Dirty EMG

[preacherman]

Greetings:
It is hard to say where I should start; I guess from the begenning. I have been having strange little 'issues' for several years. It seems like they have been coming and going. I generally do not have time for a doctor visit so I have been letting them go, thinking "That's what happens when you turn 50".
Guess the first thing of any consequence... that I finally went to the doctor about, was a problem getting enough air... seems like I could breath just fine but there never seemed to be enough air. Went to the doc and they started the tests... x-rays, etc. etc. Found nothing. I felt really stupid and went home telling myself that I needed to be near death before ever going back to a doctor.

Over the next couple of years little things would bug me... I would get so tired in the afternoons. At the time I was doing floor installations as my day job; something I had done for many years, so I was no slouch as installing carpet is very demanding. My wife would say that I am just getting older and of course I shouldn't be able to do what I used to do. I guess I believed her, but I was not ready to slow down.
Unfortunately my body was. I remember telling her one day, "I don't get this... Working and exercise is supposed to make you stronger, but it seems the more I work, the weaker I get. Sometimes I would get to a job and not even hardly have the strength to carry in the tools.

Time for a change. I had driven truck over the road in my past so it was time to go back to that. Ok, but I started finding it difficult getting into and out of the truck. walking to the truck stop, etc. I just couldn't believe how lazy I was becoming. As well, I had noticed that sometimes I would be driving along and suddenly I wouldn't even know where I was... very scary. I had also noticed that words were not coming
out right. People were always asking me what I said and it was very frustrating.
All this got me thinking that there was more to this than 'being 50'.

Some things that had been going on: I have always had a shake, but it had grown much worse. Cramps...very painful cramps pretty much anywhere, though mostly in my legs. Very difficult to concentrate and focus. Was always tired. Had no strength, couldn't do what I used to do. Yes, I know I am over 50, but I have many relatives still doing carpet into their 70's... though slowly.

Started researching what was gong on and came up with MS. Guess it's time to see a doctor again. After a CT (clean), the GP referred me to Neurologist. After an MRI, EEG and something else (all clean) he referred me to another Neuro. Said she was a 'movement disorder specialist'.
At the first visit she mentioned Polyneuropathy and scheduled an EMG and a fluoroscopy (I forgot to mention that I had developed a difficulty with swallowing).
The fluoroscopy showed that there was minimal penetration while eating a cracker. The EMG doctor seemed bothered by what he was seeing. He kept telling me to relax the muscle... It was relaxed.
Finally after it was done I asked him how it went. His reply: "It's complicated'. Then he said I would have to talk to the referring Neuro. When I asked her, she said there were 'inconsistencies' with the EMG and she scheduled another in three months, but that was all that she would tell me. Very frustrating, though what I have been reading, I am sure everyone knows that feeling.

Symptoms I have noticed lately that I feel are worth mentioning (and that have steered me away from MS and toward ALS... other than the clean MRI:
I noticed that my left hand is noticeably smaller, less meaty than my right... the muscle in my thumb is all but gone. when I relaxed my thumb completely I saw that the muscle that is left is constantly moving by itself. It does this all the time, not just every once in a while.
I heat my house with a pellet stove and I cannot even lift a 40 pound bag of pellets off the floor without having to set it on a chair before finally getting it into the stove.

After reading some stuff I looked at my tongue (yes, I have seen mixed statements about tongue fasciculations); anyway, when I look at it in the mirror it is always moving... looks like worms under the surface. I can't feel it, but every time I look, it is doing it; day or night, before or after eating...always doing it.
There are many more little things, but I am trying to keep this brief... really.

Three months without any real idea either way is a long time to wait. I Have not really been able to work for months.
I realize that most people here are not doctors, but I find that real life experience is better than years of school, and I see a wealth of real life experience.

Any thoughts?

 

[Nikki J]

Your symptoms are very worrisome. I do think you are owed a better explanation fron your neurologist. It is certainly true that sometimes the EMG is abnormal but not one that allows them to say yes or no to ALS and they have to follow you. This puts you in limbo which is a nasty place to be. This can happen even if you are seeing the most expert ALS specialist around.

