Neuromuscular In memory of Rose Marie.


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Old 10-07-2006, 08:39 AM #1
arrigoar arrigoar is offline
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Default Help!!!

I am fearing that I may have ALS. Here are my symptoms. It has been about a month since my symptoms started. I am a 25 year old male. I am having an off balance feeling when walking and my right side of my body, especially my arm feels week. The weakest part of my arm is my pinky finger. I can still life heavy things, although I feel uncoordinated. I have been self-testing myself (i.e. fanning my fingers against resistance, walking on heels, toes, heel-toe walk)...I can do all of them. I am also fearing some atrophy in my right hand. I am also experiencing muscle twitching in my calves, stomach arms and face. I am also experiencing slight cramping in various muscles, especially in my right forearm, bicep and hand.

I am still able to run 2 miles on the treadmill, curl weights, do push-ups, etc.

I have visited my GP twice...and he has performed mini-neuro exams. He test my strength in my arms and legs and reflexes. He said everything is fine. I asked him if I had ALS and he said NO.

He ordered blood work and an MRI. My blood work came back with slightly elevated liver enzymes and calcium. I am going for my MRI tomorrow.

I am scared to death! This fear is ruining my life.

Do I need to worry...or can I trust my GP?

Please provide feeback!!!! I am so scared!!!
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Old 10-07-2006, 08:54 AM #2
mamafigure mamafigure is offline
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In the old BT there were dozens of stories like yours in the archives. You may be able to retrieve them now that BT is up and running, I don't know.

In a nutshell - your age is definitely in your favor. ALS at that age is almost unheard of. Second, you are going about getting tested, Good! I would bet my house (and I am not a betting person) that you have BFS (or something similar), an annoying, but certainly not a fatal malady.

Terrible weakness is the first sign - falling, etc. My favorite uncle died from it. I am sure that you will be fine. Keep writing.

Mama
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Old 10-07-2006, 09:25 AM #3
arrigoar arrigoar is offline
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My GP said no ALS. Can I trust him. Doesn't ALS present with profound weakness?
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Old 10-07-2006, 12:58 PM #4
mamafigure mamafigure is offline
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Yes, it generally does, and since you have no profound weakness, that should help alleviate some anxiety, but it probably doesn't. We;ve done an informal study on this site, and it seems that those who are dx with bfs have an abnormally high anxiety level when relates to ALS. We have concluded that this is a sx of BFS.

You are running! Man, that is fantastic!

The main thing is to keep writing here and BT1, since it is now back on line. There are so many folks that have gone through what you are going through and they are there to help you.

mama
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Old 10-07-2006, 06:42 PM #5
Sandy Lynn Sandy Lynn is offline
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You sound like me ... was it four years ago?? How time flies! I also had the clumsy feeling, twitching, cramping, percieved weakness ( maybe from so much self testing and muscle measuring) I would believe your doctor. Easier said than done though, been there... tried that....
Have you tried methylcobalamin B12? It was the cure for me. Although I still do have the odd twitch and other symptom, things are 90% gone thanks to my vitamin routine.
Take care.....Sandy
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Old 10-13-2006, 12:52 AM #6
Slimjim Slimjim is offline
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Quote:
Originally Posted by arrigoar View Post
My GP said no ALS. Can I trust him. Doesn't ALS present with profound weakness?

Yes, if your doctor says "no ALS," you can trust him. They typically don't give guarantees so when they do, you can be pretty sure! I was never told that by my doctor, he used words like "unlikely" and "probably don't." As others have mentioned, ALS at 25 is extremely rare, very few cases occur before 30. There are some people who have contracted the disease in their early 30's but even that is rare considering the average age of onset is 55 or 56! I'd be willing to bet that you have BFS or something much more benign, I'd also be willing to bet that your symptoms will wax and wane with stress and other factors. Try to exercise, eat a well balanced diet, take some extra vitamins and limit stress.
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Old 10-13-2006, 12:22 PM #7
arrigoar arrigoar is offline
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I believe that I have some atrophy in my right thumb pad, near my wrist. I have full function of my thumb. I am experiencing body-wide muscle twitches, that started after I noticed weakness in both my right leg and arm. I have been to my GP twice and he cannot detect any clinical weakness. I had an MRI of c-spine and brain, both were clean.

