Muscle wasting?

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OregonGirl

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Greeting all! Just a quick post as I need some support.

I posted last fall regarding my symptoms and test results.....

https://www.alsforums.com/forum/do-i-have-als-als/30480-insight-appreciated.html

Sine then I have found a neurologist I really really like. Saw him December 1 and he said " I would not even put you in the possible ALS category". He scheduled a follow up February 19th.

Right after my appointment the pain I am experiencing in legs and left hand started to spread to arms and a slight bit to my right hand. It now consists of cramping as well as sharp pains and the dull aches that have been here since the start of all of this. The twitches are spreading too.

Being the truly caring doc he is, he fit me in for an appt January 13th. At the appt all the office tests again - strength, Babinskis, Hoffmans etc. except for brisk bi-lateral reflexes - were normal. He then did acknowledge the muscle loss in my left hand thenar area. It have been watching my hand get smaller for months. He told me not to worry, that he would let me know when to worry (easier said than done).

He ordered a spinal tap and a total body Evoked Sensory Potential test that were done two days later - all test came back normal. When his assistant called to tell me the "great news" I thanked her, hung up the phone and lost it, I mean uncontrollable sobbing and the overwhelming sense of just wanting to just die now. People - even my own family - just don't get to - how can I be sad about normal tests......but you all know how that relates to ALS.

He set up more EMG testing for Feb 15th. This will be 7 months post foot drop (that did get better BTW) after my shoulder surgery July 13th with the twitching that started about August 1st.

I am a mental mess and can hardly keep it together. My husband was scheduled to go back to work (he took a job 3 hours away 8/14) first week of February but was granted another "detail" to keep him at home - thank god. We are struggling with what to do after this detail is very if I still have no diagnosis and continue to get worse. Live in VERY small area and job opportunities are few an far between.

Anyway I know no one here can give me a diagnosis and I really am trying not to bother anyone who is diagnosed or has a loved one affected by ALS/PLS etc. I am just as such a loss. Thanks
 
Re: Insight appreciated

HI, OregonGirl. It's very good that you included so many details, because that makes it possible to come to a firm, solid answer. Of course, I can't diagnosis what you have, but I can absolutely tell you what you don't have.

You don't have ALS.

That's a pretty bold statement, I know. We try to avoid prognosticating the future. But in your case, it's really solid.

So now I'll let you take a few minutes to ready our sticky post titled "Read Before Posting..." which is stuck at the top of this subforum. While you're reading that, I'll compose a detailed response to your worries and be back in a few minutes.
 
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Re: Insight appreciated

Thanks Mike - Read those way back when. Maybe I really did not process them so will read again.

It's tough not to have fear and loathing for the unknown......especially when I see and feel those twitches and buzzes all over and specifically in the hand muscles that are getting smaller and increasing in pain/cramping. When my legs are so tight and hurt so bad some days that it is hard to move but no doctor can give me either pain relief (tried so many pills now my head is spinning - only at night as I can't function on them if I take during the day) or an answer.

Probably sounds pretty selfish to many of you, but having never been really ill or at such a loss for what is happening it is hard not to just want answers. Have spent my whole life trying to help others, being selfless - never thought I would be so focused on my well being or my life in general.

I guess it is human nature - at least in my nature - to try and find that answer if no one else can. Thanks
 
OK, here goes.

Your age and activity do put you in the profile. Your occupational environment, beautiful nature, subjects you to many possibilities.

Numbness in leg with crawling sensation for many years on and off <> ALS never turns on and off, it just gets worse.

really itchy, three fingers on left hand froze up beginning of July <> ALS isn’t itchy.

tingling across back occasionally when I bend head down <> Tingling does not point to ALS at all.

Wake up with numb hands/fingers <> Limbs and digits do not get numb in ALS.

Great recovery from surgery!

8/3/15, could not lift my right foot off ground <> This is very worrying. Could be many things, though.

8/7 Neurosurgeon…suspect peroneal nerve damage done during surgery <> Sounds right.

very slight heavy feeling in thigh <> ALS does not feel heavy.

Heel would scuff (no longer does this) <> Again, if it were ALS, it would never get better.

severe pain when I walk or stand <> ALS does not present with severe pain.

sensation of something crawling <> Perhaps muscles are “worms crawling” under the skin? This could be some other stuff, much more common than ALS. Don’t look at rare ALS because you have common symptoms.

quad muscle does not "engage" without me willing it to <> In ALS, your “will” doesn’t matter. When ALS weakens a muscle, there is no amount of will that can make it engage.

