Desperate

[SidVicious]

An update. This is going to be long. Please*bear with me. And thank you for reading in advance.

(to prevent confusion, if you want, you can view my previous thread 'What is a clean EMG in layman's term'. for my complete history. Thanks)


So after my abnormal first EMG last May 6 (no offense meant to the old timers, but the same was done by a 75 yr old neuro, who my new neuro thinks is no longer competent since his findings contradicted my first neuros impression. He said he doesn't understand how my first neuro could come up with such interpretation. My new neuro is an ALS expert and is one of the best neuro-muscle disorder specialist in the country. He is also of middle age.

He ordered several tests and re-tests ( routine EMG-NCV (all four limbs and tounge), single fiber EMG, RNSS, SSEP, BAER, VEP, blood tests, MRI with contrast of brain and thoracic spine. Since the only abnormality he found was the Somatosensory Evoked Potential (SSEP) of my left leg (the speed on my left leg is at 52miliseconds, which is much slower than *the normal of 40 miliseconds) which he thought would suggest demyelination. So he ordered the thoracic MRI, but after the normal thoracic MRI (no demyelination), his theory of abnormal SSEP due to demyelination was debunked.
And once again, I'm in limbo land. Its so frustrating.

After my first EMG last May 6, 2010, almost all of my SENSORY symptoms went away. Like magic.
In exchange, my MOTOR symptoms, started.*

What scares me is the PROGRESSIVE ATROPHY and FASCICULATIONS (though the fascics all over my body, significantly lessened the last few weeks, I'm not sure if that's good)*that*appeared/continued to progress.*


Here's*the chronological appearance of such scary atrophy:

- By the time of the onset of all my symptoms (feb 26), my thenar muscle (bottom part of thumb, palm side) itched and little atrophy followed. *

- Right after the first EMG (May 6) when I freaked out due to the results, i noticed atrophy on my butt, which felt like the bones on my butt can feel the hard surface where i'm sitting ; both palms (center and thenar part) thinned ; both my foot pads/soles, thinned, to the extent that i can feel the floor so much more, it's uncomfortable ; the normal dents on my elbows and knees deepened, it became very obvious (doc said, there's no muscle on such dents on my elbows and knees. . . So what atrophied then? My ligaments?) *; My back became more bony ( I think ) ; My fingers (palm side) continued to wrinkle ;

- The tissue/flap like, that stretches when we open our mouth (just beside our tonsils) atrophied i think, because it bacame red and swallowing felt rough, as if there's a lump. I have no speech problems though. Up to present, the rough/lump on throat feeling is still present, fortunately the atrophy on the flap-like tissue didn't seem to progress. Roof of mouth and tounge feels dry/raw/atrophied. Dry mouth feeling (feels like after taking Gabapentin). At the onset of all my symptoms (feb. *26), the edge of my tounge tingled for several weeks, with all of my teeth becoming sensitive overnight. Saliva felt like it became more frothy. Joint pains from time to time. **

- May 29 - Felt a weird sensation on a small part on my left leg (gastrocnemius i think) (like the SKIN is being stretched/numbed), then voila, a dent on the said part appeared right after, it's scary. I can feel some sensation then atrophy would follow. What could freaking cause that?!

- More recently, a part of my right forearm (extensor digitorum i think) hurts (muscle like pain), then just a few days, I can feel a dent at the said spot.

Also, now I have atrophy dents on the inner side of my left thigh (near the hamstring i think). . .

- Atrophy on both of my palms (thenar and center) which happened so fast seemed to have stopped though. But I can see small dents on my fingers which weren't there when my thenar and center part of my palms were thinning. . . which leads me to think that the atrophy on my thenar and center palm may have stopped but it sure is progressing in another part of my body (which really bothers me).

- My arms, legs, thighs, hands, feet, butt (used to be firm, is now soft and a lot thinner), trunk and back all seemed to have become thinner/more bony.

(I check myself every now and then for new atrophy. I'm scared that my chest muscles may be atrophying already without me knowing it and I would just have a hard time breathing)*

- I have body-wide atrophy with NO weakness, wherever, except for occasional cramps/muscle pain when I over exert. Joint pains on all joints, neck and spine pain, from time to time.

- If I only have a single dent on my body/hands, I wouldn't be as concerned. But mine is body-wide, and progressed so much in such a short span of time.

- Doc said he *

Questions:

Wright, and all the other good folks out there:
*
Is this ALS? Other type of MND? If not, what could possibly cause my symptoms and such RAPID (sensory symptoms/thenar atrophy started Feb 26, full motor symptoms started May 6) *and WIDE SPREAD atrophy?

