My "Final" Neuro Update: I hope!

suzannj · 03-22-2009, 09:49 AM

Hi Everyone,
I haven't posted about anything going on with me in a while, but there's been a lot of progress since I've mentioned anything so I thought I'd give the latest, and as I said hopefully "final" update on my issues.

Super quick update for newbees: Started with a twitch (fasciculation) in my upper back in approx. May 2008. Within a short time they exploded EVERYWHERE. Cramps in my legs, perceived atrophy in my r.leg, limping due to the pain/cramping and non-stop fascis. Pain/cramping in the palms of my hands and soles of my feet. Moving months ahead - fatigue in my face, "tired" tongue, a choking feeling in my throat, extreme fatigue in my neck & feeling like I needed to rest my head to get relief.

GP and then Two separate Neuro's guesses along they way: "Could this be ALS in the very beginning of the disease? Yes - it could be, but I doubt it we'll have to see"; Lyme; Multi focal motor neuropathy; Nerves trapped in my lower back; and lastly - a mild case of Myasthenia Gravis . . . all ruled out one by one along the way. I must point out that my very first neuro, (who is an ALS expert of sorts) said after my exam and EMG/NCS that he was "100% sure (I) did not have ALS" . . . .but I did not believe him.

I have had: Multiple neuro exams; A TON of bloodwork; Two "regular" EMG's with Nerve Conduction Studies that only showed a mild neuropathy of my left leg (the one that wasn't even bothering me!); MRI of lower back; an SEPG test (I may have gotten that acronym wrong); MRI of my brain; and just yesterday I went to a university affiliated teaching hospital (i.e. not a "local" neuro) and had a single fiber EMG of my face and neck.

In the meantime per recommendation of my GP and my 2nd neuro, I started seeing a counselor and (to my great suprise because I never thought I would be on such a med) started on a low dose of Lexapro. I was/am open to anything that would make me feel better, and I'm very glad I accepted his advice.

Results of all this??? NOTHING IS HORRIBLY WRONG WITH ME. Yes, I am shocked. The final opinion of my neuro is that this all could have started because of some random virus and/or a combination of that along with an extremely traumatic event that occurred about a month before all of this began, and this is essentially Benign Fasciculation Syndrome. It's been 10 loooooong months now since this all started and she said that alone is a major indication that whatever is going on is not ALS or anything else ominous.

[CENTER]And for the FIRST TIME . . . I actually believe her.[/CENTER]

Even last night when I was trying to sleep, my back and leg muscles were jumping so hard and so frequently I had trouble sleeping, not to mention the mild cramping in the sole of my left foot. So, like many others, I do feel guilty even posting this, and thinking so much: 'Why do I get a pass when so many others don't?' I wasn't even going to post this, but I did only because I hope it helps someone else.

In the end, I am definitely not leaving this site altogether. Because of all of this, I am going to continue volunteering with the ALS Guardian Angels, hopefully my winter 2010 fund raiser will be a success, and I swear on my life, if I ever win the lottery I will donate (almost!) all of it to ALS research

Thanks everybody,
Suzann

rose · 03-22-2009, 10:34 AM

Suzann,

Thanks for posting this..... I'm so relieved. Its what we need more of, are reports like these.

Please do stay around. I sometimes think there needs to be a support forum for those that fear ALS, but the concept might backfire!

That's great that you're involved with the Guardian Angels now, I am very impressed by the sincerity of purpose with Stu's charity.

awieleba · 03-22-2009, 09:24 PM

Ditto Everything!!!!!!!!!!!!!!

Glad to hear and I can relate to EVERYTHING you say!

Zaphoon · 03-22-2009, 10:01 PM

Suzann,

Thanks for sharing your great news! You just have to love those EMG's that show things normal!

