Old 04-14-2013, 07:12 PM #1 (permalink)
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Default Completely confused

I have no idea if ALS is a possibility or not but this seems to be a very good resource place so I figured I would ask. (sorry for the following novel!) I have put in searches for statements on different tests I have had or Dr impressions from my clinical visits and many lead me to ALS information. I don't think I have enough symptoms for ALS but do not know enough about this disease and that is what brought me here and there is a nagging little voice that keeps saying maybe but hopefully not.

I have extreme weakness in my upper legs. To be able to raise from a sitting position I have to walk my hands up my legs for the extra strength. Once in a standing position I have to stand there for a minute or so until I can get my legs coordinated enough to move. It is almost as though my brain is having problems telling my leg to move. I usually have to sway a bit to get the momentum to start moving. If I walk for more than 20 or so minutes I develop a shuffling gate because I am unable to lift my feet up at all. If I lay flat I am unable to straight leg lift my legs up more than a couple of inches. When sitting I am unable to raise my thigh up off the surface more than a couple of inches and cannot hold it up when someone applies any pressure down on it. I am also unable to stand still without swaying. I am also unable to walk on my heels or toes or walk heel to toe. My balance has been effected. If I held on to a wall I could raise my leg up with a bent knee but if I let go of the wall I am unable to balance or hold my leg up.

I did not realize I had any major weakness in my upper body until the last Dr I saw did some tests. I just thought my weakness was part of aging and wasn't as noticeable as my legs. She noticed I have weak facial cheek muscles and upper arm weaknes, slopping shoulders and a cervical hunch and weak neck flexion.

I have severe cramping in my shins that extend down my leg to my feet that cause my feet to pull upwards and my toes pull upwards and apart. I am unable to walk these out like I can with calf cramps and they can last 20-40 min if not longer at times. I do seem to get them more with increased activity.

I do not notice or feel any twitches.

The only real pain I experience is from muscle fatigue and unnatural gait and is mostly in my hips. I can't sleep on my sides because of the lack of muscle support for my hips which causes pain that seems to be deep.

My EMG shows that activation was reduced and full interference pattern was not achieved. There is slow recruitment rate seen in upper motor neuron disease or functional disorder is present.

My muscle Bx was done in the left deltoid and left vastus lateralis shows moderate variations in fiber size with several small angulated strophic fibers and group atrophy. Several nuclear myobags present. The ATPases show angulated atrophic fibers of both type, fiber type groupings and group atrophy. The alkaline phosphatates highlights an occasional regenerating fiber.

I have been trying to get hold of the Dr that did the bx and after a month they connected me to the "fellow" that was with my Dr during the Bx. He said without more information he couldn't give me much information but it was more neurogenic than muscular dystrophy which is what the initial thought was and the reason for the bx. I don't have a folllow up appt with the Dr until June. She said she would contact me sooner with results but so far nothing.


I honestly have been terrified I have mentally created all of these symptoms but everyone has assured me the symptoms are real. I just want a Dx, this not knowing is driving me crazy and has led to sever depression. I am hoping once I have a Dx I can accept it and make a plan and continue to move forward.

I would like to thank you all in advance for any information you share with me. I would give anything to have you say I am in searching in the wrong place.
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Old 04-15-2013, 05:17 PM #2 (permalink)
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Default Re: Completely confused

Why are you searching so hard for a diagnosis? Whatever you have you should focus on deficits you have and find a way to learn how to either compensate or adapt to something different. Don't know your age, diet or level of activity but it sounds like if you make a list of all the things you can't do, that would help you better manage life. Time is one of the things everyone in this life is limited with. You are seeing doctors and need to continue but even without a label on it you need to address a few things for making life more enjoyable at least. Make a plan and continue forward. Sitting around and doing nothing but focusing on limitations only wastes a limited resource...time. Good luck.
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Old 04-15-2013, 05:44 PM #3 (permalink)
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Default Re: Completely confused

I agree with Eddie. It took me 5 years to find my answers, but I did not stop doing what I love. In fact it made me work harder to do the things I like. Yes I have slowed down but I refuse to let it stop me. You learn to work around it, over it or under it. What ever it takes until you just can't.

I know how frustrated yo must be. I felt like I was crazy for the first 6 months then I finally went to the dr and it took 2 gps and 3 neuros before I knew I wasn't crazy. I had abnormal emgs but normal blood work, mris and cat scans. I had a muscle bx and got my diagnosed. Just be patient and continue to live your life. Do things you enjoy to the best of your ability. Your answers will come.
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Old 04-15-2013, 05:46 PM #4 (permalink)
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Default Re: Completely confused

When my symptoms started in March 2011 a Dr ordered an MRI of my thoracic area and they found an extramedulary cyst from T-4 to T-6. A neuro surgeon said it can't be causing my problems and sent me to Clevenland Clinic. After 3 more Drs, a battery of lab work and more MRI's the cyst increase from t-4 to t-7 and they took the cyst out in Dec 2011. I started therapy and very slowly was building up my strength but every time they increased the workout I would have a major set back that would take about 2 weeks or so to get back to where I was. They contributed it to swelling around the surgery site, the new Dr said it was my disease process flaring up. In June I missed 2 weeks of therapy and my ability to move had deteriorated so much they advised me to go back to the Drs. My follow up MRI showed the cyst had not returned. My current Dr said the same as the initial Dr that the cyst couldn't be causing the problems. I am slowly trying to get back to exercising and able to do about 15 or 20 min every couple of days, any more than that sets me off for days of not being able to walk.

