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timesup

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mt
hey all
i am new to this forum ive been on aboutbfs for awhile- my father passed away from ALS in 2003 i have been on the rollercoaster since as i was a care provider. i have had left side stiffness left side pain arms- leg-calf-ribs-shoulder left side of neck-and perceived weakness in leg and arm and shoulder very stiff and achey and fasiculations mainly on the left side- however both calves go but the left always more than the right- was checked in 03 ok- went back in o6 had all the tests except spinal tap all tests ok- now i am scheduled to go in on the 29th to my same neuro-reason for the visit - my friend a physical therapist noticed atrophy in my left foot- and of course ive had the fasics in my left foot mainly the arch for quite some time- but now atrophy!? my fasics have changed also in my foot they are more pronounced and mainly in the area of atrophy- is that my anxiety doing that or could it be? my left foot is smaller than the right and yes there is smaller muscle size but i cant remember if my left foot was smaller than my right i have noticed it does fit in my shoe differently than b4 alot more room and less arch in my foot so the foot seems flatter- i am also experiencing some balance issues as it seems there is less muscle to keep balance? my left side has always had some kind of twisted off to the left foot anyway- anyway i am scared to death- im a 47 year old male and just waiting for the neuro appt. Can anyone tell me if (in their opinion) I should be worried- does it sound like the wrong kind of symptoms for a clear diagnosis-
 

Al

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I don't think your timesup yet. Stiff achey and pain don't usually mean ALS. You mention atrophy but not real weakness. Good that you're seeing a Neuro but I wouldn't be selling off all your stuff yet.
AL.
 

awieleba

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HI,
I dont think your time is up yet, either. I am so sorry to hear about your father! This must have been so difficult for you. I can understand your fears. I also have lost alot of muscle in my feet and hands. I get the ache and pain in legs. But, the only thing that will but your worry to rest is seeing the doctor and getting the tests. See your Neuro and get the tests and myabe that can shed some light for you. then you will know if it is time to worry.

Take care!
april
 

timesup

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thankyou for the opinions

Hey thank you guys for your opinion
I am currently at home (took the day off) as this has really got the best of me I am ocding really bad-I am one of those type of people that needs to know the answer right away- lets not mess around or beat around the bush ( i need answers) hence my ocd-My girlfriend is really in a funk(shes been crying all morning till she had to go to work) due to my emotional state -and i wish i could get myself out of it. It all comes down to the foot atrophy - you know left side issues for over 2 years with fasiculations and pain and sensory changes like burning and pins and needles as well as fatigue and loss of strength on my left side but not what is considerd "clinical weakness" So here i am just waiting to get in and praying it is a clean EMG with a clear checkup - im thinking i should get the spinal tap i heard it is 95% accurate - is that true? thank you again
Dave
 

Suzan Williams

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Still unsure

Hi 3rd time around - I too am very concerned and want an answer quickly so I can get on with things, not be so depressed and then I can just deal with what I have.

I am from Australia and have only had the fasciculations anywhere and everywhere for about 4 months, aching muscles (like I have had a major workout on those muscles), cramps in muscles and overall tiredness. I had an EMG and nerve conduction which were negative, but the neuro is sending me on to someone who has a particular interest in this area, but not for four months. I am over this and want answers now.
 

crystalkk

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Hi Dave and Suzan,

I think alot of us in the limboland just want answers, but with this nuero stuff you just don't get answers.
I was very anxious in the beginning of my symptoms also, it wasn't until I joined this forum that I learned that it could take alot of time to get any kind of diagnosed. So just hang in there, stress and anxiety will only make the symptoms 10x worse. ( I know it is easier said then done)

Dave- A spinal tap can not tell you if you have ALS. They use it for diagnoseding MS or Guillan barre and things like that.
 

timesup

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Hi Crystal
here is the paragraph that i read for the ALS test- sounds to be something new-

A study by researchers from Mount Sinai School of Medicine identified three proteins that are found in significantly lower concentration in the cerebral spinal fluid of patients with ALS than in healthy individuals. This finding was published in the February 2006 issue of Neurology. Evaluating the levels of these three proteins proved 95% accurate for diagnosing ALS. The three protein markers are TTR, cystatin C, and the carboxyl-terminal fragment of neuroendocrine protein 7B2). These are the first biomarkers for this disease and may be first tools for confirming diagnosis of ALS.
David
 

awieleba

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That is interesting. I will ask my neuro about it as I am going to have a spinal tap in the future.