About the pattern of my atrophy, does it coincide with the LOCATION/PATTERN of ALS / MND / PMA atrophy? Or atrophy pattern of other diseases? Does Multiple Sclerosis cause rapid, wide spread atrophy? It's doubtful.

Anyone with the same symptoms?

My whole body is atrophying little by little and still no answer. I'm scared up until when I can put up with this. I want to know what it is so that I can treat it, if such is treatable. I'm afraid it might be too late if I don't act right away.

I am losing hope if I will be able to find out what's causing this.

(results all normal except for the slow SSEP on left leg)

Thanks for any reply.

 

[AndyDJX]

Wow, Sid. That sounds intense, and certainly scary. Sorry you're going through all of this. This obviously doesn't sound like an easy case (not surprising news to you I'm sure) and I'm no doctor. For what it's worth, it certainly doesn't seem like typical ALS at all; I would think you'd have significant weakness and an EMG that indicated motor neuron disease. But you don't, so that's good news.

Perhaps other folks on here will be more helpful. If I were you I'd say keep following up with your doctors and see what they think. It sounds more like a neuropathy than ALS.

 

[wright]

Hello Sid

If you don't have any weakness, then you don't have ALS. If you don't have any weakness, then the "atrophy" you are describing is not muscle atrophy . . . and ESPECIALLY not muscle atrophy due to ALS. The other reason you don't have ALS is because you have a clean EMG . . . and that clean EMG confirms that your "atrophy" is not muscle atrophy.

ALS is a slow, insidious disease that sneaks-up on you. By the time you notice any symptoms, the disease has been progressing for some time and the EMG would be dirty . . . and it would certainly be dirty if you have muscle atrophy. You don't have muscle atrophy . . . that has been confirmed clinically and electrophysiologically. I'm wondering why you would question an ALS specialist. Are you under the impression that you know more than them? If so, you are clearly not thinking rationally.

This is what you have told us in a nutshell:

You no longer have sensory symptoms.
You have "atrophy" with a clean EMG.
You have no weakness.
All of your tests are normal.
You twitch (who doesn't).

Put all of that together and it seems to me that you don't have too much to worry about. If you still feel there is something going on (and I hope you don't think it's ALS . . . because it isn't given what you have told us), then go get another opinion or go see a rheumatologist, because if something is going on with you, it's probably autoimmune in nature but it sure doesn't sound life-threatening.

I wish you peace.

P.S. I just noticed that Andy said it could be a neuropathy: It can't be a neuropathy because the EMG was clean. I thought it was important to mention that (I certainly wasn't saying it to step on your feet, Andy).

 

[halfin]

Anxiety can reduce your appetite, which can produce weight loss (fat loss). That could account for some of the changes you are seeing. Is your belt fitting tighter lately?

 

[Northern Dancer]

Sid,

As you said, you freaked out at some point. Freaking out and all it implies can have a very negative impact on a body. Constantly scanning your body for dents is in itself a form of pathology. Perhaps most people have these dents. Searching for them is taking over your life.

No amount of testing is going to give you want you want. Try to speak to a counselor to try to make sense of what the real problem is.

May you find peace.

ND

 

[SidVicious]

Andy, Hal - thanks for the insights. I always read your posts and they are all much appreciated. Hal, after i noticed that i am becoming thinner/smaller, i binged on everything fatty. I gained 2 pounds but elbows, knees, back, knuckles are all still bony.

ND - yeah you are right, i do notice more dents now. But i am quite sure that the dents on my elbows and knees which suddenly DEEPENED are new. Very sure of that. Thanks for your advice. Much appreciated.

Wright, so you are saying that the 'atrophy' that i am seeing is not MUSCLE atrophy if i have no weakness and with a clean EMG? What could i have lost then? Especially on my knees, elbows, knuckles, shoulder blades? Ligaments? Tendons? My butt, thigh etc.., all became softer as opposed to being firmer before.. Same with both my thenar.. And 'sensation- then-all-of-a-sudden-dent' on my gastrocnemius.. What could have i lost? I don't think that flap near our tonsils is a ligament.. Its a muscle right. I really don't know. Pardon my ignorance.

Also, my previous neuro said (when the only one i have was the bad EMG) that I could have toxic polyneuropathy (which is why i raided the chemicals (e.g. shampoo, conditioner, alcohol, insectide..) , in my house to check for toxic substances) or some muscular dystrophy. Could Toxic Polyneuropathy and Muscular Dystrophy be seen on EMG?

Also you did say, it might be auto immune.. Like how? My joints/back/spine hurt at times.

And yep, if this idiopathic atrophy continues, I will definitely see a rheumatologist. **

Wright, as usual, you shed light and produce that calming effect on disturbed people like me. Sorry for bothering you again with my incessant queries. Bless your good soul.

