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curtrill

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New member requesting help and direction. Here's a rundown of my current symptoms and the last 5-6 months. I'll do my best to summarize.

My current symptoms are:

Subjective weekness in all four limbs, chest, shoulders, back, face, jaws. The weakness in my legs has spread up my legs from my calves to quads, hamstrings and glutes.
Heavy arms & legs. Legs feel like concrete while standing.
Exercise Intolerant.
Overall Fatigue.
Overall Decrease in muscle tone (Flacid, especailly calves)
Fasics bodywide (most in lower legs) I get them from my feet to my throat and a few in my torso.
Atrophy? Right foot and calf.
Pain in both hands between thumb and forefinger.
Tongue - teeth impressions, a wide groove in center and perhaps a bit of erosion on surface. It even started bleeding for no reason on the tip a little bit last night after eating ice cream.
Tongue is a bit white on surface (not sure if that's normal).
Slightly Sore/weak throat (only slight, if any swallowing problems).
Tight sensations in my feet when I start walking.
Right toe wants to lose feeling at night .
Buzzing feeling pulsating in lower right leg.
No clinical weakness or loss of coordination, no tripping.
High level of stress for a couple of years.

46 year old male/athletic able to hike miles each day until the last 5-6 months.
Noticed "tightness" behind knees and tingling in hands and feet along with a strange, sort-of numb feeling in right great toe. (Nov. 2010) Tightness with pain in the ball and arch of my right foot had also been occuring 3-4 months prior to this. I assumed arthritis. It did not slow me down.

Began to experience faciculations and fatigue in both calf muscles. Generalized fatigue (feeling of weakness) was also noticed in legs, arms, shoulders, chest. Fasciculations quickly became widespride but concentrated in the calves. Decrease in overall muscle tone and loss of the ability to build muscle. (Dec. 2010)

Referred to a neurologist by GP. No clinical weakness was found. Administer EMG/NCS to "ease my mind" regarding ALS. Single needle insertion was done on right arm/leg and also in between the thumb and forefinger on the left hand where I'd been experiencing an aching feeling. Both tests were clean and I was told by neoro "No ALS. Your chances of developing it were the same as the general population". (Jan. 5th, 2011)

All symptoms continued. Weakness in the calves increased. I'd gone from being able to hike all day to feeling fatigued/weak in the lower legs with just a stroll through the store. This occurred seemingly overnight with the onset of fasciculations.
After follow up visits with the neuro over the next several weeks I went through about 6-8 rounds of blood work, MRI brain and upper cervical, MRI of thorasic and lumber spine (Some slight narrowing, arthritis, slight buldging disk and narrowing were noted-problems I've had for years-nothing to explain symptoms) Additional test was done on my legs to check circulation. All tests for "mimics" came back clear. Spinal doctor confirmed "loss of soft tissue" and my right foot/ankle. Also he notice my right, dominate calf muscle was smaller than my left. The neuro dismissed the observation, insisted that based on her clinical exam and emg that I do not have ALS. She diagnosed me with BFS. She then referred to ALS clinic for second opinion for my peace of mind. (Feb. 2011)

Since it was going to be months before one of the neuro's could see me, the Nurse Practicioner who works with many of the diagnose patients saw me. (March 2011) There were no sensory problems and no clinical weakness was found.
She did observe, "decrease in muscle tone" in my right bicep and pectoral muscle. She recognized a difference in muscle shape in my right calve compared to the left. Fasciculations did not occur during the exam (I bet that's never happened to anyone before) She did point out tongue fasics. After the exam she said, "I cannot tell you yes or no ALS".

She sent me for an EMG/NCS. The EMG was done by an intern doing his neuro turn supervised by an Ass't. Professor of Neurology (March 2011). A single needle insertion was done on my left bicep, hand (between thumb and forefinger) quad and calve. Also my right quad and calve. When the test were complete, the ass't. professor said that both test were clean and did not show any evidence of nerve or muscle damage that would indicate a motor neuron disease.

I followed up a week later with the N/P. She told me that I do not have ALS. She went entirely back through the neuro exam and now did not seem concerned with her previous findings. I showed her the smaller foot and calve muscle. She said she was not concerned with them at this time. Once again, there no were fasics seen during the exam. When I asked her about having them she said it is BFS. In regard to my subjective weakness, she told me to go back to my GP "maybe it's CFS". She told me to come back in 6 months. I saw my GP the following week. He laughed and said if the neuros can't diagnose you I sure can't.

