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Bestfriends14

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I can understand your fear and I'm glad you were able to catch it in time. The difference here is, you've been cleared of ALS and you don't have symptoms. That is a huge difference between then and now.

Life is too short; don't live in the past and don't diagnose yourself with terminal illnesses you dont have. Go live the life that you were so blessed to have. You got a second chance 5 years ago; please honour that.
 

wishmobbing

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The story from five years back is a very valid reason to have high anxiety regarding new symptoms and can cause health anxiety. It's good you're seeking help for that!
You've been cleared of ALS from all sides, but I understand now why you can't just scratch out that fear.

Let's try to approach it another way, let's for a minute say you have ALS. There is just no big benefit (like not dying) in catching it early. Progression will run it's course anyway, diagnosed or not. So why worry? At one point you would be diagnosed (because there is no ALS without clinical weakness and findings in an EMG) and then you would still die from it eventually. So if you were to develop ALS at some point in your life the time now could be the best time to travel, do sports, eat crunchy and chewey delicacies and generally just live.
 

Aaronmandevill

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Thank you for that point of view wishmobbing. My main things are trying to plan to alleviate suffering as much as I can. Trying to figure out how to ask for the proper equipment I will need as soon as possible. Also trying to start riluzole or signing up for the stem cell trial asap. But I do understand your point and are right about trying to enjoy life. I’ve been doing my best to try and enjoy things while I can
 

Bestfriends14

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You need to have an ALS diagnosis to access Riluzole and clinical trials for those with ALS.; you are neither. You are really stretching at this point. Go live your life! No need to reply.
 

lgelb

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You cannot self-diagnose by reading others' stories. There is always much more to them than you will read.

We, the people that have actually been affected by ALS (and you have had opinions from both the bulbar and limb onset sides), are telling you that we don't see it in your story.

I applaud your proactivity in getting your lymphoma addressed five years ago, but you can't extend that to this as a means of proving that you have ALS or anything like it.

Let us know how the neuro visit goes on Wednesday.
 

Aaronmandevill

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@lgelb Thank you lgelb, now that I’ve been a lurker here much more often I’ve seen just how much you’ve contributed to this community and you have positively impacted so many individuals, myself included.

Unfortunately I learned the reason I wasn’t being taken as seriously at the military clinic today. My neuro pointed out they have multiple members in each week faking symptoms in an attempt to be discharged from the military. I had a laryngoscopy today that shows my left side vocal cords are not moving. The neuro noted he doesn’t know if that’s from birth. So I’ll need to track progress with the ENT. In the mean time I am transferring my medical records for a Mayo Clinic evaluation out-of-pocket. After my Mayo visit I can post some final results on my situation. Thank you all again for everything you do here on the forums, the community here is an amazing thing.
 

Nikki J

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Faking is an issue in civilian neuro practices too. My clinic actually has a protocol for testing this so it must happen a fair amount I am sorry you feel it has impacted your assessment but it wouldn’t change your emg. I hope you get answers soon whatever the final results are. Again it is really important to live your life and not let it consume you in the meantime
 

KimT

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Aaron,

Good luck at Mayo Clinic. If your visit works like mine did, they will do a bunch of tests which will probably include a swallow test in one or two days. You may see multiple doctors, depending on their review of your prior tests, your clinical exam, and your history. I saw a neurologist, ENT, and speech pathologist all on the same day. The following day I had a pulmonary function test and also saw an autoimmune specialist plus a ton of blood work.

I hope everything turns out well for you. Everyone is different. I'm hoping they can identify the problem(s) and treat them.
 

Aaronmandevill

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Hi everyone, I was holding off on posting but wanted to give an update and ask a question. I saw the military neurologist again who essentially told me all my symptoms could be from birth or faking. I had a laryngoscopy and it shows left side paralysis of my vocal muscles. My tongue has started cramping and it’s been harder to talk. My toes still continue to weaken on the left foot. I also started having shortness of breath and can only sleep with my head elevated. If I sleep flat or on my side without elevation I wake up multiple times with my hands numb.