I understand your impatience. I am so OCD! I just want answers too, I fond that we will not get them when it comes to this. I am the same, I even drive fast when I have no where to go! Whats the hurry? I dont know!

I can relate. what and where do you mean by atrophy on your foot? My feet have shrunk and the muscle b/w my thumb and Index finger has thinned out (my neuro saw and wont say if she is overly concerned) I have had twitching and myclonus with brisk reflexes for over 4 months, trust me, I get it.

I read on this forum a few times that no diagnosed is better than a diagnosed. So, with that being said, live in the moment that you (i) have no diagnosed yet and are still able to do so much!

Let us know how your appt on the 29th goes, I really want to know.

bless you,

apri;
 

timesup

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to april

Hi April
it has lost muscle on the inside of the left foot right behind the front toe and continues to twitch - so its a new type of twitch for me also as most others were not so centralized on one spot
 

awieleba

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can you stand on your tip toes with that foot? I dont have a notable atrophy in one spot of my foot but I feel like my big toe is strained all the time. And my toes on that foot feel different when I walk.

do you mean under the toe on your ball of foot pad? or the toe its self?
 

crystalkk

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David,

It's an interesting article, did you talk to your nuero about this? It was a study i wonder if they started using it yet? I had my Lumbar puncture a year ago and when I asked if they look for ALS I was told no that they wouldn't be able to through the spinal fluid. Let me know what your nuero says?
 

timesup

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to april and crystal

Hi Again
April more like in the front of the arch twords the big toe- and crystal i will mention it to the neuro if i ever get to talk to him man i have tried 4 times today to just talk to a body and all i ever get is a recording
David
 

olly

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timesup

i was intrested in your post,especially about your foot arch.
i have had mostly umn desease/pls for 9yrs,but over 18mths ago during a routine neuro exam found i had hypotonia/loss of contraction in my left lower leg.
this leg has got slowly weaker(clinical weakness noted by neuro).
i had a lot of twitching there at one time but now have cramp in lower leg and foot that can last for days on end.
i noticed slight atrophy in my outer ankle,under the bone there is a big crater and a deep hole on the top of my ankle. also general muscle loss in foot,the bones and tendens ect stick out.
i have difficulty walking with my foot /leg,my leg swings back more and both leg/foot gets tired easily and i sometimes have to drag them.
my left foot was always wider than my right but now my shoes slob off my left foot.
i mentioned this to my pt who can see a difference in my foot.
she noted that my arch has collapsed in my left foot and is arranging for me to see someone about it but i need to see my neuro.
i also have now very slight atrophy in my left calf,about just over 1/2inch.
i am not at the panick stage yet about it due to my slow progression with umn desease and hoping there is a simple explanation like it could be due to the loss of contraction in that lower leg. though hypotonia can be a lmn problem,more so in mnd.
i just thought i would share my foot story as it is so similar to yours.
i hope you get answers from your next tests,you are in my thoughts.
take good care
caroline:)
 

awieleba

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olly,

I have the same thing on my left ankle. It is a hole-like spot just above that big bone where foot meets ankle. my foot tendons and bones stick out as well. it feels like a cramp-feeling but no real painful cramp. does your cramp move the toes, would a I know if I had a cramp? or is that cramp "feeling" a cramp? it does ache or hurt a little. I feel it in the arch of my foot.

thanks

april
 

olly

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hi april

i do have a hole in the place you are talking about,but my main atrophy is underneath the outer ankle bone like a big lump of muscle has been scouped out,there are small muscles visable on my right outer ankle that are no longer there on the left.
i get cramping aching pain in my calf,ankle and foot that lasts for days.
i have tried ankle supports and arch supports but nothing works.
i go see my neuro in a couple of months but my pt is going to arrange for me to get proper supports fitted by someone in orthostics,i think thats what they are called.
i hope you and your children are enjoying the summer holidays,the kids were i live have only been off on school hols for 1week and there driving me mad...........still 4weeks to go,i'll go loopy by then:lol:
take good care.
caroline
 
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