The neuros and my family want me to forget about ALS based on the clean emg's.
Can I?
Fasics driving me nuts! Feeling cotinually worse. Progressivly weak. I would love to forget about ALS and move on. If I could just get my body to listen!
Could it be something else?

Thanks so much for reading through all of this! Any feedback would be appreciated.

curtrill
 
You have seen multiple doctors who have all told you do not have ALS. Be happy friend. Move on with your life and embrace being healthy. Particularly when you have -normal- EMG's.

It's obvious you're dealing with an extreme amount of fear and anxiety. Which will only make symptoms (real or perceived) that much worse. This has been well documented in cases of BFS.

I myself may have BFS too, though I'm uncertain because of an -abnormal- EMG. Still I do whatever I can not to let the fear take over.

Lastly no one here is a doctor, and can assist you any further than medical professionals already have. If you still feel the need for further assurance, wait for your appointment at the ALS clinic. Otherwise you're going to drive yourself insane - and quite frankly are wasting your money.

To be blunt, there's a young man here in this very forum who was just diagnosed. I'm sure he would love to trade places with you, and your good news, in a heartbeat.
 
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This definitely sounds Autoimmune...not related to MND at all.
You could be B12 deficient. Matches all of your symptoms perfectly. If that is indeed the case, your situation can be remedied easily.
Don't sweat it until your doctor gives you a diagnosis to worry about. And even then, anxiety just adds to the devastation.
Best of luck. :)
Alastor
 
The neuros and my family want me to forget about ALS based on the clean emg's.
Can I?

Can you? Yes. Will you? Probably not, which explains why you're here. How many cases have you found in our archives that kinda sorta almost are exactly like yours if you changed X/Y/Z?


Fasics driving me nuts! Feeling cotinually worse. Progressivly weak. I would love to forget about ALS and move on. If I could just get my body to listen!
Could it be something else?

It's not your body that needs to listen. The dysfunction is higher up.
 
My question is what kind of information are you looking for? Is there anything that would put your mind at ease or are you not looking for that? Not trying to be a wise guy here. You have been told by Doctors.. So curious what you'd like folks here to say?
 
Thanks for replying. About BFS, everything I have read outside of CrampBFS, symptoms come and go. Weakness, stiffness fatigue etc. and there is no decrease in soft tissue. Since this started with me 5-6 months ago it has been there each day. It has progressed with no good days. Does your BFS present with consistant, everyday symptoms other than fasics?
Thanks,
curtrill
 
This definitely sounds Autoimmune...not related to MND at all.

You could be B12 deficient. Matches all of your symptoms perfectly. If that is indeed the case, your situation can be remedied easily.

Don't sweat it until your doctor gives you a diagnosis to worry about. And even then, anxiety just adds to the devastation.

Best of luck. :)
Alastor

Thanks for replying. B-12 was checked and found to be normal. Any other guidance you could suggest to determine what "autoimune" may be causing all of this would be appreciated.
curtrill
 
My question is what kind of information are you looking for? Is there anything that would put your mind at ease or are you not looking for that? Not trying to be a wise guy here. You have been told by Doctors.. So curious what you'd like folks here to say?
Thanks for your reply. Yes, I am looking to put my mind at ease. What would ultimately do that would be to start feeling better. So anything that folks could tell me based upon their knowledge and experience would be helpful.
How much confidence can I have in the EMG's? I have read that EMG's are a very good diagnostic tools "in the hands of a skilled EMG'r". Both the neuro I saw and the N/P made the statement "I don't see ALS patients in early stages". How much does the experience level of the EMG'er play a part? Also, they only did 5-6 needle insertions. Is that enough to "know"? How thorough should the EMG be? My first one was done 1-2 months after initial symptoms. The second was 4-5 months after initial symptoms. How was your EMG done? How long had you noticed symptoms? How common is it for people to be told "no" and later to be told "yes"? How common is it to present initially without clinical weakness?
If I only had twitching and symptoms that would come and go I would not be asking for the valuable time of the people on this forum. But with fasics, assymetric loss of soft tissue, weakness and fatigue all day/every day, yes I am still concerned. Thanks again for sorting through this. I appreciate your patience and honest feedback.

curtrill
 
How much confidence can I have in the EMG's? I have read that EMG's are a very good diagnostic tools "in the hands of a skilled EMG'r". Both the neuro I saw and the N/P made the statement "I don't see ALS patients in early stages". How much does the experience level of the EMG'er play a part? Also, they only did 5-6 needle insertions. Is that enough to "know"? How thorough should the EMG be? My first one was done 1-2 months after initial symptoms. The second was 4-5 months after initial symptoms. How was your EMG done? How long had you noticed symptoms? How common is it for people to be told "no" and later to be told "yes"? How common is it to present initially without clinical weakness?