Left hand severe pain <> A muscle affected by ALS does not hurt at all.

muscle twitching in both calves…progressed to all over my body <> There are lots of reasons for twitching. Twitching is so common is it not diagnostic. Healthy people can twitch.

8/14 Diagnosed after EMG and NCS on right leg as foot drop caused by damaged peroneal nerve. <> I believe it. In fact, this is probably your problem, not ALS.

this muscle would not even move…is improving <> You know by now that ALS never improves.

8/21 - Go see shoulder surgeon and he is thrilled with shoulder. But I start to explain other symptoms and he refers me to neurologist. <> Makes sense.

frequency and urgency of urination <> Not connected to ALS.

catching my feet on things <> This is a problem. Many other, more common causes.

Spatial awareness is off <> ALS does not affect spatial awareness.

burning in feet and tingling in hands and feet <> In ALS, you don’t feel burning or tingling or any thing at all—the muscle just won’t move. It lays limp and useless—paralyzed—and will not contract.

Neurologist said it was probably BFS. <> I have no doubt this neurologist is correct.

muscles feel stiff <> Muscles don’t feel stiff because of ALS.

10/5 - EMG clean other than muscle affected by peroneal injury <> There you go. The EMG is the gold standard test by which ALS can be viewed. If the EMG doesn’t see ALS, you don’t have ALS.

need to clear my throat <> has nothing to do with ALS. If your tongue was paralyzed, that would bother me. So look in the mirror, move your tongue up, down, left, right. You don’t have ALS.

MRI results - have some nonspecific lesions… suggestive of MS. <> There are often lesions in a healthy brain, too.

Neurologist says MRI non conclusive for anything. <> This does not impact a diagnosis of ALS or no-ALS.

bilateral hyperreflexia in legs <> Just one indicator. Some people just have hyper reflexes. Or it could be several other problems.

fasciulations on my tongue <> Not necessarily ALS.

He mentions ALS <> I personally think it was irresponsible of him to suggest “you might be dying” when he has no proof of it.

October at MAYO: EMG of muscle associated with right foot drop which is resolving so she attributes to initial diagnosis of peroneal nerve injury <> Sounds right. Not ALS.

lost 20 lbs <> Not ALS.

NOT A HYPOCHONDRIAC <> I agree.

Mayo did say she cannot rule out the beginning of a MND but at this time there are no clinical findings. <> That’s a standard weasel statement. She can’t rule out that you’ll get malaria or beri beri, either.

New neurologist said: “I would not even put you in the possible ALS category". <> I agree.

more EMG testing for Feb 15th <> Well, he’s testing you, but he’s not testing you for ALS.

I think that’s about it.

My advice: Ask your GP medical doctor to prescribe something to reduce your fears/anxiety. Continue to work to find a diagnosis. But you need to really put ALS out of your mind forever, because every minute you think about the wrong diagnosis is another minute you’re not looking for the real problem.

You should definitely stay away from ALS websites, especially this one, because it just adds to your worries.
 
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OG I can't see ALS in anything you describe.

I truly hope they can pin the issue with you and treat it, there is obviously something going on, I don't doubt that. I also know that the path to diagnosis of anything neurological can take time and it's frustrating.
 
I'm kind of confused. You say the peroneal nerve injury is caused by rotator cuff surgery. Your rotator cuff is in your shoulder. in order to damage the peroneal nerve the surgeon would have to have missed by 3 1/2 feet. So to my thinking the two are not related in any way.
Vincent
 
OG,

I read your post very carefully. I can say, with confidence supported by what you posted, that you do NOT have ALS. I'm glad you're getting more tests to get to the bottom of what you do have. In the meantime, get to your GP and see if she/he can prescribe something for anxiety.
 
Hi Vincent!

July 13th - I was fine as frog hair
July 14th - I had surgery, was in oxcodone fog for three days ,
July 16th - I decided I had enough of that and switched to advil and ice
July 17th - I mentioned to my husband my right side felt weak.
July 20th - I resumed my one hour a day hike with dogs and notice foot slap.......

Then to GP, had MRI to rule ot c4/c5 involvement

To NeuroSURGEON who read MRI and sent me to Neurologist 1 for EMG/NCS. Back to NeuroSURGEON who agreed with Neurologist 1 diagnosis that I had never damage over fibular head. This diagnosis was given August 14th. By then I had twitching in calves which has now spread to whole body.

