Status
Not open for further replies.

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Rose, I know you just got done shutting down your thread about your EMG, but I think I need to state a few things that relate to it. It's not only for your benefit . . . but also . . . for the benefit of others on here.

I copied what I wrote when I got the message your thread was closed, so I have simply pasted it here. It reads as follows:


Jeff's reply is a good one and brings home a good point, which causes me to qualify what I stated in my reply to you.

In my post, I was referring to the progression of ALS and how it starts focally and then spreads, eventually becoming global. Then . . . and only then . . . can you be diagnosed with ALS. This is dictated by the El Escorial criteria. If you do not meet those criteria, then you cannot be diagnosed with definite ALS.

There are also different categories defined by El Escorial: suspected ALS, possible ALS, probable ALS and definite ALS. You can only be diagnosed with ALS if you lie under the "definite" designation.

If all that has been found thus far, are pathological symptoms in your bulbar region, then you do not have a diagnosis of definite ALS. It needs to spread to other regions of your body. If it doesn't, then you will be diagnosed with bulbar palsy . . . and if your symptoms never spread beyond your bulbar region . . . then that diagnosis cannot change.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Thanks Wright,

Yes, after my first exam with the neuro at Hopkins I was told that I did have bulbar palsy, not so much she said as a diagnosis as she said she was not ready to give me one, but rather as a definition as to what was wrong with me. (and the neuro that so upset me yesterday in NYC did agree with that).... My second visit at Hopkins she did give me a diagnosis of "probable" MND, and said then that I did not meet the criteria of the El Escorial.

When my legs started to get weak after that last visit, I was so surprised (I remember I PM'd you about it) because I'd assumed because of my problems being in the bulbar region, that it would be my arms next if another part of my body was going to be affected. (And you explained about it not being a "radiating" process)

I think its a good thing that you did post this. I just didn't want my original thread to drag on and on as my questions really did get answered.

Its also should be emphasized for those that are among the "scared and not diagnosed" when they read about my latest EMG on limbs, that they know that I've not had sensory issues, I do have "pathological" (that sounds so ominous!) changes in the bulbar region, and had those changes confirmed for almost a year, with symptoms for almost two years. Also, that my leg weakness did precede my fascis, the onset of weakness was gradual, and that other than a dent on top of my foot where it meets the leg (and I didn't ask the guy about yesterday) I have not noticed atrophy or possible atrophy. I've also not looked for any. The dent could have been there, I honestly don't know. My other leg doesn't have it, but I was in an accident many years ago, and the other leg has had a couple of surgeries and does not "match" rightie exactly anyway. :)

I've made it a point for a few months now NOT to study my tongue LOL, and have been quite faithful in that. (Its floss, and brush, check the teeth and don't look inside the mouth for me!) I've never been tempted to measure any of my limbs for comparison sake, and don't try to test how strong I am or am not.

My next step in my coping plan, instigated this morning, is to not have anymore diagnostic tests done until it is insisted upon by my neuro.

Now, I'm taking my little Mini Cooper convertible up to the dealer for its oil change, and plan to do the drive with the top down, and not even put a scarf on the hair! :cool: ... I'm moving on folks! :)
 

lovelily

Distinguished member
Joined
Nov 27, 2007
Messages
390
Country
US
State
NJ
City
Northern
Hi Rose! You go girl! I 'love' mini coopers! :-D Have fun......

ps...I never measure anything either! smart cookie.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
i agree a 100% with wright about the diognosis criteria for als.
for a definate diagnosed there should be umn+lmn signs present in the bulbar + 2 or more areas of the body at different spinal levels,anything else is possible or probable.
rose, i think you have dealt with your illness and fears really well,your inteligence and dignity always shows in your posts.
take care.
caroline:)
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Hey Rose, i wanted to reccomend a really great song to listen to while you are driving, it is called "I'm Yours," by Justin Mraz... Its really laid back and tells exactly how i feel (most of the time!) There is this one line i love,,,, I am done checking my tongue in the mirror and bending over backwards just to try to see clearer, my breathe fogged up the glass so drew a smiley face and i laughed.......: ) Best Wishes, and keep in touch Sammantha
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
You guys are the best, even after I closed the original thread, you're there for me.