Zaphoon!

lydia · 03-22-2009, 10:08 PM

Suzanne,

You know I follow your story closely, and of course, am ecstatic that you have been cleared by your (latest) neuro and even more, that you believe her. I hope you can rest easy now. I know it is not easy when your body is not back to normal. Please keep in touch,

Lydia

Landau · 03-22-2009, 10:19 PM

Weakness? Atrophy?

Weakness one one side, (real, not perceived) Atrophy on the same side?

AND NO ALS?

well, that, Ma'am, makes me feel like uh LIVIN'!

I have been told by 2 Neuro's that I most likely have M.N.D. - now finally nerve conduction - even then, who knows. it's all such a crazy game, baby.

Was told a-many-a-many times on this forum that I do not a have motor neuron disease, yet experienced profressionals are telling me I DO, so that just goes to show, kiddies: take information and listen to these wonderful peeps (tall tales of silver and gold) ...but seriously, LEAVE IT UP TO THE PRO'S!
Still, I've been told by da Pro's I even might even not even have even THE ALS even. . . could have some other form of M.N.D., right?! So, it's all good in the hood! Still Young and never givin up, up, up.

anyhow. . . Veddy, veddy glad for you! good to see positivenessessess on this here forum (not that there's already not plenty of it, cause there is - just read da logues - great bunch of folk on this baby)

been lurkin' for a long lark, just thought I'd share my innerds (thought matter, thought matters).

anyhow, gotta love life regardless. live it 'til the fullest. shrink has taught me so - go on anti-depresstants for any anxiety til diagnoses (and after, it's your choice, baby baby)!

well. 'tis it. love all.

rose · 03-23-2009, 09:02 AM

Landau,

Your reply to Suzann was disturbing enough to me to where I back and read your previous posts. In them, your doctors had assured you you did not have ALS, you had normal reflexes, etc etc, and you also said your neuro appointment was not until mid April....

Yet yet just now, when Suzann comes on here with such a positive message, you reply with such wildly worded rhetoric, about how you'd been told by 2 neuros you most likely have a MND...(... but then something about waiting for a nerve conduction, which would normally be done at the same time as your EMG...

). Have your problems changed that much from when you described them to us here on the forum? How much of your body did the EMG find problems with? Was it global or restricted to certain areas? Was a muscle biopsy done? Did you have an MRI?

Why was your nerve conduction not performed at the same time as your EMG? Or are they deciding to repeat just this? ~ The two neurologists you were apparently able to get in to see before your scheduled one coming up next month (wow, you caught a break with the scheduling! waiting is hard) ~ Were they neuromuscular specialists?

When you read the sticky at the top of this forum page that lists what is required for an ALS diagnosis, how much of this criteria were you found to meet? In other words, these two neuros that have seen you the last couple of months, were they thorough? Did they abide by accepted guidelines in diagnosing you?

It is a concern, because many of your symptoms you originally described were not ones that are associated with a motor neuron disease, the problems with dizziness and bone cracking, for example.... it seems you to have so many symptoms that point away from MND, including your age. I feel the two neuros you saw that said they thought you had some form of it were very hasty in their comments to you. Even for you to have had the necessary testing to rule out diseases that mimic would be hard to accomplish in such a short time span.

I want to urge you to seek some counseling. Your reply to Suzann had many markings of a person who was writing during an altered state of mind.

Good luck to you. I hope, at age 23, you have a treatable condition, and you are willing to follow the treatment for it.

planningguy · 03-23-2009, 11:29 AM

Suzann,

That's awesome! I am happy for you. In fact, it gave me enough warm fuzzies not to feel so bad having to visit a job site in the middle of a blizzard (12-14 inches or so by tonight).

All the best to you as you move forward,

Robert

Al · 03-23-2009, 02:56 PM

Hey Rose, glad I wasn't the only one thinking that.

AL.

suzannj · 03-24-2009, 09:13 AM

Hi Everybody,
Thanks so much for your happy messages! If anything good has come of this whole mess, I have to say part of it was "meeting" all of you.

