Neurologist Scheduled May 18th

[Riggz10]

For all of the people who have told me to get off this site or Why am I here? I apologize to you and ask you to disregard this post unless you have kind insight. This is for Nikki, Laurie, and Mike...and a few others who have helped me along the way. I have scheduled an appointment for May 18th with my trusted neurologist because I cannot hide this anymore. My right arm is so weak, my right foot might be the worst part now, my breathing, and yada yada yada that you've all heard before and assured me nothing was wrong.

The thread posted in the Do I have ALS Forum by profeJ from Santa Fe has truly made me realize that probably something is really wrong here. His timeline is insanely similar to mine. Started at same time. If you look back at my first thread where I reported that it all started with doctors mentioning "tennis elbow" and "carpal tunnel". Same with him. And many advisers on this site told him "No way". And now he was diagnosed two years later. I am crying typing this but I wanted to send my condolences to profeJ in Santa Fe. I am so sorry for you.

My wedding is on June 16th and I am terrified. Walking is painful and stairs are the worst. By the time i get to the top of any staircase I can't breathe. My right foot is so heavy and clumsy. I can barely jump and barely run. The twitching I have now is all over and is sometimes so powerful in my arms. The dexterity with my right hand is getting to be a joke. My slurring happens here and there and I clear my throat, have excess saliva, and get hiccups almost daily. All of the people on this site always ALS comes and it never goes away. Well none of these symptoms have gone away. I did the counseling thing. Don't work. This isn't anxiety. I'm a 32 year old who was once a big time athlete who can't play any sports now. I almost always want to sit down. Standing is a chore.

I hope to hear from those I've mentioned and from anyone else that would like to chime in. I see my trusted neuro on May 18th. I was holding out hope that everything would be OK and that I could just get married soon with no worries. But each day is such a struggle. I can't believe I'm gonna say this, but I am so scared to get married and then get diagnosed. I would feel so sad for my fiance. If anyone has something nice or helpful or anything...please feel free.

 

[Nikki J]

Hi congratulations on your impending wedding.

Please prepare very carefully for this appointment to get the most out of it. Consider carefully the questions you want to ask , what the answers might be and the follow up questions you would have for each scenario. Write things down. Organize, refine, and repeat multi times. I have printed out the initial list of questions and handed them over to my doctor

Do the same with your symptoms. Be very organized, and very specific as to time frame and what you can and can not do

Your primary question should be what is wrong with me. Also what is in your differential? What tests do we need to figure this out?

We had discussed that you were going to ask Dr Trusted if you should see an ALS specialist and also you were going to explore functional disorders. Did that happen?

Have you had pfts, mri, emgs and other tests? When were the last of each and what were the results?

I believe you did have at least one emg in the past and the emg portion was normal There was a question on the ncs part only. Profej 's first emg was abnormal

 

[Riggz10]

Thank you Nikki, as always. I have not seen the trusted neuro to talk about anything that you told me last time. I have been putting it off but I feel that I must go before I get married. I will do everything that you told me. The fact that I haven't been to an "official ALS Clinic" is something I cannot get out of my mind - even though I have seen neuromuscular doctors who say they specialize in ALS. I just haven't gotten any better in the 2ish years - and just weaker as the days go by. Scary how all this goes. I guess I will let you know what happens on the 18th. If anybody feels like chiming in please feel free.

 

[Angiegal]

Riggz,
Hi
Let me say, when you 1st started posting, I hadn't been seen by a doctor..... I am a relatively new chum on this site, compared to you....
You have been complaining for all this time about "feeling weak".... Your arms, hands, legs, etc..... I'm sure you know that's not what ALS is.
If it were me, I'd REALLY look at your anxiety.... Your brain runs your body..... if your brain THINKS there's a problem, it's amazing how soon there is a problem.

Don't you think that by NOW your weakness would have progressed to a "not working at all?" For reference, since you began posting, I have gone through the diagnostic rollercoaster, have NO use of my dominant arm/hand, have measured weakness in my non-dominant arm, and have issues with my ankle (if I'm tired, I tend to fall on my face.)
Look into the anxiety..... if not for you, than for your fiancee...

Angie

 

[Lixen]

Riggz, ‎

For what it's worth ProfeJ's first post was very concerning to me personally and it came as absolutely no surprise when he was diagnosed. NONE. To be honest with you I would have been shocked if he hadn't been diagnosed. You have NOTHING in common with him. I can promise you he would give anything to be in your shoes right about now. ‎

The only thing I can see that's progressed with you is your lack of self awareness. How many neurologists have you seen now? How many EMG's? How many will it take to convince you you're not dying of a terminal illness no matter how badly you seem to want it to happen? You're not going to be THAT GUY who has 10 clean EMG's and is suddenly diagnosed with MND at the 11th EMG. Sorry, you're just not that special.

You do not have ALS.
You don't have it TODAY.
You won't have it a YEAR from now
You won't have it 30 YEARS from now.
‎
So many here would love to have been told what I just told you, but not you. You probably feel picked on and dismissed. Hint: that's not a normal reaction. It's not normal to repeatedly solicit input from the gentle souls suffering from the very disease you have an irrational fear of developing. You have NO IDEA what they're going through, if you did you would be ashamed to ask anything of them. They know you don't have the slightest chance of developing ALS, yet they respond in kind anyway. I'm ashamed for you. ‎

All I can say at this point - and I mean this totally out of concern for your well being - if I were the administrator of this forum I would have banned you well over a year ago.