How can they be sure?

[NeverPan]

Hello Everyone,

I am yet another new person to these forums, and as you can guess, I've been through them all looking for the answers that i want to hear..."what they think I have, I'm sure I don't". I am not unique, I don't believe it's possible to not know. I say this because, i'm still trying to find something that indicates that what I'm experiencing is not a form of MND. Here is the RD version.

I'm 47, and most of my life have been extreemly happy and healthy, until I turned 40. In June of 2005, I suffered a major heart attack...lucky me, no surgery, just a stent in the RCA and i'm back to work. In 2007 I herniated a disc in my cervical spine C4, Tons of pain and a great disc removel surgery and i'm on my way. In 2009, I herniated another disc C5-6 and this resulted in a fusion.

During this time, no one explained why this was happening, nor did I think to ask. I work at home in Software support, and nothing I was doing was causing this.

This leads me to this year, here we are February 2012, and I began to experience pain at the base of my skull, and profound weakness in my left hand? I go to my GP, scratches his head and sends me to neurosurgeon again. Surgeon says" you need an MRI of the complete spine, lets see what happening, and low and behold nothing to report. I'm good from that respect. He did an emg of the left arm thinkg CT, but no luck, no trapped nerves. Now I go back to GP because weakess is turning into slight stiffness in my fingers. He proceeds to do an MRI of the brain, and now he's happy to say its not MS. But the stiffness and weakness has him concerned, and he want me to see a neruologist. I'm game, not a problem, just want this fixed.. Right?... Neuro appoints comes in July. Meanwhile I have now begun to experience Muscle Facs. In left bicep and left thigh. Add insult to injury, in May, I began to sound like I have a cold (sinus) went to ENT...scratches his heads and said "not seeing anything" Voice now gravely, comes and goes daily. But oh....there's more, now the right hand has been getting stiff, but still usable I would't call this bad, but just different than it was. Finally, I go to neuro, he examines me, then reviews all MRI, runs a serious amount of BW, complete an EMG/NCV and scratches his head.

I said to the Neuro,
"What do you think it is" He replys, My best diag until the EMG would have been ALS. You have hallmark symptoms, but EMG not showing anything conclusive. .Huh? ALS? "What's that?" I scratch my head, because I thought this was my back (Neck).. Neuro feels confident that I should now go the the division of Neuromusclar medicine at OSU....Huh? Why?
How can they be sure of anything? This science thing is driving me crazy.

I consider all of you experts that have gone through this and received a diag. So, when can I again be comfortable in knowing that what they are thinking, is wrong? I'm fearful, but remain positive that this will go my way. Did many of you feel this way?

It's been 5 months and the one thing that lingers for me is what the neuro said when I said "I don't think I have what you think I have" He aked me why I thought that, to which I said" I can still use my hands, and walk and talk. His reply "not enough MN's have died and it may be slow progressing.

Is this possible? I have to get on with life, as all of you are doing, with no Diag. But, I can't stop reading other stories and they are so similar.

Still smiling and remaining positive. Meanwhile, OSU has now been sent the referral based on Weakness/Stiffness.

Would love to hear your thoughts, my apologies that this is so long.

 

[Ms. Pie]

I think you should see a new Neurologist. The one you saw should never have said anything about ALS. it's not. See a new Neurologist.

 

[NeverPan]

Thank you for reading my long story. I have now been referred to OSU's Ohio State University's division of Neuromusclar medicine. They are scheduling 4 months out.

Thank you for your honesty...much appreciated.

 

[johnnyliverpool1]

never pan...i know i shouldnt, but i enjoyed reading you post...because so much of what you say i could relate too....especially the naive bits..just as i was naive........thanks to being on here i know more..but the more you know the little you realise you know..one of the group of neuros i was under, with a big smile on his face, said good news johnny, you aint got..ms..tumour. had a stroke, plus some other things...so its my cervical myelopathy i says.....you can operate, yes....no johnny , thats not whats causing ur probs..its somewere else in the spine....where...johnny, you better see another neuro he says......so i did. turns out he is top man..the big cheese of neuros..they dont come bigger, round these ere parts, apparently....after repeating all known tests i got the verdict...but no smile this time...its something in the spine but we dont know what...after 6yrs thats the best they could do....now i have lost the thread of what i was gonna say.....sugar......any, me old son, hopes you get answeres and the best ones at that...johnny

 

[jamiem]

This all sounds too familiar. I walk, type etc no problems. But I have Pseudo Bulbar Palsy and have lost 40 pounds and my speech is raspy and slurred. I fear the day I will no longer be able to speak. Swallowing is difficult, I crush my pills and eat soft food that I can swallow. We are all in this together and I wouldn't wish this on anyone.

