying my symptoms are psychiatric. In fact, even got on disability at one point BECAUSE of this; for psychiatric disability. So far, the docs have been right - mild, mostly intermittent symptoms - but now I am clearly progressing. I have proof that my tongue is more worn than 2 years ago because I had a speech pathologist take pictures of it then. And a rheumatologist agreed last week that tongue was more worn on one side and weaker on that side. So now it sure looks like I have atrophy of tongue, along with more speech and swallowing difficulty. I hope you have something else but would not say it is only in your head.

 

[ptich]

Hi Searcher,

While it was 4 or 5 years since I clearly got UMN symptoms (clumsiness of the left hand), it was probably going on way longer, so I was not surprised by your 28 years. When we just moved to our house almost 15 years ago, my family noticed that my step (on the 2nd floor) was very heavy, probably because my foot was not sufficiently flexible relative to my lower leg. I had this problem ever since, and probably had it even before.

Then, more than 10 years ago, my eyes started getting this slight "chameleon" look. I think it is a sign of some kind of a degenerative process in the brain, probably not specifically ALS. Or may be it is just muscle wasting around my eyes (though I don't think I could've had LMN symptoms that early).

And then, somewhere between 7 and 10 years ago, a severe ataxia set it, I called it "a teh desease"

I do beleive that now I have some cognitive imparements, too, they are pretty standard with UMN-dominated ALS onset. But they have nothing to do with what the neuro meant.

 

[Searcher]

So you are now worried it is ALS because you've seen some definite progression? If it is, like me, would surely not be a typical presentation. Hope it is something else - anything else!

Searcher

 

[CindyM]

I started my journey with doctors saying I should be very worried. And I did worry, too, for about a year. I am now in my second year of symptoms, and although some are slightly worse many are basically the same. I feel like I have a choice right now: continue to worry or go live my life?

When I hear about people with symptoms that drag on for 5, 10, 20 years or longer, I think I know my answer. Life is going on all around me. I have decided to join it.

I've said several times that I am about ready to declair myself cured. And I am. I'm still not able to open envelopes, climb stairs, pull up zippers, and so on. But I do not have a DX of ALS. Therefore I am not terribly sick, IMO.

 

[ptich]

I am not sure how typical or not this type of persentation. It is possible that many folks just do not notice early UMN symptoms. But for me, it is progressing, and I clearly have both UMN and LMN symptoms, plus now the brisk tendon reflexes (confirming that I have UMN defficiencies) - this makes anything but ALS extremely unlikely. I hope your case is different (especially if you don't have brisk tendon reflexes).

 

[CindyM]

I had brisk reflexes for about a month. two different doctors mentioned them, and now whenever they test me they say, "Humm- I thought i found those to be brisk at one point."

I am lucky in that I did not know the significance of brisk reflexes, or fasciculations, or "dirty emg's" until after they told me I had those things. And by the time I came here and learned what they meant, the ALS clinic could not find the brisk reflexes and cannot explain the dirty emg or muscle wasting. They confirm I have these things, but don't know why.

My theory is you can get used to anything. Or at least I seem to be able to.

 

[Searcher]

I started my journey with doctors saying I should be very worried. And I did worry, too, for about a year. I am now in my second year of symptoms, and although some are slightly worse many are basically the same. I feel like I have a choice right now: continue to worry or go live my life?

When I hear about people with symptoms that drag on for 5, 10, 20 years or longer, I think I know my answer. Life is going on all around me. I have decided to join it.

I've said several times that I am about ready to declair myself cured. And I am. I'm still not able to open envelopes, climb stairs, pull up zippers, and so on. But I do not have a DX of ALS. Therefore I am not terribly sick, IMO.

Have you been diagnosed with anything?

Searcher

 

[Searcher]

I am not sure how typical or not this type of persentation. It is possible that many folks just do not notice early UMN symptoms. But for me, it is progressing, and I clearly have both UMN and LMN symptoms, plus now the brisk tendon reflexes (confirming that I have UMN defficiencies) - this makes anything but ALS extremely unlikely. I hope your case is different (especially if you don't have brisk tendon reflexes).

I have brisk reflexes; even was told this this past week during a doctor exam. However, I don't believe brisk reflexes by themselves (unless maybe very brisk or pathologic in some other way) necessary are upper motor signs. Someone very wired or nervous might show brisk reflexes for example.

Whatever you have, hope it is as benign as possible

 

[Searcher]

I had brisk reflexes for about a month. two different doctors mentioned them, and now whenever they test me they say, "Humm- I thought i found those to be brisk at one point."

I am lucky in that I did not know the significance of brisk reflexes, or fasciculations, or "dirty emg's" until after they told me I had those things. And by the time I came here and learned what they meant, the ALS clinic could not find the brisk reflexes and cannot explain the dirty emg or muscle wasting. They confirm I have these things, but don't know why.

My theory is you can get used to anything. Or at least I seem to be able to.

Yes, I've had this too - sometimes brisk reflexes, other times not; over many years. Did you have one or more abnormal EMGS (dirty EMGs?) and others that were considered normal? This is what my case has been.

Searcher

 

[ptich]

My first EMG, in January 2007, had several points of IIA (Increased Insertion Activity) in the Fibrillations column, and one point of 1+ in Fasciculations column. The second EMG, in December 2007, was normal.

Searcher, I think the best strategy may be something like this:

1. If you can, and willing, to distract yourself from your symptoms, then do it, and stop pursuing the diagnosed, for as long as you can.

2. If you can't, or need a diagnosed to plan your life accordingly, then go to a specialized clinic, and be prepared for not very pleasant things like long EMGs, muscle biopsy, and spinal tap.

In either case, don't ask too many questions on this forum because nobody really knows much about this desease, it differs enormously from case to case. The same holds true for your local neuro. Don't overestimate a specialized clinic either, but that would be your best shot at a diagnosed if you need it.

 

[Sammantha]

I would go into this "unspecified psychiatric desease" more with the doctor........ because they should be just as careful diagnosing a mental disorder as they are with anything else... I would ask why, what proof, and how it should be treated...... and i would ask what if it is a misdiagnosis, what then? Most docotors dont see patients who come in saying i think i have ALS. They are usually referred after months of testing for muscle atrophy, facics, speech etch...........Not to say that is your case..