hello

[Mollysol]

No, unless your neuro does the actual EMG, you won't know much for a while... even if he does it, he would only give you partial results without looking at all the info (is data the correct term here? don't know)

And I'll have to remember that it's cadbury's that you like! Keep the faith, it is a rare disease.

LOL Helen .....cabbury's rocks

on the results :-given that i am now at week 8 waiting for lumbar puncture results i wont hold my breath ( no pun intended ) on the EMG results . They certainly know how to draw this out , 14 months later and this visit to my GP 2 weeks ago was the first time i felt someone was taking me seriously and that i was not going bonkers ................


i know its rare , the odds are definatly my side , so keeping my pecker up ( so to speak) as i am niether feathered bird or man :?: last time looked anyway :smile:


x Mary x

 

[tammyg]

You have a family here now. No worries! Your brain can play terrible head games. Idle hands are the devils work shop is what they say. Stay positive and busy. Don't worry until it is time to. Dr's are wrong alllll the time.

 

[Mollysol]

i am ok until they tell me otherwise no point fretting too much until i know for sure what i am dealing with , whichever way this goes i have a plan for either eventuality .

trying to stay busy , but signed off work at the moment , i am a nurse and feel i am risk to my patients as well as myself . taking a pragmatic approach :shock:,

after 14 months of changes in my abilities i noticed i become accostomed to the changes and make the necessary decisions/changes to my daily life as and when necessary . and no-one has noticed until very recently - result :razz:

i have found that rest is very important so if something is happening one day i make sure i do nothing the day before and allow myself recovery time the day after .

tis a tough old life x Mary x

 

[Mollysol]

My Lumbar puncture results have come back clear !

i have to admit i am fast falling into a pit of self pity have cried and cried today .


neuro number one is now also arranging and EMG and i have one scheduled with neuro number 2 on 25th OCT


guess looking at my UMN symptoms and possible LMN symptoms things are looking grim ?


damn damn damn i was sorta ( as mad as this sounds) hoping my Lumbar Puncture would have confirmed MS !

worried x Mary x

 

[HelenL]

Molly, I think we all want to find something ANYTHING that points to anything that's treatable... myself, I kept insisting that it was probably Lyme disease, which was the reason for my spinal... mine was clear as well. And there's always a niggling doubt in the back of my mind, even though I've been diagnosed nearly 1 1/2 years now.

You know, the most important thing to do for yourself is to continue to just "do"... make your plans as necessary depending on the progression, but we are all LIVING with ALS... It's a matter of how you look at life – "life is fatal" We all have our moments of despair, and we get through them. Personally, I'm on the at least 10 year plan... and with the good news coming out of the Emory stem cell trial, the Dex trial that I'm in, and the NP009 trial, all are showing such hope that a treatment will be found.

If you want to get cheered up, come and visit us at our Come for Tea thread that Aly started... which is a lifeline for me to get through my days. It's the first thread and the last one I check everyday. After a while you get tired of the technical crap, and this one is just for fun.

Praying that you get some good answers soon, and that we can boot you out of our little club (not that we would actually, just saying!), the one no one want to be in.

Helen

 

[Mollysol]

Acceepting that proverbial kick up the butt , with pleasure ..........just saying ! ( i must stop saying that ;-) )


The half bottle of wine along with your words have helped ......it wasn't MS but that does not mean its MND, right !


i have pulled myself out of the doldrums and wine bottle is half full

thank you sweetie , you made sense of a momentry lapse of concentration ( i love Pink Floyd )


well check into the afternoon tea time thingy but i do prefer coffee .....mostly

xMaryx

 

[notme]

Try to keep the forum motto (*well, it should be the motto)

It can only be ALS when it CAN NOT BE ANYTHING ELSE.

The sensory issues are a positive sign for you, I hope. Lots of things could be the problem. Keep us posted.

 

[Mollysol]

Thakyou NM

Had an absolutely fabulous day today , 3 hours at the sea life centre , then walked the beach with the dogs and had fish and chips .......all-be-it i am slow- but i did it.... peep peep ! changing my name to 'it can't be'

x Mary x :razz:

 

[Jannie_M]

Hi there,

I have also been dealing with declining health for about two years, now and was forced to leave my job a year ago.

The second neurologist I saw ruled out Myasthenia Gravis and Mitochondrial Myopathy and then didn't want to continue seeing me because he could not find a reason for my ptosis. (Which is now loss of muscle in the upper half of my face, not just one eyelid)

I am on my 3rd neurologist, despite all arrows pointing toward an ALS diagnosis, I am still holding on to the hope that this doctor will find that something else is causing my symptoms.

You are not alone

 

[lovelily]

Hello Mollysol!

I haven't been on this site in a long while, but I wanted to see how some of my friends were getting on, and your post caught my eye.....

Doctors, for a long while, thought I had MS. I did not. After 3 muscle, and one nerve biopsy, I wound up having some stupidly rare neuro muscular disease called " myofibrillar myopathy. " Go figure!

But along the road of " do I have MS, journey " one of the things I do remember about it was, something called, Transverse Myelitis. Inflammation of the spinal cord can cause many problems, if I am not mistaken.

You need more than one spot, or legion on the brain, for them to declare MS....but a legion on the spinal cord is something different.

I wish you all the best on your diagnostic journey, and I pray God it is something manageable!

take care

oh, and by the way....I too thought I had ALS. My grandfather passed from this disease when I was a young child.

 

[Mollysol]

NCv and EMG done this morning , the nice consultant carrying out the tests said all is fine and he could see nothing abnormal , having a nice strong coffee now and grinning ear to ear
x Mary x

 

[Alyoop]

Congratulations, it's so good to hear positive news and someone who believes it!

 

[AndyDJX]

NCv and EMG done this morning , the nice consultant carrying out the tests said all is fine and he could see nothing abnormal , having a nice strong coffee now and grinning ear to ear
x Mary x

Congratulations
Excellent news.

 

[Mollysol]

thank you Al

I have been reading these posts for some months now , and i am annoyed no angered by the the incesant whinning of some people with a cramp , fasiculation or a twitch who relentasly repost new symptom after symptom despite being told by real professionals there is nothing seriously wrong with them . I have UMN issues and i can now deal with them and i am truely truely thankful that my fears were allayed , i have you see in the last 6 months months nursed two people with ALS through the end stage of this bloody awful disease ,and i wass truelly very very terrified , these relentless posters who sadly to me appear to want to have a illness that is the most horrible thing ever need a hob nailed boot up thier shameful backsides and stop pestering you good people . The EMG was a horrrible experience and it beggers my belief that there are people who come on here requesting ( yes requesting) a second or a third round of torture !

My goodness you people get a grip on your lives and live them .....you know who all are !

Rant over x Mary x

 

[Alyoop]

Mary, when I got told no ALS. I drank the nicest red wine I had ever had and got totally..............I am sure you can work it out. My Hubby and I had to spend some time sobering up so we could get back to our hotel. Boy was it fun. The doubts occasionally raised their nasty little heads, but I stomped on them.....squash.

Love Aly