frighten and foolish back

[Becazican]

my last thread was closed
I have been going round and round with notorious twitches and feet achy weirdness for a while below is time lin
nov16 bilateral feet feel strange
jan 17 emg diagnosed with neuropathy with normal ncv
may17 emg diagnosed with sensimotor poloneurapthy with normal ncv
aug 17 went to ohsu in oregon saw the head of peripheral neuropathy and als dept all emg are on previous post.
aug 17 mucus retention in throat, never could clear it, followed up with ent who cat scan and endoscope(showing mild chronic irritation) also had a modified barium swallow in dec 17 , normal
oct 17 columbia presbyterian emg below
dec 17 johns hopkins emg below
jan 18 had laminectomy,

Heres my problem and i really didn't want to post but at wits end. first i thought limb onset, twitches and all which have died down quite a bit but have them from waist down very rarely about even my anus(tmi). with the mucus i find myself thinking bulbar and i cant seem to get it out of my head , i am seeing a therapist , this is destroying my life. someone i met on bfs, vince, who recently passed away a few months had the mucus thing the way i have only he had other issues with weakness( i was so sad to read his last few posts , such a nice guy). i don't know where to turn to next , i have been to some of the best i think in the country as far as neuromuscular. any suggestion would be greatly appreciated . i know anxiety could play a large part in this, i have lurk on her for months trying not to bother anyone and doing research ,it has scared the hell out of me. the john hopkins dr and my local neurologist did not want to do any bulbar test as they said you have a normal swallowing and you show no fasciculations in the tongue so i'm not needling you there. my joints hurt and feet still feel awkward, touching anyplace below my waist i feel tingling in feet i know not an als symptom. nikki has been nice to answer before and i really am at wits end about this or else i would not have bothered the people on here who are dealing with so much. thank you for listening and words of encouragement or yelling gladly accepted

 

[Nikki J]

I honestly don’t know what to tell you. You have been cleared of ALS. Worrying about bulbar after starting elsewhere is a common anxiety pattern here.

Vince, may he RIP, had much much more than mucus as an issue before diagnosis. I remember his first posts well and remember being concerned though I hoped for another outcome.

Your local doctor and your JHU doctor told you no. Believe them. Please.

 

[Becazican]

Hi Nikki , yes poor vince had lots of issues and was not comparing myself to him, just the mucus issues has gone for months and they say there is nothing wrong, yes i have seen where anxious people have jumped from limb on set to bulbar and i've been trying to keep a rational mind about this, i know feeling is not als but i have lots of joint pain, most likely being anxious and all, i am trying to believe them my gp literally yelled at me about there is no cure for als , stop going down that alley 5 neurologist have told you the same thing. unfortunately as you know emg are dependent on the person doing them so they always seem to differ a little bit. i am diabetic and my feet feel like they have neuropathy but i am told no. thank you for listening and i am sorry for taking up your valuable time

 

[ShiftKicker]

It's difficult to have such a long search for a source of symptoms and I do sympathize. However, as Nikki has stated, picking out a singular symptom that someone else with ALS experienced as a way to continue to worry you have ALS is a hard sell and not really logical given you have a whole host of symptoms that indicate some other problem entirely.

The concern here is that an ALS forum is not set up to help people with other types of health concerns. ALS is the focus here. It's what people here know and experience. Other unidentified neurological/neuromuscular stuff can't be addressed or supported here. The only thing the folks can really do here is to urge you to continue seeking answers from your doctors.

 

[KimT]

If you ingest dairy (milk, cheese, yogurt, etc) your mucus thickens. If you drink enough of it, in some people, it can pose a problem. Try staying away from dairy for a month and see if you notice a difference in the mucus issue.

I'm sorry you are going through so much anxiety. I really understand because I suffered from anxiety in my 30s and had all kinds of seemingly unrelated symptoms. It was so bad I went to Mayo Clinic in the 90s and they only found a benign heart arrhythmia, anemia (from losing so much weight by worrying), and clinical depression. They also said I had fibromyalgia which can cause all kinds of pain. After that workup, which lasted 10 days with 6 different specialists, I recovered. I believed them and I lived a healthy 25 years without anything but an antidepressant and a small dose of something to control the arrhythmia.