I really want a Dx or idea so that I can get back to therapy and do appropriate therapy that will increase my stamina and not hurt it like I have in the past.

I know to many the issue of disability is not a good reason to try to get a Dx but I am a nurse and not able to stand or walk for any amount of time so unable to work. Not being able to work and with no other income from me, things are very tight and getting harder. I am waiting on a ruling but think a Dx would help.

The other fear I have is that in the back of my head is that I have mentally created these symptoms since no one can figure it out. I hear all the time "you are a very interesting case" None of my symptoms seem to follow anything specific.

As far as a little about me, I am 53. I watch my Grandson daily, he has not been Dx by a specialist but speech therapy and special ed people think he has apraxia, he is 2/12. We go to playgroups 2x week for him and that physical activity can do a number on me for the rest of the day. I am also a photographer. I make it through an hour session or so but some days can't walk for 3 or so days afterwards. I have gone from 30 or so clients a year to about 7 or 8 because I can never tell if I will be able to do their session that day or not and they all understand I might have to cancel.
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Old 04-15-2013, 06:04 PM #5 (permalink)
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Default Re: Completely confused

I understand your urgency. Keep pursuing a diagnosis from your doctors. Hugs and Good luck to you!
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Old 04-15-2013, 06:25 PM #6 (permalink)
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Default Re: Completely confused

Have they looked at myesthenial gravis? Alot of your symptoms sound like mine and I have mitochondrial myopathy. I hope you get answers soon.
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Old 04-15-2013, 06:28 PM #7 (permalink)
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Default Re: Completely confused

I don't know your financial resources but could you afford a trainer at a health club? The key in rebuilding the body especially at OUR age is no pain no matter what as a goal. If you start very gradual, build the core and then start on aerobic building you will benefit by more oxygen rich blood, less fatigue and more muscle endurance. Also, AlignMed makes a very interesting product called a Posture Shirt that will help a lot while standing by keeping you in a more natural posture.

Do you have access to aquatics therapy. Another great no impact rebuilding process.

Do you see a family doctor and are they an osteopath or MD? Many of the things you mention can be much worse when the adrenal glands have kicked in from worry. Reducing stress, good diet and a well rounded exercise regime would help immensely. While all the other things are running their course, I would be glad to help in any way on any of the above via phone or email just to keep us both busy and to help you get a bit more comfortable.
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Old 04-15-2013, 06:49 PM #8 (permalink)
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Default Re: Completely confused

H karvin, let me add my two cents worth here (about all it's worth). It took us about three years to finally get a diagnosis, from the time of her first suspicions. Like so many have said on this forum, getting a diagnosed for als is basically a process of ruling out everything else. This is always a slow, frustrating experience, full of anxiety and fears, ups and downs, hopes and let downs.

But it is true that you can cause yourself some additional problems just from fretting over it so much. The best thing to do, in my opinion, is listen to your Dr.'s, see the specialists, and don't try to force the issue, because it requires a certain amount of time to be sure about this. If, after all the other tests don't find something else....then yes, it could be this. But in the meantime, try not to worry yourself sicker because you do not know 'exactly' what is wrong. We all understand your anxiety and dilemma.....we all went through it too.

It is hard to be patient, but that is what you have to do. AND, if it does turn out to be als (we all hope it's not!), understand that life does not cease the day you find that out. You will think so, but it will be o.k., once you have had some time to deal with the reality.

SO, we are all hoping for the best for you. Keep sharing, others will have better advice for you. I'm just telling you what little I have learned so far. You are at the right place for support, and you are not alone!
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Old 04-15-2013, 07:02 PM #9 (permalink)
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Default Re: Completely confused

Thank all for taking the time to respond. The Dr that did the bx and saw me clinically just called. She said even though the labs and emg all show neg for Myasthenia Gravis she still thinks it might be and my symptoms do follow that. She said there is a medication you can take (not a steriod) that can help during a symptomatic period. I am going to be trying that. She said it can't hurt me if I don't have MG.

I did forget to ask her for physical therapy but will when I call her back about the results of this medication. She also wants me to go in for a single fiber emg which I haven't had.

Still no mention of anything extremely wrong with the bx so will thank you all and cross ALS off my concerns.

Good luck to all of you.
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Old 04-15-2013, 07:09 PM #10 (permalink)
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Default Re: Completely confused

I am on mestonin 60 mg 3 times a day. It was originally designated for mg because it does help your body produce energy. It has helped with my mito.
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