Were you told if ALS is high on the list of possible diagnoses? Since you don't know a lot of details it is hard to say but I would give thought to getting another opinion from a neuromuscular ( ALS) specialist. Are you a vet? If you are and it is ALS a diagnosis gives you lots of benefits. If you are not but eligible for ssdi there is some benefit ( ssdi and medicare eligibility after 5 months)

 

[preacherman]

Hi,
Yes I am a vet (though not a war vet). 8 years in the army; got out just before the first gulf war. I haven't looked into any benefits, but there is a clinic near me and a VA hospital three hours away.
I have never really looked into the VA. Guess I have never really needed to.

The Neuro that performed the EMG is a neuromuscular specialist... (Neuropathy, ALS, and a couple of others listed... MG I think, etc.) I could tell that he did not like what was going on but he wouldn't give me any info at all... just kept telling me to talk to my Neuro, that she would have all the information.
He did do his own mini neuro exam though... couple of things I noticed about that was that my right leg shot straight out when he struck my knee, but my left knee just jerked a little. When he tapped my arm above the wrist on the right side a couple of muscles moved but when he hit the left nothing happened. he hit it a couple more times even harder and nothing. I could tell that he was bothered.
I also asked him to look at my tongue... he looked a while and said "Huh". I don't know what 'huh' means.

 

[Nikki J]

It is protocol for the EMG doctor to defer to the neuro who ordered the test but that persons owes you a full explanation. If it is ALS it is a 100 percent service connected disability. It does not matter whether you saw combat or served in war again if it is, there are many benefits and the military subforum has a great sticky post on them

You can get copies of your records and you may be able to learn a lot from youe EMG report and the neurologist's notes. did you have an office visit after the EMG or just speak by phone?

 

[Atsugi]

If, in fact, you are diagnosed with "probable ALS," ask that doctor to write a simple letter of diagnosis including the diagnosis code. Then find the Paralyzed Veterans of America rep at the VA and ask him to submit you for immediate and expedited 100% Service Connected, Permanent and Total Disability. Also ask Social Security to expedite your benefits under the TERI program.

Vets with "not bad" discharges who served 90 days active duty are eligible for VA benefits for ALS.


Stuck at the top of the "Veterans" subforum, you'll see a sticky post titled "Veterans." Print out the 10-page PDF file.

 

[preacherman]

You can get copies of your records and you may be able to learn a lot from youe EMG report and the neurologist's notes. did you have an office visit after the EMG or just speak by phone?

Just talked over the phone... wouldn't give me any info really; not what they are looking for, not what they think, nothing. Next visit with Neuro is Feb 22... a long time. Next EMG April 14..... a REALLY long time.
Maybe I'll try to get the record of the EMG... not sure how to go about that.

 

[preacherman]

Stuck at the top of the "Veterans" subforum, you'll see a sticky post titled "Veterans." Print out the 10-page PDF file.

Really good info. Thanks. I had no idea. This will help my wife feel better in case (as her and I both believe at this point) this is ALS.
Bad part is the thought that my time in the service may have been responsible for this.

Now all I need is to find out what is really wrong so that we can move on.

 

[Nikki J]

To get medical records you usually fill out a form. If the test was done in a hospital or a large medical office there is almost certainly a medical records department. If it is a big organization you may be able to download a form from their website If it is a small office ask the receptionist. If it is inconvenient to go there to pick up a form and you can't get it online or faxed a letter should do it. Ask what needs to be in it. Usually full name, dob, medical record number or social security and specifics on what you want such as EMG report and ( if there was one) consult note on x date and your signature. They are allowed to charge you for labor/ expenses but for a few pages should not be much

 

[lgelb]

Yes, and ask specifically for your chart notes and the full EMG and fluoro reports. Whatever you have, you owe it to yourself to keep it all together, always keeping a complete copy, because unfortunately you cannot rely on anyone else to do that.

The good news is that if you do have MND, it is progressing slowly. I think there may be other possible dx from what you have said so far, but the records should provide more info.

Best,
Laurie

 

[preacherman]

One quick update. I found the Fluoroscopy report in my online records:

XRAY VIDEO SWALLOW WITH FLUORO
01/13/2016 14:53:00
INDICATION: Dysphagia, unspecified dysphagia

EXAM:
FINDINGS: Procedure performed with Speech Pathology.

Satisfactory swallowing when drinking thin liquid from a cup.

Satisfactory swallowing with pudding and diced fruit consistencies. No laryngeal penetration.

No laryngeal penetration when swallowing cracker consistency, however some residual remained in vallecula. When patient took additional thin liquid to wash out residual, minimal laryngeal penetration occurred.

