Continuing to Slide

[Guest]

You explained this very well Thank you!

Looking back I had problems with my right foot well better than a year ago. Then I started noticing tightness in the calves and a feeling like I didn't have any legs under me in November 2010. I had been having tingling in my hands and feet for well better than a year.

My muscles felt stiff after exercise or even light exertion. I noticed loss of muscle tone and asymmetrical differences when fasics started in December. I felt my body explode in fatigue. Not to re-tell the entire progression it's in my prior posts. Just to say there seems to be a distal point of where this may have started. The fasics, stiffness and fatigue hit bilaterally in my calves and have progressed up both legs.
All limbs, hands and feet (and neck muscles) are now involved.

"Lead legs" every day (lead limbs for that matter).

How can muscles feel so stiff and tight yet be so soft, loss of tone, floppy?

Fatigued sore throat muscles and tongue.

Bodywide fatigue.

3 Clean EMG's and no clinical weakness. Getting worse...Odd?

Any further ideas would be appreciated but certainly not expected .....you all have been very kind. Thank you!

P.S. Has anybody experienced the hair falling out of the top of the foot? Mine fell out of the right and seem now to be falling out of the top of the left?

 

[Guest]

curtrill,

One of the things that I have been trying to point out to you since you have been here is that having all of your symptoms fit into a single diagnostic box might not be in the cards for you. Obviously, the diagnostic picture that your body presents to your doctors is very confusing; else, you would have had some type of diagnosis by now. And, if it has the experts confused, there's very little chance that we can give you any real help here.

Many of the "symptoms" you report and appear most concerned by are subjective in nature -- you "feel" something, and, apparently, the doctors can't find any clinical evidence to provide a reason for you to feel those things. Consider the possibility that you may be constructing some of these "feelings" in your head.

You see what you think is tissue atrophy and you expect to feel weakness. You have fasciculations and you look them on the Internet and discover to your horror that they are a symptom of a fatal disease called ALS. You look up ALS and you discover that other things like muscle cramps and muscle weakness are also symptoms of this disease.

And, now you've locked yourself into a closed loop -- every symptom that you discover that ALS has, you find in your body. Except for one thing -- you have to redefine precise clinical terms to claim these symptoms as your own.

Obviously, this unresolved situation is causing you a great deal of concern. Consider getting yourself some help in learning how to cope with both the uncertainty and the "losses" that you feel that you've had. Consider moving from a stance of the "What's the answer?" to one of "Is there any way we can treat the symptoms?"

A further note: one thing that will cause the hair to fall out of your feet is circulatory problems in your feet. One common cause of that type of circulatory problem is diabetes. Untreated diabetes can also lead to neuropathic conditions that cause sensory symptoms in your hands and feet, and the blood sugar swings can make you feel very strange (including listless and fatigued).

 

[Guest]

Thanks,

I'll admit that in December when I found those three letters while trying to understand what this popcorn popping look and feel in my calves was, stress was amplyfied. This came a month after the changes in my legs. I knew I'd been tight and weak in the calves as well, and wondered if this twitching was making them feel worse. I promptly noticed the other changes when the fasics got me looking down at my legs. Now I was suddenly staring at;

Fasciculations
Weakness
Loss of Muscle Tone
Asymmetrical Atrophy

Not a good combination. I have considered the perception and stress factor many times. I understand that BFS can cause some of these symptoms but the symptoms come and go with BFS and are not there every day and progressive. Stiffness wouldn't be there 24/7 for months? Am I wrong?

Watching and being able to physically measure changes is alarming. I'm not sure if anxiety can cause all the changes I've described. My GP said no. I know that even if there's anxiety, the moment I lay down and the load comes off the muscle the stiffness and weakness goes away unless I stretch the calves ...then the stiffness is always there.

You're right about the doctors. They recognize what I point out but don't have any answers yet.

I am just amazed at all the areas I feel this. I noticed aching in the muscle between the left thumb and forefinger in November well before I knew the letters ALS. It still aches, twitches and is smaller. However it has been needled twice and the doctors said it was clean and I have my grip. The right is feeling the same way.....clean by EMG July 1st at an ALS clinic.

BTW thanks for the tip regarding circulation and the hair falling out. I had a doppler blood flow study in February that was fine and no diabetes.

Has anyone else experienced this with the feet?

Are there others that have experienced all this without clinical weakness?

 

[Guest]

There are several neuropathies that can cause hair growth on the legs to slow or stop. My legs stopped growing hair ages ago almost completely. And the cause? To date? No one, including Mayo Clinic in Minnesota, can figure out why. They couldn't figure out lots of other things going on at the same time, either.

My point is the body is a complex system. You continue to try and lump everything together. Sometimes different things are going on and it doesn't mean they are all related.

Lots of things don't make sense to us--and even to doctors sometimes--which is why we sometimes do have to simply wait and see.