2 Questions...

1. It is my understanding that the sequence of a pathological neuromuscular disease, such as ALS is profound weakness, atrophy, then twitching. So in my case, if it truly was atrophy I probably would not be able to move my thumb, or at least have limited movement.

2. If you have had a clinical exam by a GP, who says reflexes are normal and muscle strength is good, doesn't this point away from ALS. When I spoke to my GP yesterday about my MRI results, he said that I could go to a neurologist if I want. He did not say it is necessary...so I am guessing that he is doing it for piece of mind. Is that a good sign pointing away from the dreaded disease as well?

Can't most GP's pick up some signs of clinical weakness??

Thanks,

Tony
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Old 10-13-2006, 03:04 PM #8
mamafigure mamafigure is offline
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You've answered your own questions. Now go outside and play some ball or take a brisk fall walk.

You are going to be fine, but the haunting feelings will be with you for awhile, and once and a while they will come back, but it each visit will be farther and farther away.

Take care and keep posting,
mama
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Old 10-13-2006, 11:55 PM #9
Slimjim Slimjim is offline
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[QUOTE=arrigoar;25009]I believe that I have some atrophy in my right thumb pad, near my wrist. I have full function of my thumb. I am experiencing body-wide muscle twitches, that started after I noticed weakness in both my right leg and arm. I have been to my GP twice and he cannot detect any clinical weakness. I had an MRI of c-spine and brain, both were clean.

2 Questions...

1. It is my understanding that the sequence of a pathological neuromuscular disease, such as ALS is profound weakness, atrophy, then twitching. So in my case, if it truly was atrophy I probably would not be able to move my thumb, or at least have limited movement.


Typically yes, but of course, there are always exceptions. What is most profound in your case is your age. On the old forum, there were thousands of posts and probably thousands of people who passed through the ALS forum. I spent a lot of time researching their symptoms and many of them had different onsets. However, I don't recall coming across anyone who was as young as you, that's what you need to consider. Yes, if it were true atrophy you would have a difficult time doing much of anything with your thumb as there would be significant muscle loss by that time.

2. If you have had a clinical exam by a GP, who says reflexes are normal and muscle strength is good, doesn't this point away from ALS. When I spoke to my GP yesterday about my MRI results, he said that I could go to a neurologist if I want. He did not say it is necessary...so I am guessing that he is doing it for piece of mind. Is that a good sign pointing away from the dreaded disease as well?

Can't most GP's pick up some signs of clinical weakness??



I would be satisfied but everyone is different. Any doctor should be able to test reflexes and ascertain muscle strength. A neurological exam by a actual Neurologist is more thorough but given your age (not to beat a dead horse) I would consider this move unnecessary. You may want to see a neurologist, as you mentioned, for piece of mind, it would certainly help resolve some of your anxiety issues after he examines you. Think about it. In the meantime, don't waste precious time worrying about something that is so unlikely. Nearly four years ago, I developed almost exactly the same symptoms as you, almost overnight. My doctor was a bit concerned as he skipped the Neuro and ordered an immediate EMG, it was clean. Subsuquent exams have also been clean over the past 4 years (by neuros) and I am 35! I was convinced I was doomed to dissolve in a bed and wasted so much time worrying about it, to the point of developing ulcers and more health problems, it can be a vicious circle. Try to stay busy and try to enjoy life, hobbies and your family and if you feel the need for extra assurance, go see the neuro.
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Old 12-08-2006, 08:32 PM #10
mhowellgtc mhowellgtc is offline
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Default Facial 'tingling' and bottom of left foot

for 9 mos I have had minor irritating tingling in bottom of my left foot. a little more now in my left leg, not really localized anwhere. Also my face and head has the occasional very irritating tingling feeling or like itching uinder the surface of my skin and inmy ears. I have had exam with neuro and now waiting for a spinal MRI. The tingling in my face and head is very strange - anyone experience a similar feeling?
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