Back Again. Swallowing, Twitching, Atrophy

[Flashster]

Hi All,

A while ago I posted some concerns about my swallowing problems, and then twitching.

Last year I started to have swallowing issues with solids, which have not gone away. Swallowing study was not conclusive as I did not proceed past the liquids. First EMG showed fasiculations in lower limbs, but nothing else. Second EMG 3 months later had some "minimal neuropathic changes" with fasiculations.

Things have remained the same on the swallowing (unable to swallow solids), and the fasiculations have increased particularly in my lower limbs (feels like worms under the skin in my left lower leg continually), but are present at times in all sorts of areas. I get cramps in my feet regularly. Symptoms started around 12 months ago, though I had terrible leg cramps occassionally in the night before this time. The only positive test so far has been Voltage Gated Potassium which was at a level of 115 (threshold is 100 I believe).

All seemed to point to a Cramp Fasiculation Syndrome (?), but this week I/we noticed that my right calf muscle area is noticeably smaller than my left.

I have some weakness but I'm put that down to being thin from not eating. I am still able to walk, even if a bit unsteady.

I've had two emg's over the past 12 months, the last one in March. Apart from confirming the fasiculations, I was told nothing significant was shown.

Upon noticing the apparent atrophy(?) I looked at the details of this emg and see some readings on the "right Tibialis-FHB Anterior" and "Right Gastroc (med)" that don't say "normal" as the other readings do.

On the Needle EMG section it says

Right Tibialis Anterior: "Mild Inactive Neur.." Fasics is "+" Dur is "+" Amp is "+".
Right Gastroc (med): "Mild Inactive Neur.." Fasics is "+" Dur is "+" Amp is "+".
Left Gastroc (med): Fasics is "+"
Right Cervial PSP: "Mild Inactive Neur.." Fasics is "+" Dur is "++" Amp is "+".

There are loads of other readings there for Repetitive Nerve Stimulation tests etc.

The note form the Doctor doing it says there were "minimal neurolopathic changes" in Right Tibialis and Right Gastroc "but other extensive examination carried out including cervial and lumbar paraspinal muscles and genioglossus did not reveal any significant abnormalities".

He goes on to say "There is no support for motor neurone disease or a myopathy. Also there are no features of a peripheral neuropathy, myasthenia gravis, ocular myasthenia or myasthenic syndrome"

I've alerted them to my recent finding which seems to have been missed. I wonder if anyone could offer any advice on this. My initial concerns were ALS, which the initial tests seem to have ruled out. I wonder however if a beast is slowly revealing itself.

I'd be most grateful for any advice.

 

[Alyoop]

I am sorry I don't understand the comment
" about alerting them to the recent findings that have been missed"
Are you referring to the EMG or the new atrophy?

 

[jamiem]

I like you am waiting for more symptoms to be revealed to substantiate and ALS diagnosis. I have been diagnosed with Pseudo Bulbar Palsy. I am losing my ability to speak, have begun choking, difficulty swallowing and some breathing difficulties with 1 negative EMG. I will have the second EMG in late August. My point being, ALS is a diagnosis of last resort and not easy to diagnose according to my neurologist. I am sorry you are here but together we will learn patience and learn to live each day at a time. Good luck and prayers to you.

 

[Flashster]

I was referring to the new atrophy when saying I have alerted them. They have asked me to measure my calf muscle and there is a 1.5cm difference although to the eye it looks more.

Is it normal to be diagnosed with Pseudo Bulbar Palsy with a negative EMG?
The impression I get from my Neurologist is that he would not diagnose anything without a positive test.

 

[jamiem]

I am seeing an ALS specialist in Dallas. I guess he thinks so. He thinks ALS will show up in the next EMG. My mother died of ALS and so did my aunt, so I am genetically loaded. My experience is that ALS is illusive and sometime slow to show up as true ALS. Please take care of yourself. I know this is emotionally draining. Jamiem

 

[dberbicegirl]

I know it is difficult to be patient, but if you do not it will make things worse for you. I can identify with anxiety since my brother was diagnosed and refuses to confront the truth. Do you believe in prayer? Have faith and leave it your neurologist.

 

[Toto's Dorothy]

Flashster,

Type your E M G notes to Wright. He's a professor and our re si dent e val u a tor when it comes to E M G's. He may be on vacation or tea ching for the summer. Give him a couple of days to reply. And by the way, no one body is symmetrical.

 

[Alyoop]

Your Doctor has lookes at and evaluated your EMG results.....Mild chaneges, not consistant with ALS
Rejoice, stop worrying about everything. A 1.5 cm difference between limbs is quite normal. The more you look at and examine the size of your muscles, the more differences you will notice. Just stop doing it.

 

[Flashster]

jamiem - are you saying this sounds as though it could be als?

 

[Danijela]

"They have asked me to measure my calf muscle and there is a 1.5cm difference although to the eye it looks more." Who exactly are "they"? Did you tell them about this apparent atrophy? What did they (assuming your neurologist/consultant) say? If ythey are concerned they would be ordering more tests. Jamiem can not give you a diagnosis.

 

[notme]

jamiem - are you saying this sounds as though it could be als?

I believe they were relating their own experiences in the diagn optic process. As Aly said, most have a variance in limb size. A doctor should have never told you to measure your limbs...that is their job is they feel it is necessary.

No one here can say you have ALS. The fact that your EMG has been relatively normal suggests ALS is not the problem.

Work with your doctors and try not to stress out over your symptoms, as that will only make symptoms worse.

Good luck to you.

 

[Flashster]

Danijela - "they" meaning my neurologist. He said he'd use it as a baseline to analyse if there is any atrophy at my next appointment.

 

[patricia1]

Did you ask Wright about your emg
Why don't you ask your neurologist to go over all of the emg
You will and never should be told you have als on this forum .
Most of us waited years to be diagnosed .Some are still on the fence
ALS is a prcess of elimination and waiting for more evidence pointing to or away from als.
The best of the best neurologist find it one of the hardest diagnosed to give .

Continue with your doctors .If you aren't happy go to another .
But please don't expect a diagnosis here

We are great listeners supporters and advisers.

I hope you get some answers

Patricia

 

[Flashster]

I guess I was hoping for a "you don't have it, go away", not a diagnosis. I am dreading the appointment this week with my neuro. People have continually told me for the last year I don't have it, but now it seems to me hard to ignore the obvious signs. From the knees downwards I have continual fasciulations in all small muscles and my balance isn't very good now either.

My speech is ok though even though my swallowing has been bad for a year. So maybe there is some hope its something else.

I didn't send my emg results to Wright yet as I'm being a little "head in the sand" about it all at the moment.

 

[Alyoop]

You don't have it..........go away.

Personally I don't like to be that blunt, but if you insist