I have weakness in my legs to the point that I fall quite often--yet I have stasticity and definitely no muscle loss (I have hypertonia in my legs) but walk half a block and I'm ready literally to fall over.

I'm one of the puzzles. Doctors agree something is wrong--they just don't know what. I have clonus with my knee reflexes--and the ankles? 0. No reflexes in either ankle.

The only marked strength loss (clinical) is in my hands. The doc noted facial weakness (how, I have no idea--I don't check my face and don't even know what she was looking for to be honest) and slurred speech (that I don't seem to notice other than when I'm very tired)

I have severe weakness in the iliopsoas muscle region (according to physician notes) which I'm guessing is causing the spastic gait.(and probably a lot of my hip/leg pain) FDI/ADM (hand muscles) weakness (left worse than right) atrophy in the left hand, slight now in right as well.

My symptoms point to possible ALS--which is my current diagnosis--(which is not medically accepted for any kind of assistance at this time, which is the MAIN reason I need an official diagnosis) but it's not the only possibility--still awaiting the MRI and dreaded EMG. But, many of the signs seen on my clinical exam are UMN--which, I don't think, show up on EMG. So, I'm betting I'm going to be one of those "Let's wait and see how you are in 3 more months" cases.

My pulmonary function values are awful--below 70% of predicted range for my age and years of smoking history. My O2 sats with ANY exertion (even talking) drop to the mid 80's.

It's possible that all of this crap is something as minor as a trapped nerve in both arms (though neurosurgeon feels this is unlikely) to the spinal cord compression being worse than the neurosurgeon believes, mixed with worsening COPD/Asthma to ....whatever the heck is going on.

Everything doesn't have to be connected. I'm a diabetic. Maybe my leg issues are from peripheral neuropathy. I have asthma--maybe that's why I can't breathe. I have mild carpal tunnel according to the NCV tech from hell--maybe that's why my hands are wasting away. My back is screwed, maybe that's why my hip muscles have no strength.

Do you see where I'm going here? Sometimes there are no simple answers.

Almost everyone has different sized muscles on one side of the body compared to another. If your clinical exam is normal and EMG is normal, at least you don't have to worry about it being ALS.

 

[Guest]

Thanks again for your support. I am taking all my records including the three clean emg's to the Mayo Clinic next week.

I got another opinion from one of the two neuros the ALS association recommends in my area. He spent an hour with me. He said I have no UMN signs or clinical weakness and no problem mentioned regarding reflexes.

I guess I'm correct in believing that if my weakness and atrophy would have to be LMN if related to MND and would have been detected on the emg's. Especially with the last two done at ALS Centers?

 

[Guest]

The signs of neuron damage would be evident in the EMGs long before you have any atrophy or weakness from it. For instance, the EMG I had last summer showed signs in my arms, and I'm noticing problems with my arms now... not then.

Have you been tested for Lyme Disease or any of the other tick-born bacterium? If not, you should do so right away, and if you only had the ELISA test, then you should insist on getting the Western Blot test. Do you feel better if you're on antibiotics? Those are a couple of things that I checked out for myself before believing my neuros... and I still question my diagnosis 1-1/2 years later!

Good luck, and keep us posted.

 

[Guest]

Yes, I have been checked for Lyme. It was one of the first things checked way back in January. The neuro at the ALS Center has run every test he knows.

My symptoms of weakness and loss of muscle continue to progress.

Haven't used any antibiotics.

 

[Guest]

Get your potassium and other viatmins checked along with thyroid...believe it or not they can pass over these tests...they did for me( happens when you are pushed from one specialist to the other without them getting previous records).... and there are thousands of tests out there, insist they keep going until you get a diagnosis or your problems or they no longer persist. Does not sound like ALS though. Good luck.

 

[Guest]

There are some very basic tests (blood tests) that should be done to help sort out your problems.

B12 (not just the level, but the ability to absorb what you have in your system)
Immune testing such as serum electrophoresis, ANA, sedrate, etc. (Checks auto-immune and inflammation)
Thyroid, complete metabolic panel.

Assuming all of those are normal--consider the possibility of fibromyalgia. Ignore the fasciculations--they mean nothing diagnostically in and of themselves.

Numbness and tingling--with normal EMG/NCV is most commonly seen in a deficiency such as B-12. Left long enough--damage shows on the EMG/NCV--but not always initially.

I still stand by what I've said multiple times--it's not ALS. Nothing fits.

Hair loss in extremities is something that can have many causes--but again, not ALS.

