Not "Officially" Diagnosed...Yet

[berniec74]

I am petrified. Too long of story on how I got here...years of back and shoulder/neck pain from car accidents and now I know some degenerative issues. Had spinal fusion surgery on 2/29/12....all went great and it was important to get it done.

However, I associated the leg weakness in my left leg and foot drop to nerve compression....4 months after surgery I was having a nerve conduction test. Then had to wait 2 months to get to neuromuscular specialist. All this time my head was in the sand....I just figured nerves were taking their time to regenerate....don't worry...maybe I even had nerves that may never work again.

Go to neuromuscular specialist and spend the day there getting the physical assessment, discussion, nerve conduction and EMG. They did do an upper MRI as well since my surgery was focused on lower back and we had MRI pre-and post-op he said he wanted to make sure there wasn't something in the upper area pinching, etc. Unfortunately they didn't find anything.

I say unfortunately, because I still have NO idea...what he is thinking. I had enormous amounts of blood taken and a entire battery of tests.

One week later he says "I have strong suspicion you have ALS". Needless to say I was devastated. Then he said there was not really anything to do other than come back in three months which will be 12/20. I have had a second "opinion" and am going to a third coming up. I want to be sure diagnosis is consistent.

With that said, I am VERY lucky to live in St. Louis. My spinal fusion surgery was at Washington University/BJC so I was already in the system and Dr. Al-Lozi in the neuromusclar division is who has the suspision.

I have taken it upon myself to get a second opinion from other local medical center and I am scheduled to go to St. Louis University for another opinion on 12/10. The second opinion neurologist unfortunately agreed with the initial suspicion and said .... had I seen you first I would send you to Wash U. - you are good hands no matter what the final diagnosis.

I could write a book here! I will stop for now. I am a 49 year old single person luckily with an enormous network of friends and a lovely immediate family and extended family. But....since nobody has officially diagnosed me I keep living in this fantasy world that I won't actually get an official diagnosis and they will tell me it's some other nerve issue.

I know I am getting weaker on the left side where all this started. I continue to walk on a walker and just feel exhausted majority of the time.

Sorry for being so long winded...not sure I even said anything here.

I don't want to leave this world yet....and I certainly don't want to die a slow miserable death. My cousin just passed away in his sleep the other night from a heart attack...not sure that's not a better way to go...my biggest fear is not breathing...I have been asthmatic since I was a kid and always hated now being able to breathe....I get anxiety just thinking about it.

THANKS FOR LISTENING.

 

[notme]

Hon, I'm sorry to say that with two opinions, it may be unlikely to be something else. The EMG/NCV are pretty definitive if other things have been ruled out already via labs and MRIs. But, I can tell you that one neuro was sure I had ALS---and now, over a year later, we still don't know what i have, so try to keep thinking positive until you get a confirmed diagnosis.

That said--there ARe clinical trials and you're at the right place to find out about them. You're going to want to see a neuromuscular specialist for an actual confirmation. Not a general neuro or a general anything. See someone who specializes in ALS.

There are a lot of things that can be done for you if it is ALS...there are new drugs coming, there are new treatments for breathing issues when the diaphragm weakens.

In the meantime, all you can do is take care of yourself, don't get too tired...prevent falls, etc.

 

[ottawa girl]

Hello Bernie

You have been through a lot- hang tight (yeah easier said than done!) until you get final opinion. I hope you get better news, but please, just so you know: There is life after diagnosis. In some ways, it's a deeper, truer life with many blessings.

I understand your fears, and shared the same anxieties initially- but a short measure of time and the love of family & friends- do provide we humans with coping skills we never knew we have.

This forum was, and remains, a vital component is my own voyage of discovery. I have "met" amazingly generous people, garnered important information (knowledge is power) and have received more support here than I could ever have imagined (in my "old" life) ever even needing in my lifetime.

I wish you well and if you need us (or not) we will be here for you too.

 

[Grateful]

Hi Bernie

I just wrote a long response to you which disappeared into the cyber void; it's very late here so I will try again tomorrow...

 

[berniec74]

Thank you to those who replied. I am continuing to take one day at a time. I attended my cousins funeral yesterday. He was 55 (I am 49) and he died in his sleep of a heart attack. In my haste I thought "maybe that's the way to go"....but if I do get diagnosed I will do whatever it takes to live my life to the fullest...at least ALS does not take your mind away (that I know of!) A good night to all of you.

 

[Tokahfang]

There's no reason to wait for a diagnosis of anything to live your life to the fullest. That's a project worth starting at any time!

 

[Sun123]

For three weeks, I have had hoarse voice, weak tongue, trouble swallowing, and sore throat. Wife says some slurring. Swallowing test today showed clearly that food and liquid wasn't going down on the first try. Does anyone have any thoughts? No follow0up doctor test for another week.

This is so scary.

 

[ottawa girl]

Welcome to the forum Sun123.

Yes, swallowing issues are scary- but it can be a lot of different things considering you've only had symptoms for three weeks. Do not jump to conclusions right away, and wait for more tests. I can only imagine that the tenser you get, the more trouble you'll have swallowing- so try to relax, if you can. I'm sure your doc tors will figure it out.

Good luck!

For three weeks, I have had hoarse voice, weak tongue, trouble swallowing, and sore throat. Wife says some slurring. Swallowing test today showed clearly that food and liquid wasn't going down on the first try. Does anyone have any thoughts? No follow0up doctor test for another week.

This is so scary.

 

[Grateful]

Bernie

I know it is hugely scary; I don't have ALS but I do have severe bronchiectasis, and I will therefore die of respiratory failure and cor pulmonale, unless the bacteria colonising my lungs manage to polish me off before then or I get run over by a bus. My pedestrian skills are pretty poor

So we will probably arrive at the same point via different routes; I just want to assure you that there is a great deal that can be done to help, including various types of ventilation and medications. And people are working hard to improve the options available to us.

It's easier for me than for you; I have had a lot longer to get used to it. But it will become easier for you once you realise that there are ways to help, and that the wonderful people on this forum will be helping you!

Good luck, and I hope we don't reach our meeting point for many years to come!

 

[HelenL]

Bernie, all I can say is that as devastating the news is, there is a lot more life left to be lived for us all. Once you wrap your mind around it, get signed up with ALSA, MDA, the VA if you 're a veteran ... learn all you can, sign up for disability, clinical trials, etc. Get equipment lined il before you need it.

Above all, remember you 're the same person you were before the diagnosis... we call it LIVING with ALS.

 

[berniec74]

Thank you for all your continued replies. It is helping me! I went to St. Louis University neurology department today - technically my third opinion. Dr. Hayat was very clear in her confirmation of the diagnosis...which honestly, I was ok with...I know, I just want it confirmed and a plan of action in place. I'm lucky I am in St. Louis and have already been to Wash U. but after my visit today I am going to remain in the care of St. Louis University...they are on the same level for this as Wash U. in most every way. I have already received a call from our local ALS association and a woman is coming to meet me on Friday afternoon. They already have me scheduled for my first SLU clinic on 12/28. Their clinic is nice because you are there for a while but you see all the members of the team in one day...which the ALS rep said is what most like about it best and they focus solely on ALS where Wash U. is a multi-discipline MDA clinic. I can't explain it but I just knew instinctively that I want to be with their program. Dr. Hayat would like me to start Riulek...of course insurance denied it and they are appealing it - the nurse said this is typically and it should get approved. I had quite a headache when I got home today and I haven't read all the information on Riluek..anyone know the quick answer to what it is supposed to do or help with?