Status
Not open for further replies.

Paradox

Member
Joined
Oct 26, 2006
Messages
17
Reason
PALS
Country
US
State
Ca
City
Redondo Beach
Hi again. I am a 35 yo internist who suspected ALS based on my symptoms. I have not been diagnosed yet, but am very nervous, given my EMG results. The neurologist told me I could have early motor neuron disease. I have fasciculations and denervation in both legs as well as in my paraspinal muscles. My MRI was negative. I am now supposed to see a muscle specialist to rule out other things. I am trying to be hopeful, but it is hard because I know most of the steps in how the diagnosis is made. I don't know if I am just concerned about worst case scenario, or I can't logically think of another diagnosis. My wife is freaking out, and I can't blame her. So, here I am, writing in this forum, fearing what comes next.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Paradox -

You've come to the right place. This is scary stuff but as you can see you are not alone. Keep checking in and let us know your progress.

Liz
 

Paradox

Member
Joined
Oct 26, 2006
Messages
17
Reason
PALS
Country
US
State
Ca
City
Redondo Beach
Thank you. My heart goes out to those who have this disease.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto

Paradox

Member
Joined
Oct 26, 2006
Messages
17
Reason
PALS
Country
US
State
Ca
City
Redondo Beach
Thank you Al. I had already reviewed the differential diagonosis, which I why I am so nervous. I have access to several full text medical journals and medical textbooks online. My EMG findings and my clinical presentation don't really fit into anything else. I do appreciate the link, though.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hang in there Paradox.

Liz
 

TBear

Distinguished member
Joined
Nov 4, 2003
Messages
430
Country
CA
State
ON
City
Uxpatch
Hi Paradox:
Your being here is on line with us is unique, in that, in the 3 or 4 years that I've been involved with this forum and the ALS Canada one that preceded it, we've never had a MD who has been here. Understand that all the testing is headed down this path, but know that while we here aren't medical pro's that we will always be here for your support... you may need a sense of humour though.
Is paradox the same as pair of docs? is your wife a physician too?

Good luck
T.
 

Paradox

Member
Joined
Oct 26, 2006
Messages
17
Reason
PALS
Country
US
State
Ca
City
Redondo Beach
Thanks for the reply. Chuckle...good thought...no, my wife isn't a physician. She is an accountant, or, as I fondly call her, a number-puncher. I chose 'paradox' because I am, metaphorically speaking, a physician looking out from the other side of the bedrail. Currently, I fit in the category 'possible Als,' with my workup pending. I hope it is something that just burns itself out.
 

Kellycape

New member
Joined
Nov 17, 2006
Messages
8
Reason
PALS
Country
US
State
MA
City
Florence
Hey hope you are doing ok im feeling prettscared and just found this site too. emg monday but itr doesnt look too good have atrophy in both thenar eminences which was found by a fluke but ihave been dealing with full body fasiculations myokemia cramps for years just learned to live with it if you have any words of wisdom or tips personal or from medical knowledge please let me know iwould be deeeply grate ful thanks. can atrophy burn itself out?
 

Paradox

Member
Joined
Oct 26, 2006
Messages
17
Reason
PALS
Country
US
State
Ca
City
Redondo Beach
I wish I had answers, but I don't. This stuff is just out of my realm of knowledge, being internal medicine trained. I am just trying to learn what I can about current possibilities, but at the same time, I don't really want to read to much, unless I am diagnosed. I had read somewhere that there are a few rare cases, and I haven't really done a medical journal search because I would rather just be hopeful, of ALS stopping. I don't know if this is fact. Ah...I just found where I read it.

http://www.alsa.org/files/cms/Resources/Reasons_for_Living.pdf

It is mentioned under atypical cases. Of course, it appears to be a quote from a DM, FRCP, whatever that title is. I know I could do a case review search, but I'm not ready to be disappointed.

Ah...I think a DM, FRCP is the title of an british trained physician. Well, that's more encouraging.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Paradox -

I can't help but be hopeful because the alternative stinks. Nevertheless, my husband and I are going to start working on handicapped accessiblity modifications to our home (A RAISED RANCH, GOD **** IT ALL) next spring.

Did you see Al's photos of his bathroom and outdoor lift? My husband is not pleased to have the bar raised that high. I'm insisting on a ground level patio with attractive landscaping and plush outdoor furnishings. If I have to be disabled, I want to go in style!

Is your wife still freaking out?

We must all make the most we can of our situation.

Liz
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I think DM is Doctor of Medicine and FRCP is a Fellow of the Royal College of Physicians both British titles. AL.
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Al ..... I have worked for medial doctors for years and had to include those letters after their name when typing documents. Al, you're right with the meaning of those letters, good for you! Anne
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
But not sure if they are British Titles...Anne
 

Lindoglvr

Member
Joined
Nov 24, 2006
Messages
26
Reason
Learn about ALS
Country
US
State
VA
City
Newport News
Hi Paradox....I agree with you...as I"m not diagnosed either!

Hi Paradox,

I'm a speech-language patholgoist that has had neurological symptoms for the last 2 years. My previous workup of MRI of brain and spine, EEG, EPs and EMGs were negative for anything.

I'm a traveling SLP so mainly see one neurologist, but have seen 2 others. Last year my neuro thought I possibly had a vasculitis because of a elevated ANA and sent me to a rheumatologist. That neuro's findings on my exam was hyper-reflexia on the left side and he felt I had upper motor neuron involvment.

Since then, I have had an increase in LE and UE weakness, have tremors in my arms when I try to push myself out of bed, I have notice fasiculations in my tongue, but not all the time. I've also had incidents of hyper gag reflex to the point of not being able to brush my back molars w/o severe gagging to the extent that I then vomit and retch so severely I get petechiae. This quit, but everynow and then I still get it.

My recent exam was a MRI of the brain - normal results, MRA with hypoplasticiy of my posterior commuicating artery and my MRI of the spine is what troubles me.

Two years ago it was normal. Now I show "thinning of the spinal cord" which I guess is another way of saying "atrophy"? I also have some bulging disk in my lumbar spine, but my spine is normal? I haven't had any trauma to cause the bulging, so I'm unsure of how that came about.

Anyhow, now that I am having more spasticity in my back, more weakness in my UE and LE with the tremors in my arms combined with my MRI of my spine, I am starting to think I might have ALS.

I suppose my neuro will be doing EPs and EMG again and who knows what. I liked it better when I was thinking I had MS when everything else had been ruled out, including some awful things like Churg-Strauss and Wegener's granulomatosis, of course things like Lyme's, lupus, sarcoidosis, etc.

Now it's more of the waiting game. I'm trying not to self-diagnose, but it's hard, when I work with neurogenics and know my results and symptoms, not to...as I"m sure you know. I guess I'll wait and see.

Anyhow, my prayers are with you and all on this board.

God bless,

Linda
 
Status
Not open for further replies.
Top