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salsajas1

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Houston
07-19-2015 02:25 PM - original post unanswered?
I'm scared I have ALS....Symptoms stated 1 year ago headaches, fatigue, and vision changes. In February I got bad left heel pain and knee pain. In April I began with joint pain in fingers, wrists, elbows on both hands....now past three weeks itchy face especially around nose. Joints pop alot. Mri was good, blood word good other than slight anemia and high ldh. Please tell me this isn't ALS. I have one year old please help. Seen nephrologist, hemotologist, and rheumatologist they all said no.
Let me be more specific:
Symptoms that began 2011:
1. Bad headaches sometimes 4 to 7 times a week.
2. Lump feeling in throat would last a couple of weeks then go away for a month or two.
3. Vision problems at times blurry.
4. Extreme fatigue.
Year 2013:
Bone, joint, muscle aches.come and go but especially in mornings.
Lower back pain.comes and goes
Lower legs calf area on both legs would feel numb at times come and go.
Bad tennis elbow diagnosed that lasted for 6 months that went away.
Year 2015
Muscle twitches or spasm that come and go especially in upper legs, and on biceps on both arms predominately on right and at times wake me from sleep. But stop if I push on change limb elevation. Come and go.
Arms fall asleep as if I lose circulation. Atleast 3 to 4 times a week.
Nausea especially in mornings.
Ears feel clogged from time to time.
Most symptoms come and go but most of time together with other symptoms.
February 2017:
lump feeling in throat back never gone away getting worse more intense bothers me alot constantly drinking or clearing throat to try and help this.
Extremely dry throat and mouth, with itchy scratchy throat.
Light electronic shock like sensations that are in hand and legs happened 6 times.
Weird chest pains feel like sharp pains, sometimes accompanied by difficulty breathing.
I've been to 3 neurologist, 2 rheumatologist, 1 nephrologist.
Had 3 MRI'S first in 2013, 2015, and 2016 with and without contrast, EMG done by Baylor college of medicine 2015 and one by VA in 2016 both good, had tons of Labs. Dexterity good, strength good, tongue function normal, can still walk on tip toes or heels. Normal routine just lasted 8 hours coaching a track meet in houston heat. Nothing diagnosed pissed cause they say ANXIETY but nobody in family has ever had anxiety. So lost having bad thoughts please people respond.
 
You need to continue to seek treatment from doctors. First off- regardless of if you believe the doctors or not, you do appear to have anxiety. A proper psychiatrist can help you sort out the physical symptoms from the anxiety related symptoms. As you work with a psychiatrist, continue to work with your doctor to find causes for your symptoms.

An ALS forum is no place for you as it will continue to feed the anxiety that is present. While you are denying anxiety, it has obvioulsly brought you here many times in the last two years. Each title in the threads you have opened in the past two years are all about being scared- this is anxiety.

All of the symptoms you have listed can be caused by many things. It's clear you have seen many specialists. If they are saying they don't see ALS, and the symptoms you have posted are really not indicative of ALS, why insist it's ALS? Popping joints, headaches, nausea, tingling, intermittent pain, plugged ears, etc- not ALS.
 
The reason I keep asking about ALS is three fold do I suffer from anxiety because of undiagnosed medical condition sure I think anyone would after 6+ years of pain and symptoms affecting quality of life.
1st I had a form member tell me he started with systoms just like me.
2nd The VA neurology nurse I saw last asked me if anyone had been evaluated gor MS, FRIBRO, and ALS.
3RD I've been trying to find answers and I GOOGLE alot even though I shouldn't. First thing that pops up is ALS.
I'M SORRY FOR MY QUESTIONS, but I am emotionally exhausted trying to find answers. I've reached the lowest I can possibly reach I'm so tired.
God bless. Sorry just trying to find answers.
 
I see no reason to suspect MS or ALS based on clean EMGs and MRIs coupled with your symptoms.

I can't say if you should have or have been evaluated for fibro and CFS, but if your rheumatologist isn't on point, find another. Houston has many.

That takes care of your 2nd point. #1 and #3 point to potential health anxiety, and again, Houston is rife with counselors.