No doctor has said it is a direct result of surgery but they deduce it was a positioning thing during or after surgery (Neurologist 2 - in Oregon and Neurologist 3 - at Mayo in MN).

Neurologist 4 who I am seeing now and whom I really respect says he doubts the drop foot (which is better) was anything even indirectly associated with surgery. He is puzzled by it. He does think there was nerve damage but does not necessarily think it was due to a physical type injury. Meanwhile I can now lift my toe, foot and walk on my heel so the foot drop is considered cured.

I continue to twitch which is spreading, continue to have pain and stiffness and now cramping - which is also spreading. My left thenar muscle is shrinking (As noticed by Neurologist 4). Am now hyper-reflexive (which was not my baseline when I started this trip) and I have "overtoned" muscles according to the physiologist at the Mayo. Fingers and toes locking up.
EMGs have all been normal EXCEPT the muscle associated with the foot drop. No clinical weakness. No tripping. I have noticed dropping things recently- not heavy things but small light things. Maybe just noticing I am clumsier than I thought I was?

Hopefully EMG on the 15th will give us some clues/answers. I am miserable/scared/frustrated.........

I know without a diagnosis I am more of a bother to all of you than anything. Been trying to stay positive, live my life etc. But the new "normal" for me is so outside of anything I have EVER experienced. This is from a gal who lived (and I mean lived - backpacking-hiking, fly fishing, snowshoeing, mt biking, moving hay bales, saddling my horse, passing the arduous pack test for wildland firefighting, volunteering for a non-profit in addition to a rather physical job etc etc) with a torn rotator cuff for three years and never missed a beat. I know what normal muscle pain is, I know when I have overdone it, this is different and so scary.

Whatever the hell I have is way out of my league to endure. I am in awe of all of you. I am not the strong courageous person I thought I was.
 
Thanks Kim. I am trying Valium at night so I can sleep through the pain (which has been an issue too). Although the pain is still there all day.

I need something for anxiety that will actually let me function while awake.

Although I do agree I am experiencing anxiety (oh boy am I ;-)) - it is not for anxiety's sake!

There is something wrong with me - Many neurologists have found "the little things" although the things are not pointing them to a diagnosis right now.

Although ALS may not be the something, I feel not knowing what it is causing such a drastic change to your quality of life in just over 6 months would make anyone prone to anxiety.

I have gone 47 years and dealt with lots of things that have never affected my life like this.

I am - like I said above - in AWE of everyone here who does have a diagnosis or a love done with a diagnosis and can remain so positive and go on with the positive attitudes I see here.

Maybe if/when I am forced to face whatever it is, when there is a name on it I can better deal with it. Oh God the unknown is enough to drive you crazy.....

But I get up, put on my face and get on with it everyday. Luckily my husband is my rock who let's me have my weekly "come aparts" and reminds me he is here for the long haul no matter what we are dealing with.

Neurology, what a weird science. I am a scientist, but one who likes the tangible.......
 
There is something definitely wrong with you.
It's just not ALS.

I sympathize, and I'm sure that everyone who has answered you also has a great deal of sympathy for your pain and your anguish.

But now I have to point out a sad fact. There are over a hundred people active on this site with an incurable fatal disease that paralyzes their whole body over a period of years until they die. Caring for them is very expensive, difficult, and most of all, tiring, as it is s 24 hour job, ensuring that someone else's body goes through the minimum motions to ward off pain and swelling and fear, feeding them, clearing their lungs, and sometimes, lubricating their eyes.

In other words, I can't in good conscience allow you to take up any more time. I suggest that, while you're waiting for your next EMG, you go online to get emotional support from a group that specializes in treating anxiety.

Good luck.
 
Oregon, your sx, as you know, resemble various things, from MS to immune-mediated neuropathy, to UMN disease. I don't know what your EMGs have shown or suggested, but it doesn't sound like your local medical network is doing the full job. So I'd get myself to Portland (OHSU) to the neuromuscular center, and get diagnosed.

Best,
Laurie
 
Hi Laurie -

EMGs to date all normal/clean.

