Concerned - Seeking Group Wisdom While Awaiting Tests

[DCDad]

Lixen,

Many thanks for your thorough and thoughtful response. I know how much time that took for you to write that and I am grateful for your kindness and reassurance.

This has been a tough few weeks for me and I wish I could make sense of the issues concerning my hands - transient discomfort/ stiffness in about 6 of my 10 fingers plus the thumb/thenar area of both hands. These symptoms coupled with the issue in my leg and the fasciculations really put me in a bad place. Hopefully some peace of mind will come after my upcoming appointment(s).

Again, thank you for the generosity of your time to reassure a stranger. I hope you enjoy the rest of this holiday weekend.

 

[DCDad]

I'm waiting for my MRI on Monday and it's been a rough couple of weeks.

Last week I developed a new symptom - the feeling that I am aspirating saliva several times a day. Is it possible to aspirate without a choking feeling? I just feel like I need to clear my throat - a lot. I know some here have said that was their first noticeable sign of bulbar onset.

My speech issues seem pretty constant since March - an occasional difficulty in pronouncing words and I've become very self conscious of my speech. I really stumbled over the word "regularly" yesterday AM and it took 3 attempts to pronounce it clearly.

My hands continue to have migrating pain. I do not know if these are the "cramps" that some refer to as early symptoms. I have an acquaintance who is a rheumatologist and had them look at my hands last week. They didn't see any problems that points to rheumatology issues. They did point out that my right thenar eminence seemed "small" compared to the rest of my hand. I am right hand dominant, but my rheumatology acquaintance assumed I was left handed when first looking at my hands.

How common is it to develop hand atrophy before noticeable weakness or diminished grip strength? I am worried that this may be the beginning stage of "split hand."

I really need to see a neurologist and I get an EMG, unfortunately my PCP will not entertain that until after Monday's MRI. I've tried to get my PCP to reconsider to no avail. The way things are looking it will be weeks before I can get to neuro.

All of this waiting is taking a real toll on me and I am exhausted from worry. The transient fasciculations are not helping me deal with any of this.

Thanks for listening.

 

[lgelb]

ALS typically has a bulbar, limb or respiratory onset -- not all at the same time. So it is far more likely that anxiety/dry mouth are part of the underlying constellation here.

Nor is significant atrophy before clinical weakness the norm, since it is the same nerves that die and cause the disappearance of muscle that is no longer being triggered, that produce weakness.

 

[DCDad]

Laurie,

Thank you for the information. I appreciate it.

 

[DCDad]

UPDATE

I had my spinal MRI on Monday evening (6/19). I was travelling much of this week on Reserve duty and missed my PCP's call on Tuesday (6/20) with the results. She sent a note to my House via mail that I received on 6/22. It was a very brief letter and had only limited details. It reads: "The MRI report showed mild degenerative changes and some mild narrowing of the path where your nerves travel. I have referred you to the neurology clinic (as we discussed previously)."

Does anyone know what this could mean?

Should I be alarmed with how quickly my PCP attempted to contact me with the MRI results? I had the MRI after hours on Monday and missed my PCP's call to convey the findings at lunch time the next day. My wife has had MRIs in the past and thought that was a really quick turn around for an MRI reading - this was something like 4 "business hours" later.

I don't know what to make any of this. I think this could plausibly explain the issue with my left leg (atrophy in calf and thigh w/o pronounced weakness), but I am lost as to what is causing the issue with my hands (intermittent pain and cramps) as well as the transient fasciculations I'm experiencing in various parts of my body.

I use the VA for my health care and I'll probably have to wait 30-40 days for my neuro consult. These have been some very challenging months and I'm not relishing more uncertainty with the what's causing these troubling symptoms.

I will keep the group posted with what comes next. I hope that my updates may be helpful to others in the DIHALS forum who may be having similar problems/anxiety.

Thank you for reading and I especially thank anyone who may be able to offer insights on the note I received from my PCP and the rapid timeline the results were shared.

 

[Lkaibel]

Actually, I DO find Lixen's comment about the video valuable. As someone who has suffered some health anxieties (not ALS, usually cancer) it always helped me to hear that what I thought was some significant info was really an oddity that freaked a lot of people out. It adds perspective, seriously.

DD, I think it really does sound like you have had some things going on in your life. I am just going to guess nothing life- changing for you is found.

 

[lgelb]

From what you quote, sounds like radiculopathy secondary to mild spinal changes that oodles of people have. Very far from ALS, and a lot of treatment approaches, including watchful waiting. And, as Lenore says, not something that is likely to change your life.

What can change your life for the better is a more nuanced approach to your health, I'm guessing, as Lixen suggested.

 

[DCDad]

7/18/2017 UPDATE

I wanted to drop by and provide an update to those that follow the DIHALS forum.

This morning I had my initial neurology consult and spent well over an hour with the neurologist reviewing my symptoms and completing a neuro exam. She informed me that my June MRI revealed a mild degenerative radiculopathy at the L3, L4, L5, and S1 levels.

