A Hopeful Update

[StillSteve]

It's been awhile since I've posted anything, and I don't want to leave a "hit-and-run" impression or only post bad news. (The two threads I started were "Is this PMA?" on May 25 of this year, and "Questions about the progression of this disease" on July 3. I had some mixed reactions, but most of my experience here has been positive.)

My last visit with a neuro was on June 17 at the ALS Clinic at the U of MN. As I wrote on the second thread above, the doctor agreed with my first neuro and told my wife and me that he "suspected" ALS. He found what he interpreted to be "upper motor neuron signs" (previous neuro hadn't). He said that he would repeat blood tests and order another EMG (my third).

The EMG was done at the Univ on July 8. This one was pretty comprehensive (testing of the muscles of both arms, both legs, upper and lower back, and the stomach). The examining neurologist told me only that he found progression in my left arm, and "one abnormal finding" in the dorsal interosseous muscle of my right hand (same place where I first noticed symptoms in my left hand over a year ago). I asked him about the significance of the fascics (he was seeing and detecting them everywhere), and he said that while they were "undoubtedly related to whatever is going on in your left arm," he couldn't say what was their significance. He said that my treating neuro would get the report that day.

I didn't hear anything until July 29 when I received a call from the ALS Clinic coordinator (she had called and left a message for me a week earlier, but I was out of town). She told me that my doctor had seen the results of my EMG, and that there was "nothing significant" found outside of my left arm, though "one twitch was found in your left leg" (somewhat puzzling, given what the examining neuro had told me). She went on to say something like "the doctor doesn't think this is looking like ALS at this time" (or was it just that "you don't need to be seen at the ALS clinic at this time"?), and that "he wants you to have another blood test, and to see you at his regular clinic." She mentioned something about him seeing me for a "neuropathy." (I wish I'd recorded the conversation; I couldn't recall much of it just a few minutes afterward.) She advised me to get blood drawn as soon as I could (she mentioned ganglioside panel), and to make the appointment for "a couple of weeks out to give time for the results to come back." I'll see him on August 17 (and won't be keeping my September 9 appointment at the ALS Clinic).

So ... very hopeful news!

I won't know the details of what he is thinking (and why) until I see him. He'd mentioned MMN and MMA as differential diagnoses during my June appointment. He said, though, that what he was seeing in my left arm was "more diffuse" than what would be expected with MMN, and that my EMGs did not show conduction block. In repsonse to a question from my wife, he agreed that my widespread fascics would not normally be associated with MMA. So I'm not sure what he thinks now, but I know that the ganglioside panel (which I've had at least once before) is used to diagnose MMN (and other conditions?).

As an aside (and in answer to a question put to me by someone on this site), I do not have copies of my second and third EMGs. I did get a copy of my first one. I know that some "fibs" were detected; I do not recall if "positive sharp waves" were also found. I do remember that some of the numbers on the NCV portion of the test were marked as abnormal. Whatever they show (the first two tests, at least) seem to have persuaded two neuros--including a specialist in ALS/neuro-muscular diseases--that ALS was "suspected."

I should say also that my symptoms haven't really changed much. My left arm and hand are probably weaker, but not dramatically. Other limbs seem fine. I still fasciculate like crazy, all over my body. I've had two episodes (separated by weeks) where I had trouble swallowing. These felt very strange, and they really happened, but I honestly just don't know if they are related or if I somehow "manifested" these symptoms. I'm not having trouble speaking.

I'm eager to know what my doctor is thinking now, and I'm feeling hopeful. My wish is that all of you who are questioning and/or in the process of getting a diagnosis, get good news soon.

B

 

[laurel]

Sounds like you have good reason for optimism --let's hope for neuropathy. Maybe it will be MMN or CIDP? Keep us posted please.
Laurel

 

[TedH5]

That is excellent news! It is very inspiring, please keep us updated on the results of your next appointments!

 

[Northern Dancer]

Bachster,
Thank you so much for the update. It sounds encouraging.

Lorna

 

[charlottecorday]

Bachster,

I am so happy for you! Hope is so important!Things are definitely looking up, considering you had two Docs? tell you you were looking at potential ALS.They did not have anywhere near the amount of information needed to spout that out(as I recall)at that time, according to the information you relayed on the Forum.I bet you are thankful, too.
information(as I recall) to spout that out.

 

[StillSteve]

My visit with my neurologist on Tuesday was not encouraging. Despite what I thought I heard the ALS Clinic coordinator tell me over the phone about the reason for the change in venue for my appointments, my doctor still suspects/fears ALS. He mentioned monomelic amyotrophy again as a possibility (that nevertheless doesn't quite fit), and though the results of the second ganglioside panel he ordered are not in, does not see multifocal motor neuropathy as a likely possibility.