Good luck

 

[Guest]

Cutrill,

You sound A LOT like me (I wont recap, feel free to look at ALL my Lengthy and neurotic posts), and I am almost 4 years in and finally understanding that I have something OTHER than MND. I kept 'waiting" for it to hit....and while I have never gotten better or back to how I was, I have not got to the point where my MDA/ALS doc has thought ALS or I have not lost the abilty to do things other than light excerise or have stamina for normal things etc..and yes I cramp/twitch and have thinned out legs and arms and cant carry things for long, hand/tumb/finger ache and weak daily, but There are so many other muscle disorders out there. It was a long road for me, but there comes a time when you have to move on and not get stuck. There are so many wonderful people on here that point out the facts and try to help us understand the als process....

I dont have an answer to my 'mystery illness' but they are looking into adult on set mitochondrial disease. I just post to help you understand that while you have these real issue's you should know that with clean emgs/clinicals that you may not have als. I understand how you feel when you dont get better but dont have answer. I have fond a balance and acceptance to what I can and can not do, and that my body needs to rest. I tell you, I have been there my friend...and I hope you take peace in that I have been down your road and there really are other possibilities.

blessings to you..

 

[Guest]

Thanks again for your support. I am taking all my records including the three clean emg's to the Mayo Clinic next week.

I got another opinion from one of the two neuros the ALS association recommends in my area. He spent an hour with me. He said I have no UMN signs or clinical weakness and no problem mentioned regarding reflexes.

I guess I'm correct in believing that if my weakness and atrophy would have to be LMN if related to MND and would have been detected on the emg's. Especially with the last two done at ALS Centers?

curtrill,

Please note that clinical weakness and abnormal reflexes also apply to LMN problems. The flaccid paralysis caused by LMN disease causes clinical weakness, hyporeflexia (reduced reflexes), and hypotonia (reduced muscle tone). Additionally, the chronic denervation/renervation would show up on the EMG if your atrophy was caused by a LMN disorder.

If you have been cleared of both UMN and LMN problems by a neuromuscular specialist, then you really should stop worrying about MND and start looking at other possibilities. Honestly, you've gotten some very good news from that neuro. You still may be diagnosed with some type of neurological problem, but one of the most vicious possibilities is now off the table and that is something to rejoice about.

Good luck at Mayo.

 

[Guest]

My clinical exam at Mayo was clear. However, my EMG now shows large motor units potentials / renervation in the distal muscles. There were no fibrillations, PSW's or fasics picked up. NCV study was clear. This after 3 clean EMG's. How can this be?

The neuro said it was non diagnostic. The nerves had branched to repair. He said he had no idea what the cause was. He said it was not ALS or any other MND variant. He said I should exercise, forget about the fascics and get on with my life.

I know that muscles and nerves get damaged and repair themselves throughout life. However under my situation over the last 10 months isn't this unusual? Wouldn't the other EMG's have picked this up?
Renevation in distal muscles?....

How can he be so sure this isn't MND?

Wright ......anyone...

 

[Guest]

I have big MUP's in several muscles with visible fascics & I don't have ALS. The key is that the fascics were not detected on EMG. If the fascics had shown up on EMG & they were complex, then they "might" be concerning, but only in the presence of other signs, such as overlapping UMN signs. Could be radiculopathy / polyradiculopathy caused big MUP's. That's my current assumption. My one year follow-up will hopefully put this whole thing to rest. I think the general thing to remember is that the "hard to diagnose" part about ALS is about false positives. It is relatively easy to diagnose, but they want to be "completely" sure. Thus, all the requirements for fibs/ sharp waves, etc. Clinically, I think they are very sure its ALS even in the absence of some of the stuff to officially diagnose. There are always the rare UMN variants, but they are very rare.

 

[Guest]

How can he be so sure this isn't MND?

Because he's an expert in the field of neurology. Because he's examined and tested many patients who have actually had MNDs, as well as other neuromuscular disorders, and your symptoms don't match up with what he has seen in real MND patients.

Do you have any idea how foolish you sound right now, appealing to the forum to override the opinion of a world-class neurologist? That is why you went to him for a consultation, right? Because he's one of the best in his field and could see and diagnose the things that others couldn't? Even the best can't see what isn't there.

Is being proven wrong in your Internet self-diagnosis so painful to contemplate that you don't even trust the opinion of the experts you choose to advise you? What do you expect us to tell you that you haven't heard from us already? Better yet, are you even considering taking your expert's advice and simply getting on with your life, accepting this as something that just doesn't have a physical explanation (because it obviously doesn't -- a point that you should think long and hard about before rejecting).

Just curious -- how many distal muscles did they find these large MUPS in? I notice you were unusually vague in specifying which distal muscles and which limbs, even though the EMG report likely was very specific in which muscles those MUPs were found, especially someplace as detail-oriented as the Mayo Clinic.

 

[Guest]

I do not have a copy of the EMG yet so I am not sure which muscles the MUPS were found. They checked my right side only....and back.

I was told they were in the distal right muscles. The front and back of the calve was done and the top of the foot next to the big toe.