Questions, concerns

[runner430]

I am a 27 year old who has had some recent complications and questions regarding ALS. I have read through some of the posts that have similar questions, but I am not sure where my "illness" falls. Any help is appreciated...

It started off with neck pain and tingling numbness on my right side. Then one night I felt like my throat closed off and I couldn't breath well. Ever since then I have had to take short breaths. Walking more than a 1/2 of a mile makes me feel winded and like my chest could explode. I have not had any problems chewing but then again have not had much of an appetite. I have also not noticed any problems talking. I do have an inconsistent cough and a phlegm feeling in my throat and my tongue has a white coating or is "hairy." I have also noticed some right side weakness but can walk without tripping.

I have also had troubles sleeping. I wake up with a burning sensation all over and my right side feels heavy. It looks as though my right side is smaller but I can still flex muscle. There is some twitching on occassion while at rest.

Finally I have had some jaw pain when opening and closing and some numbness on the right side like I can't feel the muscle.

I had an MRI but have yet to get the results. Could this be bulbar onset? Or ALS in general?

 

[patricia1]

No
Sounds Like Anxiety

 

[Al]

Hi runner. Your age is a good factor for you. Your symptoms don't really sound ALS related to me. I wwouldn't want to speculate on what it could be. Sounds like you're seeing a doc so that's better than trying to diagnose yourself from the internet. That will make you crazy.

AL.

 

[runner430]

Thank you. I now have been experiencing a lot of upper chest pains and some twitching on my right rib cage.

 

[runner430]

And now after talking throughout the day my throat has become sore. Any thoughts, anyone?

 

[CB1977]

Is it sore like a sore throat or does is ache?

 

[runner430]

Like a sore throat and I have a dry cough that's fairly inconsistent.

 

[BethU]

Hi ... it sure isn't bulbar onset.

Bulbar onset symptoms would be slurred speech (sounding drunk), trouble chewing, difficulty swallowing (i.e., liquids or solids going down your windpipe, choking and coughing after each swallow) or delayed swallowing ... taking food or liquid into your mouth and being unable to make your throat muscles work for 30 seconds to a minute or so. Also, food or liquids sometimes squirting out of your mouth when you try to swallow. Bulbar could include an unusually dry mouth or excess saliva, thick saliva, choking on your saliva, and drooling.

Among your symptoms, my (uneducated) guess is that chest pains, jaw pains, neck pains, and shortness of breath should be your immediate concern. Those could all indicate heart problems. Please get checked by a doctor.

 

[runner430]

Well my MRI came back normal. I still feel like something is going on. I am having pain in my right arm and leg and could barely open my hand this morning. Sleeping is still terrible. I get pain in my leg and hip. My neck hurts arrrggghhh. It's too frustrating not to have answers.

 

[Zaphoon]

Sometimes there are just no easy answers. If your problems are neurologically related, patience is a virtue. Let your doctors do their business and handle the investigation regarding your symptoms.

One thing is for certain, you just cannot get in a hurry with these matters. Many on this forum have had to wait for years while the doctors went through the diagnostic process before finally coming to a diagnosed. In some cases, a diagnosed never comes. Odds are, If there was something seriously wrong with you at this point, I'm sure some kind of alarm bells would have gone off in the mind of your doctor.

Let your doctor(s) do their business and trust them. Physicians really do not appreciate a lack of confidence or trust on the part of the patient.

Zaphoon

 

[runner430]

I understand that and it's completely disconcerning to hear the amount of time that some people have had to wait for answers. That is the part I am having the most trouble with. I feel like everyday I wake up with a new symptom, however, my doctor does not want to see me until after my neck MRI which is scheduled for tomorrow. I feel like my throat wants to close on me, I can't talk correctly, and the pain in my neck and back just continues to get worse. How does everyone find the courage to keep looking forward? I am finding that to be very hard. I have my faith but unfortunately it doesn't keep me from depression.

 

[jennibf]

I'm sorry you are having those symptoms and I can completely relate to the neck pain. I also have hip pain, muscle cramps and constant twitching. I fatigue easily and my left leg often feels like it is just going to give out (and almost has several times). So I say all of that to say so many of us here know.

We have to have the courage to go on. We do it for those we love and those who love us, we do it for the love of life itself.

Realize that we may very well be in for years of testing. I have to also say that is more appealing than a quick diagnosis of ALS because of a fast progression.

 

[runner430]

This is true but it seems as though everything just keeps progressing, which is what makes it scary. I noticed last night that my tongue has ridges on the sides now, I can't sleep on my back because my right ankle/leg feels heavy at night but if I sleep on my right side it hurts. Nothing is seeming to work to make me feel better. Not even trying to think positively.

 

[lostinlouisville]

I am sorry for your problems, but thinking positive can not be an option, I have 7 kids and I am going to give you some tough love. Think positive it is all we have that we can control, you said you have faith, I will not assume which one that is but hold on to it with everything you have. There are few things in life we have control of and I have learned that the hard way, being much to controlling myself, but the things we can we must try to, like a positive attitude, how we treat others, etc. I will be praying for you and try to keep the joy, faith and strength, that is a God given gift, take it.

Renee

 

[BethU]

Runner ... you asked: How does everyone find the courage to keep looking forward? I am finding that to be very hard. I have my faith but unfortunately it doesn't keep me from depression.

I think most of the people on this Forum have learned to take it one day at a time. I know it's a cliche, but it's a cliche because it works. I don't look forward too far down the road. Neuro problems are so overwhelming and so complex that I can't worry about all the possibilities. Today, I'm OK. I've got all these crazy, depressing things going on wih my body, but aside from that, Mrs. Lincoln, I actually feel good today. Screw the "symptoms" ... today will never come again. Don't waste it!

Try to concentrate on just the tasks that are immediately ahead. Today, you're getting an MRI of your neck. This will give your doctor valuable information. This is a good thing ... your doctor is concerned with your symptoms and is investigating the cause. Trust your doctor to know what to do next. Keep track of your symptoms, and work with the doctor on finding the answer.

Good luck on the MRI.