Patient was able to swallow a barium pill without difficulty.

.................

Then the Neuro's notes:

I received the results of your swallowing test which looked pretty good. Please be sure to follow the speech therapist recommendations listed below:

Diet textures: regular solids as tolerated and thin liquids
Feeding: self feed
Positioning: sitting upright 90 degrees
Swallow strategies: dry swallow after each bite, alternate solids and liquids and eat and drink slowly
Medications: may take with water and per patient preference
Problems signs to watch for: throat clearing, coughing, choking and pneumonia

Sincerely,
xxxxxxxxxxxxxxxxxx

Not much info I know, but at least it tells me that they at least believe that there is some sort of problem... I always get the idea they think everyone is a hypochondriac. I especially thought that when the CT, MRI, EEG, etc were clean.
Anyway, since this is available on my online records I don't know why the EMG report is not...
I sent the form to the hospital requesting the full EMG report and the chart notes. Guess I'll see where that goes.

 

[preacherman]

Update:
Careful what you look for I guess....
Still no EMG results, but the Dr. called me Wednesday and asked if I could come in and meet with them Thursday afternoon.
The Neuro I have been seeing specializes in Parkinson's and the like so she is basically not overly familiar with the intricacies of ALS/MND. The purpose of the initial EMG was to check for Neuropathy, which was her initial thought.
She told me that, based on the nerve conduction study, the problem was not likely to be any sort of neuropathy. Unfortunantly the EMG showed many inconsistancies which leads the EMG Neuro (whom specializes in ALS, and other neuromuscular disorders) to be concerned that there is strong evidence to support MND.
Based on that finding They scheduled two days of testing on Feb 22-23 that will consist of lumbar puncture, another MRI and EEG (had both MRI and EEG about 6 months ago... both clean), lots of additional blood work such as Lyme, DNA, etc. (already checked glucose, vitamines, thyroid, etc.).
After that, a consult with the EMG/neuromuscular specialist on April 20. Then another EMG later in the afternoon.
Guess it will be a long couple of months.
Resting on Romans 8:28

 

[Atsugi]

A few thoughts, preacherman:
- Not necessarily ALS. It is just one of many possibilities.
- If weakness worsens and you need equipment, the VA would be free of cost as long as a VA doctor prescribes it.
- Stay in touch here.

 

[KimT]

Preacherman,
You're in my prayers.
PM me if you'd like a prayer partner.

 

[preacherman]

Just a quick update:
I still have not recieved my EMG report but I did pick up a little information along the way.
My left ankle has been bothering me for probably 6 weeks or more... kind of hurts to walk on, then aches at night after walking a lot during the day. While I was at the neuro's office I casually asked her about it and she said to seed my PCP..... OK, but not right now.

We (my son) has had a big motel job (carpeting) and he needed help. I've been working with him on it for a little bit, but I can only last about 5 hours and be of any use. Anyway, all this work has made my ankle REALLY start to bother me... can hardly walk at the end of the day, and my posture is really starting to make other things hurt, such as my hip.
Finally I am studying my ankle one night and comparing it to the other while standing, and I see that it is clearly crooked as opposed to the right side. It kind of trys to turn out and twist out... like it can't support my weight.
Ok, so I went to the PCP. They x-rayed it and found nothing though she did confirm that it was definatly crooked as opposed to the right one. She gave me an ankle support brace, told me to stay off of it and referred me to a podiatrist.

No big surprises there really; though while I was there she asked about what else has been going on and I kind of explained things best I could. She asked me for permission to see my records (Neuroligst is from another medical facility) so she was able to access the Neuro's notes. We both read through them and I noted a few key items with the EMG... no specifics since these were not the EMG doctors notes, but the regular Neuro's notes regarding the EMG findings.

"Active denervation; Chronic denervation; fasciculation potentials; an intermittent tremor in several muscles. Felt to be sugestive of MND but not diagnostic of MND. Recomend retesting in 3 months."

Not much I know, but I am going to see the regular Neuro on monday for some stuff like the Lumbar Puncture, etc.
Any thoughts?
Any questions I might ask her?

 

[Atsugi]

Preacherman, are you using VA or civilian doctors? Tricare? Medicare?

We used both. The VA is good for free stuff--lots of it--and the civilian doctors are much faster. If you're not registered with the local VA clinic, you should.