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Hitemhard14

New member
Joined
Sep 7, 2013
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6
Reason
Learn about ALS
Country
US
State
NC
City
Waxhaw
Hi All,

First, thanks in advance for taking the time to read / respond. I will try to be as short as possible but I do want to paint an accurate picture so please have patience with me.

I am a 39 year old male who has been active my entire life except for the past year and a half with increasing family / work commitments.

My only diagnosed conditions are

1. "moderate cervical stenosis @ C-3 & C-4.
2. Gerd

Symptoms
1. Weakness and pain in hips for nearly a year. I can still run (not a lot though) and walk though feel unsteady at times, especially in the moring.
2. Stiffness / soreness and mild cramping in hamstrings since March. There are a few occasions where I actually feel like the old me but even a little excercise makes the condition worse.
3. Fasciculations in calves since June. They are constant; sometimes worse than others. Same stiffness / soreness and mild cramping as noted with hamstrings.
4. Toe cramping that comes and goes. Occassional pain (feels like subtle cramp) in plantar area of foot.
5. Feeling of heaviness when breathing that varies in severity from day to day. Today, as i am typing this, I am not having it at all. Winded very easily.
6. Constant acid reflux. Been through several meds. On Nexium and probiotic now hoping for better reults.
7. Muscle cramping in thoracic area of back. Some days, pain is a 5/6 on a 10 scale.

Tests
1. MRI of head, cervical spine, thoracic spine and lumbar spine. Results noted above.
2. Lots of blood work - everything normal. This includes: Lyme, West Nile, Lupus, Rhum factor, Sed Rate, Muscle Enzymes (CPK) and probably some others I am forgetting. Neuro requested the last round of blood tests and they were normal.

Treatments
1. PT for neck and thoracic area. Therapist commented on hip weakness although saw mild strength improvement over 2 weeks.

Upcoming Tests
1. EMG and NCV? end of October
2. Sleep study and visit with Pulmonologist in 2 weeks

Other factors
1. Dealt with 2 deaths this year (mom and her husband).
2. Mother had 2 strokes in 2010. Died in June, 2013 with resp failure. Hospice nurse said ALS diagnosis was in her file. Somehow, with all that was going on with her husband who died in March, this got lost and not communicated to the family. Apparently diagnosed 2 1/2 years after having 2 major strokes that left her right side paralyzed, significant loss of speach and difficulty swallowing. I question the diagnosis but the fact remains...

Questions
1. If I were expereincing bulbar onset, would I have good days with my breathing and then some that were notably worse?
2. Is it normal for onset to take place in a location such as the hips? Would I have good days and bad or is it sustainably progressive?
3. Any reccommendations for questions to ask the Neuro or Pulmonologist during my next visits?
4. If I receive normal results from the EMG and NCV and my breathing is normal, I SHOULD assume it's not ALS right?

Lastly, I realize there is probably some anxiety / stress at least making things worse if not the cause. I have been under lots of stress this year but there are days where I feel optimistic, positive and energetic but a lot of the symptoms (especially the fascics in the calves) remain steadfast.

Again, thanks to you all for being here to answer these questions. I realize many of you are diagnosed and dealing with ALS. I wish you all the absolute best!
 
Hi

First of all I am sorry for your loss. Have you read the stickies in this thread. It explains a lot about what you are asking. I am not a dr but bulbar usually involves choking on liquids and slurred speech. Als usually starts distally in a hand or foot. Hopefully your appointment will help you quell your fears.
 
Vickim,

Thanks for the response and your condolences. I have read all the Stickys... some several times. I must admit, there are times when i read them and feel relief as i don't really fit the criteria. I think my own research (trying to stop but in my DNA) and the short lapse of having to wait several months to see a Neuro is what's fueling my need to talk to someone who has been there.

For what it's worth, I have visitied this website about 20 times before i decided to post.

Thanks again!
 