The reason I'm telling you this story is that, at some point, you need to believe your doctors. Johns Hopkins was one of the places I went for an opinion and they really knew what they were doing.

I looked at your EMGs and none of them show what we would expect for ALS. Like Nikki said, EMGs will be slightly different depending on who and where they are done. The first one I had, back in 2014, pointed to ALS. I've had them at four different places and they all were similar.

If you have Type 2 diabetes, you might want to get on a better eating plan, exercise more, and get your allergies tested.

If your anxiety is out of control, please get counseling and consider a med to treat it.

I wish you the best.

 

[Becazican]

thanks kim for insight of your trip in anxiety. i have tested for all kinds of allergies, nothing. i am seeking counseling and started on anti depressant with a hit of klonopin. actually i tried to get into mayo but they refused to see me after looking at my records as they said they couldn't add anything to it. someday i have to snap out of this , my life right now is miserable shell of what it was.

 

[Vincent]

My God, your tests all say normal with pinched nerves in your back. Several neurologists have said you don't have ALS. Now you are asking random strangers on the internet to diagnose you with a terminal disease that has been ruled out by specialists. Let that sink in. You are a reasonably healthy individual. Your issues are between the ears, and they are ruining what should be a happy life. I am actually dying and my mental hygiene is way better than yours. I even have time to reassure healthy people. Get help with health anxiety, it is the only diagnosis that jumps off the page.
Vincent

 

[Bestfriends14]

Enough already, it's time to move on. You're carrying on that this is ruining your life, yet you have no terminal illness. Think about what you are typing before you hit enter. You're whining to a forum of terminally ill people who have not fallen apart because they have been diagnosed with ALS. Yet you, who have been told countless times you do not have it, are falling apart?! Seriously?! Your life is a miserable shell because of you and only you.

Perhaps a new hobby would be beneficial or volunteer with those less fortunate than you. You have your health; stop being so ungrateful for it.

 

[Becazican]

My God, your tests all say normal with pinched nerves in your back. Several neurologists have said you don't have ALS. Now you are asking random strangers on the internet to diagnose you with a terminal disease that has been ruled out by specialists. Let that sink in. You are a reasonably healthy individual. Your issues are between the ears, and they are ruining what should be a happy life. I am actually dying and my mental hygiene is way better than yours. I even have time to reassure healthy people. Get help with health anxiety, it is the only diagnosis that jumps off the page.
Vincent[/QUOTE

Thank you for the comment yes you are absolutely right, just some of these symptoms cant be explained by the pinched nerve in my lumbar area, i start therapy on Tuesday. Thank you for taking the time to talk to me.

 

[Becazican]

Enough already, it's time to move on. You're carrying on that this is ruining your life, yet you have no terminal illness. Think about what you are typing before you hit enter. You're whining to a forum of terminally ill people who have not fallen apart because they have been diagnosed with ALS. Yet you, who have been told countless times you do not have it, are falling apart?! Seriously?! Your life is a miserable shell because of you and only you.

Perhaps a new hobby would be beneficial or volunteer with those less fortunate than you. You have your health; stop being so ungrateful for it.

Thank you for taking the time to reply , i am starting therapy, just cant explain the symptoms that are still going on. Yes my life has turned from a great life to a miserable shell and i have to take respondsibility for it. It took me 6 months to come back on here and show those reports because i didnt want to bother people, just today was a low point.

 

[Becazican]

Thank you to all who have replied. I am well aware that it may seem like I took one symptom and ran with it or that I seem like I’m whining, compare to people on this board I guess I am. I’ve investigated the mucus problem w dr found no reason for it. My body twitches are less but still there ,left leg has awkward movement and yes I have pain in my feet which supposedly is not an als symptom. I will not post anymore until I have to eat crow or ask for advice if I was to be diagnose. Thank you again. To anyone I have offended I’m truly sorry. May God bless everyone who is dealing w this terrible affliction

 

[Atsugi]

Thank you, Becazican. Good luck to you.