I've got a copy of my third EMG report now, and the doctor who performed it concludes that "differential diagnoses include motor neuron disease and symmetric motor radiculopathies."

Only somewhat encouraging news is that changes seem to be slow. I have a copy of my first EMG (but not the second), and though they are difficult to compare (formats are quite different), it doesn't seem that much has changed, though comments on the latest note that "there is a slight reduction of CMAP voltages compared to previous studies."

It's difficult for me to say whether I notice much in the way of physical changes except for a continuing slight weakening of my left arm. Widespread fasciculations and cramping continue. Possible new symptoms are too subjective to be of much use. I've had two isolated swallowing difficulties that could be all in my head. Recently, I feel like my voice is somewhat "hoarse" and my wife noticed and asked me about it before I mentioned it to her. But again, it's hard to know if this is related.

It's hard not to be discouraged and fearful, though.

 

[charlottecorday]

Bachster,

Don't get discouraged yet.Do you know what your EMG showed exactly?Did you say you did or did not get copies?

You still don't have a definite diagnosed.
Charlotte

 

[KANSASTOM]

Bachster,
If it is a pure lower motor neuron type and very slow it could also be an adult onset spinal muscular atrophy. I have had an ALS diagnosis then turned to MMA then possible CMT with a lower back problem but adult onset spinal muscular atrophy fits me the best. There is a website, Jennifer Trust Foundation, that does have a short explanation of Adult SMA.

 

[lydia]

Bachster,
No doubt it must feel hard to remain optimistic after that visit, especially so soon after. But try, if you can, making sure to focus on your apparently very slow progression. That has to be some kind of good sign (if there are such things!). It might work out that you don't get any definitive diagnosed, with a few possibilities left on the table, that only the passage of time will help narrow. There are many here experiencing that lengthy diagnostic dilemma, myself included. I feel your pain!

Lydia

 

[StillSteve]

Thanks, all.

Yes, I have copies of my 1st and 3rd (most recent) EMGs. As I said, and as far as I can tell, they don't show dramatic changes (and this is what Dr is saying, too). My involvement doesn't seem too advanced or pronounced from what I can gather. There's enough there, however, that three neuros consider "motor neuron disease" first among possible diagnoses.

I have looked at the Jennifer Trust site and, in fact, I asked my first neuro about type IV SMA. She dismissed it without much comment. My current neuro (the neuro-muscular/ALS specialist) has never mentioned it. One reason may be that he thinks that he's seeing indications of upper neuron involvement. It's complicated by a previously-diagnosed condition that--in 2007 at least--left me without *any* deep tendon reflexes. Now I have reflexes in left foot, knee, and wrist. He takes the fact I had none before, but some now, as indicative of UMN involvement (neuro-ophthamologist wrote in 2007 that he was "unable to elicit any reponse in seven locations tested"). Anyway, he's still talking about MMA as a diff/diagnosed. I remember that you (KansasTom) were diagnosed with MMA. Has that changed? Also, my neuro discounts MMA (and MMN) at least in part because of my widespread fasciculations and cramping. What has your experience been with fascics and cramping?

I do understand, Lydia, that this could (likely will) be a long process to diagnosis. I know, too, that the longer the better. Living under the Sword of Damocles isn't bliss, but I know that as long as I can't be diagnosed with ALS, I'm doing OK. So I am trying to remain hopeful. I do not want this disease.

 

[pops66now]

I pray Bachster that you will receive the word that you do not have ALS.

 

[KANSASTOM]

Bachster, I guess my latest diagnosed is Monomelic amyotrophy, this was given to me by the second dr. I saw at the MDA clinic. My emg does not support this and I don't think the Dr. even looked at the report. I feel I fit into the Adult Spinal Muscular Atrophy category much better. I have really really slow progression, I guess time will tell. Good Luck, if you have to have a motor neuron disease MMA and Adult SMA are the ones to have, but still not a picnic.

 

[AndyDJX]

Thanks, all.

I do understand, Lydia, that this could (likely will) be a long process to diagnosis. I know, too, that the longer the better. Living under the Sword of Damocles isn't bliss, but I know that as long as I can't be diagnosed with ALS, I'm doing OK. So I am trying to remain hopeful. I do not want this disease.

This articulates how so many people feel in this section of the boards. You're not alone, Bachster, and you are in my thoughts.

 

[StillSteve]

Thanks Pops66now, KansasTom, and AndyDJX for the good wishes.