Don't let your fears get the better of you. Web searching is not good and only feeds the fear or creates it. Your appointment will help. Only a dr can give you the answers you seek. We can only offer guesses and conjecture. try and relax, I know easier said than done. We have all been in your shoes, waiting is hard but relaxing will help with some of the twitches.
 
Stress is incredibly powerful, more than most people realize. the 2 deaths you experienced surely made it worse for you. If I were you, I would do 3 things:

1. see your GP and talk to them about anxiety meds for a short time because of what you have gone thru. also have a complete physical and tell him what you are experiencing.

2. See a grief counselor for a few months to help you sort out your feelings, some of which you may be suppressing and making your symptoms worse.

3. contact Hospice again and ask about that diagnosis--who made it based on what criteria. Was it actually a diagnosis or was it just a mention of symptoms. Remember very important! only 5-10% of all ALS is familial so just because mom had it the chances are very slim that you do. I know that some of the symptoms of stroke are similar to ALS in the beginning, but certainly not progressive as far as I know.

I really think you are fine, no als based on everything that you described. I would bet that you heard about the ALS from the hospice nurse and looked it up on line and then started thinking about all the things going on with your body and freaked out. I am not judging you, but that makes sense. When you read about ALS it scares the heck out of you-- and suddenly things get skewed in your head.
 
Barbie,

I hear you loud and clear! I am aware that anxiety might be the culprit. In fact, after my mom's husband died, I did have a full-blown panic attack that was ER worthy. I was given Xanax but barely used it. Just too stubborn I guess...

And, you are mostly accurate on your theory. I did research my fascics and when I saw ALS, coupled with my mom's diagnosis, whew... Not too fun!

Hopefully I'll receive good news from the docs and move on. If they confirm no MND, I guess I may try the short term med approach. Counseling is probably in order as well. Thanks for your input!
 
It's scary how similar our symptoms are! What surprised me the most is that we both have pain in the plantar area of the foot. Does it affect both feet? For me, it's only the plantar area of the left foot.
 
Jeb,

I don't have them too frequently (several times per week). I do have them in both at the same time or one or the other at other times.

Have you been tested/diagnosed with anything?
 
Had an EMG and nerve conduction study done. EMG was normal, but nerve conduction study revealed neuropathy. Have an appointment with my doctor tomorrow to discuss it and to ask him to refer me to a neurologist.

Scared and nervous.
 
I hope the visit goes well. I have heard of people having Neuropathy and not having ALS so don't get too worked up. As I understand it, Diabetics develop it.

Let me know how the visit goes! Wish you the best!
 
Ditto what Barbie said. Stress chemicals can make the body do weird stuff.
 
I hope the visit goes well. I have heard of people having Neuropathy and not having ALS so don't get too worked up. As I understand it, Diabetics develop it.

Let me know how the visit goes! Wish you the best!

Well, I just got back from the visit. Got referred to another neurologist. I've already been tested for diabetes, vitamin levels, folic acid, etc., so I know that's not the cause of it.

The doctor just said "maybe it's idiopathic." I guess if it's not, he has no clue what it is. My neurologist's appointment isn't until November 26th, that's the earliest I was able to get.
 
I have had neuropathy for nearly 7 years and I don't have als. I saw 3 neuros before I got my answers. Don't fret, hang in there.
 
Jeb,

I too have had all those things you mentioned checked and told by my GP that maybe it's a virus... Which means, he doesn't know either.

One thing that I forgot to mention in my original post is that I had seen another Neuro before my current one. He referred me to a Neuromuscular Specialist. After waiting close to a month without contact for an appointment, I called the office only to find out the guy the Neuro referred me to hasn't practiced in over 5 years.

Point of statement is the original neuro said he did not think ALS. But I lose trust in people quickly when they make bonehead mistakes like that. It's important that you find a doctor that you trust, else you'll second guess everything they tell you.

Good luck!
 
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