All of these questions have been asked and answered here literally dozens of times, so I'll give you the short answer -- you (and we) are not qualified to critique the technique of the neuros who did your EMGs. The rational thing to believe is that they are competent at doing them; otherwise, they would have been sued out of business by now. Don't bother to object about the intern at the second EMG -- he/she was under the supervision of the professor who is legally responsible for the findings issued in the report.

Second, the types of neuromuscular problems that the EMG "sees" in the body of an ALS patient are detectable months, if not years before any symptoms in those areas are noticeable to the patient.

It is extremely rare for someone to be told that they don't have ALS and then be told later that they do have it. The opposite situation happens far more frequently.

It is extremely rare, if not unheard of, for someone with lower motor neuron problems to present without clinical weakness. It is equally rare for someone with upper motor neuron problems to present without hyperreflexia and/or spasticity. You have to have both upper and lower motor neuron involvement in multiple regions of the body to have ALS -- it is the criteria for diagnosing the disease.

No clinical weakness and clean EMGs -- no lower motor neuron problems. No brisk reflexes and no spasticity -- no upper motor neuron problems. No LMN or UMN problems -- no ALS or other motor neuron disease. Which is what two neuro opinions have already told you, including an ALS clinic.

Why is that so difficult for you to accept? Your fasciculations are accounted for (the BFS diagnosis) and your other symptoms are not neurologically caused. There are dozens of other conditions that cause your other symptoms. Why do you insist on worrying about a disease that the experts say you don't have?
 
trfogey,

Thanks so much for taking the time to leave this detailed reply. I guess the difficulty is in having all these changes quickly taking place in my body with no explainations. It is puzzling to have such leg/arm/upper body stiffness/fatigue/weakness that only seems to be progressing. Every step, all day every day, fells like concrete in your legs and you wonder how long you'll be able to continue at this rate. Any stretch of the muscle feels like your muscles have been replaced with a few old rubber bands. Seeing your muscles becoming flaccid/floppy. Having your dominant leg and foot smaller. Seeing your right foot having lost most all of the soft tissue, being down to practically skin and veins on bone, all the hair has fallen off the right foot!.....you know something ain't right! Praise God I have been told no ALS! Thanks again for your past support and any additional comments/ideas you might have.

curtrill
 
Try a rheumy to see if there is an auto-immune issue going on. The normal EMG/NCV=--really---take ALS off the table. The hair loss on that leg/foot do signal something going on, I'd think. The first one that comes to mind is something vascular.

Try getting copies of all your reports--MRI's, EMGs, blood work-- then take them all to one of the ALS clinics listed on the ALSA site and go see them so you can put ALS to rest.

There are a ton of things that can cause muscle pain/weakness--Fibromyalgia is one. Did they do a muscle biopsy in the foot with the atrophy? Is that the area the EMG/NCV was done on? Believe me, with obvious atrophy, IF it was als--the EMG would have shown it. If there's nothing showing on those tests--they'll likely look at circulatory problems. Ask your GP about PAD (peripheral artery disease)
 
They have done a doppler blood flow study. It was fine. I had no trigger points indicating Fibromyalgia. They have done no muscle biopsies. But seem to feel they have tested for all other muscle disorders they know to test for. Myopathies, MG, etc. The NCV was done from my right shoulder through right ankle as I recall (side w/atrophy). EMG was done no lower than the calve muscle.

curtrill
 
Just to clarify and not mislead or exagerate, when I say that my right foot has lost soft tissue is down to skin and veins on bone, I am referring to the top of the foot not the bottom or entire foot. I am still walking normally but with some discomfort in the foot. Curtrill
 
Did your blood work check your testosterone levels? Low T levels could cause some of what you have.
 
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