Off topic:
I think you look like Steve Carrell of The Office and not that American Idol dude. *Steve's hilarious. One of my favorites.

Thanks guys, for all the replies.

 

[SidVicious]

And oh yeah i am convinced this is not ALS.. But something is definitely happening.. If i ever get to find out.. I hope its not too late..

 

[wright]

Not too late? Not too late for what?

Most of the places you mentioned contain no muscle at all (knees, elbow, knucles), just as your neuro told you. Did you think he was lying to you? If you did, may I ask why you thought he would lie to you?

Yes, polyneuropathy and muscular dystrophy would be detected by an EMG

I truly don't know what is going on with your body . . . if anything. You have told us things that simply cannot be, so I certainly can't form any type of opinion on your supposed condition.

I wish you peace in your journey.

 

[SidVicious]

Not too late in the sense that the 'atrophy' will not stop until you know what. The doc acknowledged that there was indeed a dent on my gastrocnemius and inner left thigh just after that weird sensation. He said he will take note of it, since he is stumped on why it is happening. It was the only thing that he can't explain. I guess my case is rather difficult.
I just pray to God that this atrophying stop and to let me live normal again. I have a 2 yr old daughter, a husband and an old mom. I'm supposed to take the bar this September and all of a sudden my life revolved around this illness.

Wright, thanks for replying but i still have a question that I wasn't able to ask my doc. I had marks on my right arm just a few weeks before Feb 26.

Would my EMG be normal if I acquired Lyme Disease? Would Lyme show on my EMG?

How about SLE/Lupus? Would Lupus make my EMG abnormal?

Thanks much

 

[JeanieB]

Hi Sid,
I'm new here but I came across your thread. A lot of what you are describing sounds very much like what I am experiencing as well as being a Mum and worrying about the consequences of all this.
I became aware of my symptoms April 2010, although when I look back I had some odd sensations before this - electric nerve pains from my ear to my shoulder and electrical feelings in my face and on my head.
April I went to see my G.P. as I felt twitching in my upper left arm and left leg and achiness in my legs and groin. I also felt fluttering sensations in my throat. I was very scared and immediately thought of MND. I asked him for antidepressants which is very unusual for me. I am generally a very together and healthy person.
10 years ago I had a 3 year episode of what neurologists eventually said was a benign fasciculation syndrome - I even had twitching in my throat then. Then nothing until April.
My G.P. said he didn't want to refer me on because of my history.
However 2 weeks later, the symptoms were continuing and affecting other areas so I asked could he refer me to a neuro. Neuro has examined me and I have had scans and EMG/ NCS. Waiting to see neuro again with results. When neuro examined me he said he didn't think this was MND but it was something. At EMG the doctor shared a little and said there was nothing indicating MND.
These are my symptoms:
I had some sensory symptoms - my left hand and left foot felt numb and tingly on and off for a few weeks. These were also the areas where I was getting most cramps and twitches. Sometims I can see the twitches and they flutter up and down, sometimes they are like a rippling under the skin and I don't always feel these.
I don't have the pins and needles much now.
Cramping on and off in many areas but particularly left arm, left leg and foot, face, throat, neck, buttocks (especially left) - they can be fleeting or can go on nearly all day and then leave that area feeling very achy for ages after.
Twitching/fluttering - face, arm,legs, buttocks, groin, feet - I can watch my toes move side to side when the sole of my foot is fluttering.
Atrophy - my buttocks are very uncomfortable when sitting - look smaller especially left
- my left hand especially looks slightly wasted near the bulk and on the back
- like you my feet - especially left- feel flat to the floor and uncomfortable
- I don't have dents but think my arms and legs look slightly different - muscle softer and veins visible that I don't remember before
My swallowing feels slightly effected when I take a drink of water - as if it wants to gurgle back up
My lips and tongue feel fluttery and sometimes I feel like i'm tripping on my words
No noticeable atrophy of tongue
I also jerk occasionally - hand/foot/leg/arm - wonder if this could be my tablets?
I think I have some weakness - my left hand hurts now when I pick up my mug, my shoulder hurts if I reach up, i feel a bit unsteady on my feet.
I have some tremor - mostly left hand but sometimes my legs
All my joints feel uncomfortable - sometimes I feel as if my knees are going to give way on me.
My elbows and knees like you feel different. What I have noticed is if I kneel down or lean on my elbows - I am left with marks/dents for hours before it returns to normal. this is also noticeable on my arms if I have been carrying a shopping bag even just from the shop to the car - the imprint stays for hours.
Sorry for rambling but share your concerns and I hope someone will see this and say this also doesn't sound like MND as it's very scary.
The antidepressants have helped me to cope much better and I have also started a high antioxidant diet as this is thought to be helpful in any autoimmune disease even MND.
Hope you are coping better.
Jean