I did want to clarify my little summary (#2 in this thread), because I expect that someone out there ~ most likely many someones! ~ are analyzing it to death, even though they may never post.

About my weakness, I did not realize my arms were weak until I needed to perform a task that has not ever given me trouble at work. (The timing of this was about 20 months after bulbar symptoms first were noticed.) This was during annual qualification continuation training for the FAA. I also noticed other subtle things. When I began to have weakness with my legs after that, this was when I was more puzzled because it had been my understanding that if in fact I had MND, that my arms would be much more affected by it, before it moving to my legs. I questioned first Wright on here, and then my neurologist, and was told that MND is unpredictable etc. My neurologist also told me that UMN will cause weakness and she felt that was what I primarily had at this point.

It was my legs that began to have the fascis (at least ones that I noticed) before my arms or hands did. If fact my arms either continue to have way less, or I'm just not feeling them. The extreme ones like in my YouTube video over on the EMG thread don't happen as frequently as the milder, slower ones. There is always a little movement going on in my feet, this never completely stops, but is slow stuff, and different areas of my legs have ongoing infrequent ones, its like a twitch in my calf, then one at the ankle, etc. They are not very noticeable to me, I'm mostly unaware or able to ignore this type.

In the summary, I also said I didn't have sensory issues. This was meaning that I have not had any tingling or heat/cold or numbness. My NCV both times was normal (It was not performed in the larygeal area, only EMG there)

Now, just need to add to Sammantha that I actually downloaded the song she suggested by Jason Mraz from iTunes, it is cute :)

Al, it would make sense that this thread be moved to the "Do I Have ALS forum", however Wright posted it in response to my other thread that is on this forum.....

And, about my little Mini Cooper. Yes, it is the coolest little car :cool: it handles great, its zippy and is roomy inside (front seat area LOL) British Racing Green with white racing stripes. We can fit all of our suitcases in there for work (not that I work anymore, but they do fit) and with the backseat laid down, his golf clubs go in with no problems 8) After having a series of Jeep Grand Cherokees it still feels like a toy car sometimes ~ maybe a go kart.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey there rose-
Your mini cooper sounds cool.
I thought I'd better tell you what I drive- I have a silver Scion XB. Yes, it gets a lot of attention just like your cooper does I'm sure.
I have a sticker on the back windshield that reads "I love my toaster"

I'm just waiting for the day they cut slots out of the roof for sunroofs and I can put some giant poptarts thru the roof!:lol::lol::lol::lol:
hugs to you!
brenda
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Brenda and your Scion XB

8)

We Cooper drivers almost always wave to another Cooper motoring along. If the other person doesn't wave, its like, what's wrong with them LOL ~ I'll bet its the same deal when you see another Scion on the road ... maybe you could get the Toaster Slot accessory/modification kit, available soon :-D
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
Hi Rose,

I am sorry that I missed your thread, I was not really on this week. I just feel for you (on that day, I am sure you are doing better). YOu have been there for me on soo many occaisions and I feel bad that I did not see/read that. I know how frustrating it can be. My neuro wont answer any of my questions, as I am sure you have read in my posts. I think it is bullsh**, it is our body and we deserve answers and explanantions.
I guess the one thing that I get out of it is that, it must be slow moving and not detectable in your limbs. I would think that is good. It does go to the point that I have tried to make to my docter that you can have a clean emg and still progress to mnd. I was suppose to have an emg on nov 1st and have decided against it. I think that I will wait untill after the holidays. Anytime I have an appt, it seems to upset me. It is a strange thing....you dont want to hear a diagnosed but at the same time you want them to acknowledge that your body is on the fritz!

You are such a wonderfully strong lady! I really do admire you. I just sympathize with you. Sometimes there is not alot that we can say to each other, just that we 'get it' and care.

I feel the same as you, In regards to coping~no more tests or docters for me either. I will do what I am suppose to do and that is it. Emg every 6 months for 2 yrs. I did not go back to ENT or the Pulmonologist, I am done.