I've seen three neurologists, (4 if you count one who did emg/ncs to diagnose peripheral nerve damage in August, 5 if you count Neurosurgeon I was first referred to for foot drop) I have had many tests - extensive blood work twice, MRIs (brain, cervical spine, lower back), three EMGs, three NCS, two Sensory Evoked Potentials, swallow studies, exam by physiologist, spinal tap and the clinical office exams. I am not sure what more they can test for at this point. Muscle biopsy?

More EMG studies 2/15.

My current neurologist is a great guy and I trust him to do what is needed. While undergoing my last SEP study the gal doing it raved about him. After I was referred to him I spoke with the locals ALS Society and they recommended him as the "go to guy" for possible ALS and other neurologic diseases.

I'm tired of pushing doctors to tell me what is wrong and getting no answers, tired of worrying. Perhaps that is why I turned back to this group. Just fro support, not for answers. I am sorry if i have taken time away from all of you as I know how precious it is.

Oh and just a funny (not). I applied for long term care insurance through a program at work. While I have no diagnosis and keep getting NORMAL test results and many of the folks who have responded to my posts think I am going to be fine, I was denied insurance due to my recent medical history. Funny in a frustrating sort of way.....

Maybe anyone else can send me a message with any insight or suggestions so I do not take up anyone else's time - do not want to tread on toes here....
Thank you sincerely.
 
OG,

The twitching can be caused by stress. You said you went to Mayo. Then you went to another neuro?
Your symptoms are not consistent with ALS. Foot drop doesn't get better with ALS. There is no constant pain with ALS.

I understand your quality of life has diminished. Do what Laurie suggests and put this to rest once and for all.

Anxiety has a snowball effect. Something is wrong, then you get anxious. Then the anxiety leads to more symptoms or makes existing symptoms worse and even creates new ones. Then more anxiety. You get it. You're a smart person.

I'm trying to give you both empathy and reassurance.
 
I wonder with the balance/ear issue, sensory issues if you have a virus. We had a friend who basically lost feeling in one side of his body, had really bad vertigo, seemed to be losing his vision. After many weeks, 10 to be exact, they released him and said his virus was gone. Viruses can do weird things and many of your symptoms seem to be down nerve paths.
 
Greetings again. Just an update - more confusion really.

First EMG/NCS to determine cause of foot drop in August indicated nerve injury at fibular head.

Both October 5th and October 23rd EMG and NCS that showed all was well (except that pesky Peroneal Nerve (R) at fibular head and Tibialis Anterior (R) and Peroneous longus (R)). All were tests made Drs conclude abnormalities and foot drop due to nerve injury over fibular head.

So this is my first abnormal EMG - again the injury is getting better and the foot drop is no longer even noticeable to me, can lift foot, toe, getting strength back. All Drs and everyone here agree this is NOT something that happens with ALS. I have no doubt about that.

Onto my left hand.

Both the October 5th and October 23rd EMG/NCS looked at my First Dorsal Inreosseous muscle and all was normal. Same with the NCS of my Ulnar nerve feeding the muscle. No slowing or sign of nerve injury.

February 15th - yesterday's EMG/NCS. Doing the NCS, Dr noted slowing of the signal down the Ulnar nerve at the elbow. Did more NCS and was pretty confident that is what he saw. When he stuck that needle in my First Dorsal Interosseous it was all quiet at rest, but as soon as I started to move it it became clear something sounded different. In my Abductor Digiti Minimi as well. He mentioned "Sharp angles" and an injury to the ulnar nerve.

All the other muscles he tested in the arm (forearm and bicep) had normal EMG readings. He also did NCS and EMG on left leg and said other than noting a few fasciculations it was text book normal.

After reviewing my old studies he came back in and actually said he was more confident I DID NOT have MND after seeing that. He said he is really looking hard to find ALS, that is his job. Noted not seeing anything active and he could not say when the injury to my left ulnar nerve happened only that it looked old based on EMG.

I however am of course wondering how I went from all normal EMG in the hand that hurts and shows my muscles decreasing in size to now having abnormal EMG and it makes him happier?

Anyway I am going to look for another opinion as Laurie suggested. I am so confused and can't wrap my head around any of this. I have read several post where the first diagnosis was Ulnar nerve injury only to be diagnosed ALS down the road. If I did not have brisk reflexes, stiff leg muscles, fasciculations all over my body and spreading I guess I would be more confident with the ulnar nerve injury conclusion. It all just seems a little too coincidental to me.

Thanks all and have a great week.

~OG
 
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