And of course learning so much about ALS, and that being the catalyst to cause me to get involved and hopefully do something, anything, to make some kind of a helpful difference. I'll never be able to let this go . . . plus I still feel like sh!+ so that helps! LOL

Robert: 12-14"?!?!? WTF? I really don't know anything about Wyoming (there's cowboys roaming around everywhere there right?) but I somehow didn't think it snowed there, especially that much! Whew! I'm going to PM you about being on a job board too . . . .

"Rose": Thank you very much, and is that a REAL puppy in that picture???

Zaphoon: Thank you too

You'll be happy to know I now think of you (almost!) everyday. Why you may query? Because my son's current favorite morning show is called Super Why and main character's name is Wyatt! It's too cute, you should try and catch it sometime LOL It's on PBS Kids.

Landau: I hope you feel better soon.

Lydia & April: Thanks so much and like I said I still plan on checking in here and there so you haven't gotten rid of me altogether

Al: (ditto

)

Have a peaceful day everybody,
Thanks -
Suzann

planningguy · 03-24-2009, 10:29 AM

Suzann,

I sent you a response to your PM. Sorry my post was a little confusing. I meant to say I was inspecting a construction project in the middle of a blizzard. Someone really wanted me to release a lien, but it required me to inspect the property and make sure certain improvements had been made. I keep forgetting that "site" has a couple of extra meanings these days.

Thankfully the snow let up around 9PM (It was supposed to keep going until after midnight), so we didn't get quite the accumulation they were predicting.

Take care,

Robert

crystalkk · 03-24-2009, 12:38 PM

Suzann,

I'm so happy for you!!!!

Landau · 03-26-2009, 03:37 PM

Quote:

Originally Posted by rose

Landau,
It is a concern, because many of your symptoms you originally described were not ones that are associated with a motor neuron disease, the problems with dizziness and bone cracking, for example.... it seems you to have so many symptoms that point away from MND, including your age. .
.

Rose,

Dizziness: this was something I experienced a while back, that had nothing to do with my current problems. The point of mentioning dizziness was because that led me to brain scans/imaging, which came back fine.

Bone Cracking: As the muscle wastes, the bone is more prone to crack. In all the areas where the doc's noted (and I feel + see) muscle loss, I'm cracking.

23: Yeah, it's young. But it happens all over the world.

I do not know for sure whether or not I have ALS. Right now it's not looking good, though.

suzannj,

thanks. I hope I feel better soon too. Glad everything worked out for you.

planningguy · 03-26-2009, 04:25 PM

Landau,

Hmm... I guess my question is the same as one of Rose's, are these two neuro you've seen neuromuscular specialists. Unless you've held quite a bit back, there seems to be a lot of bridges to cross before a dx of MND. There are a lot of neuromuscular diseases and other conditions which cause weakness and atrophy. Many of them are treatable. Don't give up the fight yet.

Best wishes,

Robert

Landau · 03-26-2009, 04:38 PM

Well sorry, let me clarify: The first Neuro said he didn't think I had MND - though he noted that ALS creeps up, so I might feel something that he can't exactly see yet w/o EMG. A case of coming too early, perhaps. He did note, however, that I had brisk reflexes (he said that he even has brisk reflexes), and that my one leg did look a bit smaller. So basically not ruling out MND altogether, but suggesting it's more than likely not the case.

2nd Neuro said she thinks I might have MND, based on muscle loss + brisk reflexes. Stated I have age going for me, but that it definitely does occur sporadically in the young. She couldn't tell me whether or not younger people have a slower progression, as she's personally never seen anyone under the age of 45 with the disease.

So now I'm going for tests.

So no doctor has explicitly said I have ALS. But 1 didn't completely cross out the possibility, and the 2nd suspects it could be.

And no, they were just regular Neuro's.

I find it very frustrating that 1 Neuro has 1 opinion (a relatively positive one, at that) only to have another 1 state the contrary. I'd like to get on with my life, but that doesn't look like an option right now.