The neurologist is most concerned with the visible atrophy of my left leg. This was first observed clinically in early 2014, but has worsened over the past 6 months despite regular daily exercise (running and biking). Since I reported experiencing transient fasciculations since late April, she ordered a series of blood tests, an EMG, and an NCS. She will also refer my to physical therapy.

During the physical exam she observed that I had some slightly diminished strength in my left thigh when asked to raise it against downward resistance. This came as quite as a surprise as I hadn't noticed weakness there before. She found my upper reflexes to be "excellent", but commented that the reflexes in my legs were "brisk" but equal bilaterally. As a wait for my EMG and deal with this uncertainty, I have the following questions for the group:

1. Is there any significance to having "brisk" reflexes in the lower extremities, but not the upper ones? Is this something I should be concerned about?

2. Would all reflexes be brisk at the onset of UMN symptoms, or does this progress from one limb to the rest of the body?

3. Is it physiologically plausible for a minor radiculopathy to cause such severe atrophy in a leg (left calf is now over 9 cm smaller than my right and muscle wastage has spread to my outer upper thigh)? Does this seem like something more severe?

4. How often have you seen patients that present with limb onset ALS in their legs prior to significant weakness or the classic distal symptoms like foot drop, stumbling, falling?

5. At this stage, what should I make of the presence of transient fasiculations throughout the body? I have them sporadically in my legs, arms, upper back, mid back, eyelids, and most recently my right jaw?

I genuinely appreciate all the time and guidance offered by the moderators and greatly welcome your feedback. I don't know what to make of any of this and am very worried. I've been under the impression that my reflexes were "fine" since my PCP appointment in May and now I've learned that this is not the case. The neurologist's finding of weakness in my left leg also is causing me great worry as I hadn't noticed that.

Thank you again for your time and commentary. I am quite aware that the upcoming EMG may very well reveal a life altering/ending diagnosis, though I pray that this is not the case

 

[Clearwater AL]

Here's a suggestion... call or go on the web site of your Neurologist (most all of them have web sites) and ask your questions 1 through 5.

You are asking neurological questions almost seeking a prognosis/diagnosis.

Your questions are kind of similar in wordage to those of patient case studies. I'd guess you have visited Dr. Google.

Then you wrote...

("I am quite aware that the upcoming EMG may very well reveal a life altering/ending diagnosis.")

PS. Another suggestion... go back to your first post and carefully read the replies you received.

So much for hoping it could be anything else but "a life altering/ending diagnosis".

Yes, do pray, and pray hard it's not the case.

Hope the EMG gives you good news.

PS Go back to the first post you made on this Forum and read the replies you received.

 

[Nikki J]

I would not worry about the reflexes. Brisk reflexes are not uncommon and bilateral especially usually means normal variant. It is not unusual that one set be brisk and another " normal"

reflex changes in MND would be associated with disease progression so are usually lopsided

The atrophy question should be asked of your doctor who has seen you and your MRI

I don't understand question four- are you asking limb onset without symptoms? The damage starts and is seen on emg before symptoms but of course without symptoms people don't get evaluated and diagnosed. People can start with upper motor neuron signs like spasticity and clonus before weakness

Since twitches are non specific I would ignore them.

Good luck with your EMG. There are many many causes of weakness including radiculopathy so please don't worry in advance of information

 

[DCDad]

Nikki and Clearwater,

Thank you for your replies. I apologize for the negative and fatalistic tone in my earlier post. I've been dealing with these symptoms for about four months and like others on this board, I've been through the psychological wringer and fear of the unknown.

Nikki,

I'm sorry if I didn't word some of those questions well. To clarify, I was asking to see if the more experienced folks here had seen someone with lower limb onset ALS present with physical signs like calf/thigh atrophy before the more classical signs like foot drop, severe weakness, clumsiness, etc. I have this significant disparity in leg size that is getting worse, but I do not have appreciable weakness doing daily activities. I can still run, ride a bike, go to the gym, but the atrophy continues nonetheless.

 

[Clearwater AL]

"... but I do not have appreciable weakness doing daily activities. I can still run, ride a bike, go to the gym."

Not being cynical here, just asking... which is it?

 

[Atsugi]

Hi, DCDad. Just thought I'd read through your posts and give you my impressions.

First, I think your best advice here is from Nikki. Second, I think you're abut more worried than you need to be. All your indications and your doctor's actions are pointing to non-fatal problems. I am only familiar with ALS, so I can't guide you more. Seems to me you dodged a bullet, but you're understandably still gun shy.

 

[Nikki J]

Actually, Al, I understand DC's concern as it appears his neuro found clinical weakness that he had not noticed. There are, as I said, many explanations for this much less sinister than ALS but it is understandable that he wonders. Hopefully his tests will give him answers soon

 

[Clearwater AL]

DC, have you had your EMG and NCS yet?

Maybe the EMG will support the Neuro's first and only (so far) initial observation of clinical weakness.

Nikki, isn't usual practice for a Neuro to do more than one physical exam before confirming clinical weakness? Maybe I missed it in DC's many posts... I couldn't find a mention of clinical weakness. I'll try again.

DC, you mentioned... The neurologist is most concerned with the visible atrophy of my left leg. This was first observed clinically in early 2014. ?