Have fun in your car. I always wanted a convertable but I am such a girl that I dont want to mess up my hair do! I have thin hair, it is not good when it is wind blown! IN the lates 80's & early 90's a car with top down was certain death to our 'wall of hair'. I used soo much hairspray and teased it out, I still cant believe my mother let me out of the house looking like that!

bless you!

april
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
April

Thanks April, That's why this forum is so great, we all definitely can relate!

In retrospect I think I did come away with information that I find helpful to myself in dealing with this.

With a diagnosis of "probable MND" I had started to wonder if I could have limb onset rather than bulbar onset. My reasoning being that I'd had severe leg cramps earlier before anything else presented itself, and that my bulbar area (just subjectively from my own standpoint) is not moving as fast as it was. But then, if its already going on before we feel symptoms, how would I really know when the bulbar part started, and judge how fast it is progressing. By what Jeff and Sammantha talked about with EMG interpretations, it is not likely that I do have limb onset if it truly is MND. I do have the bulbar palsy, no doctor is questioning that. Maybe this doctor thought an unknown, undetectable cause rather than MND is something he needed raise the possibility of.

Now that I've had time to let it sink in, I see that if it had been limb onset, even if I didn't feel the symptoms, all of my limbs should have shown the problem (it would have been the "global" findings that this NYC neuro was looking for). Too much time has passed for it not to be present if this were the case.

I'd imagine if he would have tested my other foot, (or leg) that more problems would have shown up, but I understand now why he didn't feel he had to. I think he should have, but it wouldn't have met the criteria of the El Escorial, which is what he was looking for. As far as my experience goes, it would not have taken that much of his valuable time to have explained that to me.

I'm over it, I've moved on, and I have learned from it. In a way I got the information I was really looking for, which is, could I have limb onset of MND rather than bulbar onset of MND. I know now that this is unlikely.

Re: the convertible, an nice silk scarf and you could definitely pull off the Grace Kelly look! (a thin silk one truly does the trick) Got to have the sunglasses too though:cool:.

take care, :)
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi rose

i totally understand your reasoning,it is hard to pin point the exact first symptoms.
i origionally thought mine was with the onset of pain and muscle spasms in my legs,then the progressive weakness.
but it was not till sometime later talking to my neuro i realised things were not quite right long before i thought.
people noticed at work that i was dropping things alot and generally clumsy,enough for people to comment on as not being right.
this was many months before i" felt" there was anything wrong.
i dont know if it was weakness in my right hand,hyperreflexia,clonus or inco-ordination that was there at the time but i did not know it.
weakness and fatigue have been a major problem since the start,along with the umn symptoms .
i am sure most people look back from when they "know" they are ill and realise there were signs there,some things you just dismiss as having a clumsy day or your speech is a bit off or your just a bit over tired.
ignorance is bliss.
take good care
caroline:-D
ps------i hope you are enjoying your saturday also.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
For Oily

Caroline, you're exactly right. For many, the symptoms are too insidious in the beginning, so our observations are very much subjective to what we know about ourselves, and what we perceive as to how we feel; whereas our doctors are more objective, in that they know about the way diseases present themselves.

As much as I protest and say my bulbar area isn't progressing that much, I may feel like that because the new leg stuff has grabbed my attention. My doctors seem to think the "wet voice" development is a big deal, as another step in the progress, but, I'm so used to my voice being weak at this point, that it didn't even occur to me to call my doctor about it when I noticed it was happening. :-?

Think how BethU is now starting to connect the dots (and having to do it for herself) as to how her various neurological problems are intertwined, and realizing that some of the process was in motion for much longer than she'd thought, and that her latest and greatest (ALS) was a possible progression from what already was there.

Just as you say ignorance is bliss, that needs to be total ignorance, because, also as true as that, a little knowledge is a dangerous (often time scary) thing .

take care :)
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Hey i would like to add that if you look at the video or pictures of Lou Gherig, you would never know he had ALS..... His speech was fine and he was okay to play one last game before retiring due to his diagnosis/illness..... So many doctors say that ALS affects everyone different and at different rates yet neurologist want to wait until every possible area of the body is affected and there is no other condition that can explain it. It makes me mad and very greatful all at the same time.
 
Status
Not open for further replies.
Top