Best,
Laurie
 
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The more you focus about perceived or insignificant real symptoms (unrelated to ALS), the more persistent they will get. Anxiety. Then, they become a cycle of re-occurrence often creating more corresponding symptoms to the disease you believe you might have from going to Dr. Google. Then the real doctors you finally see have to unravel Dr. Google’s mess with months, sometimes a year or more of appointments, blood work, tests, procedures, observation and exclusion which they’ll go along with being they, and all involved, get paid along the way in your attempt to mask and not accept treatable and curable anxiety.

You’re too attuned to common bodily sensations. Many of yours… most people ignore. Every ache, twitch, pain, cramp, occasional weakness, perceived weakness and with many happening together is not evidence of something going catastrophically/terminally wrong. Don’t feel bad… this syndrome often happens to Med students and or people closely affiliated in some way within sphere of the medical industry.
 
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In short, clean EMG's = NO ALS. Please don't go looking for the .00009 % for whom "that was not the case". Our own Doctor, when I asked him said there was literally NO physically possible way to have ALS and a normal EMG by the time symptoms have appeared. Even in Bulbar cases, if they actually test the head/neck area the results will be abnormal there for sure and 99% of the time also in the rest of the body in one or more areas. I asked because there is SO much discussion on that here.

So, to review IF indeed your EMG's were normal, you do NOT have ALS. Sorry to be repetitive but it can't be said enough. Some non - specialist Doctors even seem to be ignorant of this simple fact.

Please do find the source of your issues, but ALS, with normal EMG's is not going to be that source.
 
Thank you this helps alot.......they never TESTED face or neck but did test both arms and legs. God bless.
 
Salsaja1, try and remember this...

Those who dwell on on the past suffer from Depression.

Those who dwell on this moment, today, tomorrow and the future... suffer from Anxiety.

A combination of both is a long word but simply is a severe mood disorder that really requires professional help to resolve. Not saying this is your problem. Hope things work out for you and looking back you find tomorrow was better than today.
 
Sorry that my medical conditions are a point for your criticism. I'm a fairly intelligent person who has had string symptoms that according to Google and other sites who evaluate symptoms pointed to ALS. I'm just tired if people saying it's anxiety it almost feels dismivise of pain, fatigue, and STRUGGLES I'm having. I don't want it to be ALS but at this point I'm just looking for answers. I've lost my home due to mounting medical bills, and still no answers. I lost my insurance because healthcare.gov Denied me because I was a partially disables veteran forcing me use VA system. My average appointment wait times is between 3 to 5 months.....thats why I feel lost.
 
You will note that no one is denying you have worrying symptoms or that you are unwell. The people here are rejecting your assertion that you have ALS, not deny you have concerning symptoms. Continuing to argue when many people have tried to offer both assurance and advice indicates a fixation on a disease you do not have and a reluctance to explore other options.
 
Give this some thought as you wrote,

"person who has had string symptoms that according to Google and other sites who evaluate symptoms pointed to ALS. I'm just tired if people saying it's anxiety."

(According to Google and other sites).

Those "people" you refer to are professional people who just may recognize what you are denying yourself. I'm just trying to help... let them help too.

If you are a Disabled Veteran your medical care from the VA should be at no or very little cost. Many people who post on this Forum and are not veterans with VA Med availability often wait months in between Neurological appointments.

Again, hope the VA helps you to better tomorrows.
 
Hi

I read through your post the main thing that jumped out at me is that you have said that you have been having symptoms since 2011 and that your symptoms have come and gone. ALS does not come and go it is an unremittingly progressive disease.

You have also listed an awful lot of symptoms that don't point to als vision blurring headaches pain clogged ears numbness electric shock feelings etc. You are here because you read on google and other sites that these point to als? So you came to people who have experienced als or a loved one suffering from it. Those people have said it doesn't sound like als. Your doctors don't think it's Als.

We are in no way trying to be dismissive of the discomfort and distress you are going through. It must be horrible for you we get that! We are going through something horrible too, it's just that we don't feel we can help you as you don't seem to have the illness we have.

Being in a diagnostic limbo is very stressful the only thing I can advise is to keep pushing your doctors. Being in this situation is scary and will cause anxiety so getting your doctor to help with that either via medication or counselling is always a good idea. If you can get that under control it stops anxiety symptoms getting in the way of the diagnostic process.

Good luck I hope they find some solutions for you soon.

Wendy
 
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