Aussie alone

[Guest]

Hi all - I am so impressed with everyone's genuine concern and interest in all who visit this site. I have been avidly reading everyone's histories for some time now, but hiding in the background thinking about replying, then putting it off. Loved the thread about bra snapping, gave me a laugh when I needed one. There are so many of you, Lydia - you more so lately, that are going through what I am - the undiagnosed, am I loosing my mind, "I feel broken" stage.

Couldn't find my original thread introducing myself, but thought I'd write again as I am pretty much alone down here. Have talked to another GP re symptoms and he tried to get me into the only clinic in Melbourne that specialises with Motor Neurone Disorders, but you can't go there until you have a diagnosis. Yet I have to put up with Alphabet man (his name is so long you can't pronounce it) while he incompetantly goes about finding out what is wrong with me. At my first nerve conduction the sticky things kept coming off so he had to use sticky tape and his EMG only lasted about 15 minutes which he did while I was sitting up on the edge of a bed and then expects me to relax! - I think I will just have to spend more money and go to another neuro even though I am due to go back in October for another EMG, NC.

My symptoms are still advancing, ie fasics arms, legs, (now in my face/scalp/throat), muscle soreness (every few days it is a different muscle that obviously had a workout overnight), weakness (no atrophy), hyper-reactive to sound/touch, fatigue, cramps and I even had a massive cry the other day which is just not me.

I live in a smallish community, so I can't talk to anyone here as my children don't know anything yet and I don't want them to find out third hand and therefore scare them unnecessarily, but I have explained things to my hubby, yet I still don't think he understands the seriousness of what is happening to me. His words were "I hope you don't having anything like that (MND) cause that would be hell". My best friend is one of the local "broadcasters" so I can't talk to her, yet I think she suspects something.

Its just nice to know that there are people out there like me, even though I can't speak to you face-to-face, but you are all in my thoughts.

 

[Guest]

Hello

Hello Suzan, I am sorry to hear you are going through this as well. Isn't it addicting to read the histories? I am still doing that!

I also had a strangely short EMG, my doctor wouldn't even look me in the face. And he kept his back to me the whole time. I also have a couple of "broadcaster" friends. I am up for reappointment at work so I can't say anything to them without worrying about it getting around.

I notice you describe yourself as hyper-reactive to sound...I wonder...I have actually yelped when people knock on my office door, come up behind me at copier, or have the phone ring when I am lost in thought. So embarrassing. It happens ALOT and people notice; some colleagues joke about who is in the "made her scream" club. :mrgreen:

Good luck with your Alphabet man; what were the results of that EMG and why are you having another in October?

Lydia

 

[Guest]

Aussie Alone

Hi Lydia, sorry have had a busy weekend with sports finals over here racing between netball (aussie ball game primarily for girls which is like basketball, but not) and aussie rules football.

When I went to the neuro in July he handballed me to the other neuro who did the original EMG because he has "an interest in this sort of thing?!" - whatever that means. I was aware at my first EMG that he recorded one of my calf fasics very clearly. The neuro also vaguely mentioned "motor neurone" not in the context of any sentence (at least not one I could understand). Then asked if I had any questions - questions to what! He gave me no clue as to where he thinks this is heading, which after the fact can be very frustrating as I did not know what to ask about - he is supposed to be the expert, not me.

So, after reading what others have to say, I have started a list of questions to throw at him and if he is not more thorough or does not provide some insight as to where he is heading with a diagnosis, I think I will go elsewhere. I will be patient and wait until October unless things take a dive before then.

I must admit that new areas of cramping, fasics etc seem to come about every month to six weeks, when I first saw them (June 30) it was primarily in my calves/forearms, I now get them feet, stomach, back, face, scalp, shoulder, hands - basically all over. So by October who knows what will have progressed.

Thanks for taking the time to talk to me Lydia - on this site at least people know what I'm talking about.

Suzan:

 

[Guest]

We do understand, Suzann. You hit the nail on the head when you said you didn't want to scare friends and family until you know for sure. That's why we're here! :-D

 

[Guest]

Yep, thats true Cindy, we keep it to ourselves and then hopefully we DON'T have to say something like "Oh I've known since 2006, but didn't have a diagnosis" and then they would say "but why didn't you say something". Derrrrr.

Suzan

 

[Guest]

telling others

I also was/am practicing the don't tell until you know for sure bit but did tell two people recently (described result on ibuprofen thread)...a mistake I have decided and from now on will keep it to myself and here until it is resolved.

Lydia

 

[Guest]

There is probably no "right" way to do this anyway. I told everybody at work since I needed to ask for accomodations. Our "grape vine" is pretty amazing so I decided I would control the flow of information as best I could by being honest and open. I think they now wish I would shut up, lol! :-D

The down side to this is that once I told a lot of folks, I decided it was only fair to tell my family. I wish I did not frighten them until I have an actual DX but who knew it would take this long?

There is no perfect solution. We just do the best we can!

 

[Guest]

what do you do when you dont have diagnosed and have told family and now they think you have fibro or something because a doc can pin point?

We were at a fair with kids, walked there and then walked and stood around then walked back. My feet and legs were hurting amd my leg was tight so I didnt want to go back for the 2nd trip there. my family is like 'whats the matter with you?' they know everything but since the biopsy think it is nothing and said 'oh thats right, you have something that even als specialist cant find'! I know they (mom,dad,sisters etc) love me, but this is infuriating! They know how active i was, and this is not like me. It really made me angry and sad.

I dont say anything to my friends or nieghbors except that I have an autoimmune something going on. They suspect as they ask me to play tennis and I use to play like all the time.

take care,

april