Because I contacted the inspector general I got someone higher up to give me a referral to a civilian doctor, but I have to choose who to activate it with.

I live in San Antonio but I want the most experienced clinic to see me for the second opinion. UThealth is here in town but I’m not sure about them. Houston has Baylor and Methodist. Any advice on which clinic to use the referral with?
 

Clearwater AL

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Aaron, you seemed to have cornered the rare like us.

It is rare the VA would refer you to a civilian neurologist. Good. But....
I hope either you insist or they refer you to a certified ALS neurological
facility. You have some very good ones in your area.

Maybe one of our knowledgeable will give their opinion of the better.

I've been dealing with the VA going back to 1978... I went to Washington DC
with a civilian lawyer to the Veteran Court of Appeals and won my case
concerning Agent Orange. It took a few years.

But... when it came to ALS with the diagnostic code it went quick and smooth
in a short time.

I hope you find your questions answered.... be patient.

Another but... there's not much more we can do to help you until you have
a work up and EMG hopefully as I mentioned above. Until then... when you
can post an EMG report with the Summary/Conclusion.
 

Nikki J

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I thought you were going to Mayo? We have had members seen at Baylor and Houston Methodist I know. Methodist used to have a 3 day evaluation process for ALS - though sometimes they cut it short if they reached a conclusion sooner - I don’t know if they still have that program
 

Aaronmandevill

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@Nikki J Because the notes from my military doctor said something along the lines of “this person has a lot of anxiety and is recommended for intense psychiatric treatment”, Mayo turned down the case. But having the civilian referral now I can choose the hospital. It sounds like Methodist is more frequently mentioned on the site so I’m leaning in that direction. Each day it seems like a new symptom so I’m really hoping to get in soon. I saw a study recently about poor prognosis (8 months) with high ferritin (>250). Mine is high from cancer transfusions at 360.

@Clearwater AL Thank you so much for the reply, I know how hard it is to respond. I have followed your posts in the VA section and I have written down so much of your information for if I need to apply for benefits with VA. Currently being active duty I can’t use VA stuff yet and I’m under Tricare insurance. The chief medical officer of the Air Force called me and said I got approval from a 3-star general to go to any clinic I want, even outside of Texas. I was just looking here locally because if I have follow up care with them it would be easier being closer. I’ll make sure to post the EMG as soon as I get it.
 

Aaronmandevill

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The referral got approved for Dr. Stanley Appel at Houston Methodist and they are working out scheduling now, but looking like 6 weeks.

I was able to get an appointment with a local neuro (Dr. Wong, says triple board certified) for next Friday at an out of pocket expense.

I had a full swallow study the other day and the pathologist showed left sided upper swallowing weakness and regurgitation (thick liquids would get almost to stomach then come back up 6 inches needing another swallow). She also showed pill getting stuck around the same 6 inch area only cleared by a full glass of water. She said she isn’t concerned because my upper airway is protected and to follow up with neuro. I’m worried my right side is starting to get effected since I have to drink to push down even soft things like shrimp. I’ve heard taking pills with applesauce is good, does that mean I should grind them or just take whole pills with it?
 

lgelb

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If they are not on the Do Not Crush List, you can crush them in applesauce, yogurt, or pudding. Otherwise, they can be with one of these but not crushed.

Dr. Wong looks fully qualified.
 

Aaronmandevill

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Was scheduled to see Dr. Wong today. He unfortunately got covid and could not see me. He did agree to do a telehealth video call from this house.

Based on all my symptoms and prior test results, including looking at the atrophy on my hands, he gave me a possible als diagnosis and started me on riluzole.

He said there are a few mimics he’d like to cross off the list before calling it probable and needs to do an EMG hopefully this week. He mentioned some kind of immunological disease that attacks the nervous system with the use of B cells, similarly to my B cell lymphoma. He wants to do a spinal tap but I hope we can diagnose it before then. He also mentioned isaacs disease, but at this point I’m all researched out and I’m just trying to enjoy this weekend with all my friends and coworkers.

Today I can breath, walk, and talk, and for that I’m grateful.
 
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