 

[NeverPan]

To those Jamie, Johnny and Ms. Pie,

Your thoughts are much regarded. I feel something but don't know exactly what. I have also neglected to mention other things....you know...the other things, like legs have started with morning stiffness and sore calfs. Trouble sleeping on my back and stop breathing momentairly, food is now getting stuck at the very top of my throat and I end up coughing it up....sorry to be so exact. The breathing issue, had me in a sleep study for apnea last week, but guess what? no Apnea. but have to visit with Pulm. to get diag....go figure.

Sorry, I was trying to think as I wrote (mistake #1) and I couldn't remember the things I've been trying to overlook since this started. I worry daily, and pray lots. I have told people what the Dr. has mentioned. and by-the-way...both GP, and Neuro are on the MND/ALS page, I'm the only one that's not at this point. Still hoping that something will pop and this will all go away.

Many thanks to those reading my neverending story.

 

[NeverPan]

I too new at this I just posted in response but it appears it went to neverland....many thanks and additional symptoms that I forgot to mention. (because i'm trying to forget).

Difficulty sleeping on back (stop breathing momentairly) Went for Sleep study and no apnea...not sure at this point, waiting to pulm.
Legs are getting stiff at the knees with lots of use
Food is getting stuck at top of throat, and choking fits. Embarrasing

Sorry for missing these items in my main post, but I was using my memory and it's not the greatest anymore (Aging)

Best wishes too all

 

[NeverPan]

Thank you Johnny,
This forum is a reminder that were not alone in whatever struggle we are dealing with. Many thank

 

[HelenL]

One thing to remember is that not all your symptoms are related to each other... although I do think that things can "trigger" ALS.

Also your symptoms seem to be all over the place... raspy voice, breathing, swallowing... vs. knees/ankles, etc. This usually doesn't present at the same time in different areas, and is not symmetrical. And typically an EMG will pick up issues in denervation lonnnnggg before you'll notice a problem there. So those things are actually in your favor.

Try to remain optimistic, and call the secretary at the clinic you're going to for a cancellation spot if it comes up.

 

[notme]

Seriously, I'd ask the neuro what "not conclusive" means regarding the EMG. I'd ask specifically what it did show and that what that means. He's already let the ALS bomb out into the room-so there's no reason for him not to answer that simple question.

There are a lot of neur opathies that can cause weird issues, but, not usually stiffness. Stiffness is usually joints-which ALS doesn't affect. Have you seen a Rheumy?

Can't hurt to contact Cleveland Clinic, either. See if there is a neuromuscular dept there.

 

[NeverPan]

I will answer notme and Helen.. again many thanks for the input. Symptoms have been very gradual not all at once, but nothing seems too severe...Does that make sense? Meaning, although this began with left hand weakness and difficulty grasping the only difference today is that my left bicep is now jumping randomly with no cause and the whole are is now weaker. Looks a bit thinner than the right but maybe it always did. the nasal voice began in May then shortly after began twitching in right jaw and down right side of neck, which brought slight soarness when chewing and a little trouble swallowing and began to notice shortness of breath. End of July, now I'm noticing stiffness upon waking in both legs and calf muscles are "tired" It's hard to describe not sure but noticible. The stiffness in right hand began early July but has not change much. I actually have been to the cleveland clinic, and rheumy, they did an RA factor and nothing..

I just got the call from OSU, not have appt with Dr. on 10/11. It appears he specializes in PLS and Myop.....Don't know if that's good or bad.
Someone once told me to keep a list but to be honest, i've not been focusing on what's occuring, but it appears daily reminders of something are lingering and it appears that whatever it is, it's not gonna let me forget without working at it.

I believe it's never as bad as you think it is. So that and your comments are reassuring. many thanks,