Exams, updates & questions

[Anja]

Hi there,

Finally I have a first appointment for the "serious exams" at the university hospital (see my thread at new members: https://www.alsforums.com/forum/welcome-new-members-say-hello/18551-hi-netherlands-holland.html )

I have an appointment at april 20, so have to wait many weeks, but at least i have a date... On May 21 i get an EMG (had many of them but this will be a "big one" lasting 2 hours). I hate it that it takes so long, all the other exams i had took ages, way too long, but at least now i will get specialised docters etc who will evaluate me. So fingers crossed... it wasn't possible to have an appointment sooner... it's the way it is over here.

My PT advised me to go for a "walker" i now walk with a cane but i'm so tired and weak it's almost an impossible job to keep on doing this. Not sure if walker is the right word, in Dutch we call it a "rollator"

I hate the idea but on the other hand i must admit i need such a "device" and even maybe i will get to like it? Call my family docter tomorrow for a prescription so insurance will pay 4 it...

And a question: i lose so much weight but am eating the diet of a "bodybuilder", not gaining any weight nor muscles despite all the food & exercises i do, i lose so much muscle weight, it scares me, i exercise the parts of my body that still work but nothing happens after many months.... :-(

Does anyone have suggestions? I eat high protein diet, shakes, and exercise to gain muscles but nothing works, eekssss..... :S no good grrrrr....

And in my paralysed left hand i have muscle contractions (hope this is good English, tell me if not!) so weird...

Don't want to sound pitiful or so, but it scares me a lot!

Thanks 4 reading, hope i posted in the right section!

Take care everyone, I had a bad day, drained from a simple thing like walking... hopefully tomorrow will be better

Anja

 

[tmasters]

Anja,

Unfortunately, you will not like the walker. But I strongly recommend you use it anyway. A fall would break bones and then you would be in a wheelchair overnight.

Make sure to get a high protein AND high fat diet. Are you having trouble swallowing or a loss of appetite? If so, consider a feeding tube (PEG) to make sure you get enough nutrition.

I don't know if you have ALS but this disease is relentless and you have to try to stay one step ahead of it. Constant re-adaptations are necessary. Sucks.

-Tom

 

[momap53]

The rollator (with a seat) was a tremendous help for me initially. Anything to help reduce the fatigue of getting around and remain safe while doing so is a blessing. Just make sure you learn to use the brakes!

It's best to adapt quickly and carry on safely. Many of us fight the need for adaptive devices far too long and put our bodies at great risk.

If you do have ALS, your muscle building days are probably over. A diet higher in FAT seems to be a good thing with ALS and some research is showing that it may increase longevity.

I'm sorry you have to wait for the appointments. That's so hard to do.

 

[Al]

Trying to build muscle will probably damage the good muscle you have. Range of motion and passive exercises are the only ones you should be doing. The walker is a good idea. Save your energy for the important things.

AL

 

[Alyoop]

Anja, you will have to excuse me for asking strange questions, but on your other post you said that you are just getting your hand emg' d as you hav already had an EMG that was abnormal! Now you state you ar having a big 2 hour EMG. Even an extensive screening EMG for ALS will not take 2 hours believe me. I have had one.

 

[Anja]

@Alyoop: No problem, let me explain:

Over the past 9 months i've had several emg's for my foot and these were much shorter (about 20-30 minutes each). The one i will get is not only for my hand, it is for both arms and legs and it is including 30 minutes of warming up arms and legs in warm water (body temp). My hand is paralysed since saturday a week ago, my foot has been since 9 months (as well as part of my leg). My hand was getting weaker in the last months and has stopped working now. All emg's of my foot and leg were abnormal and the leg that is still working shows signs of weakness. It is a university hospital i go to and it is far away so they screen everything the first time they see you so you don't have to come back all the time. They must exclude all other possible causes. In the hospital i had the other exams they are not able to do this. I hope it is clear to you now, if not please ask!

 

[Anja]

@tmasters: I do have loss of appetite but i do eat, swallowing is okay, i'm often too tired to eat, so i have to force myself to do so, i'm in the process of being diagnosed, also for excluding other more serious causes, i had all general exams for obstructions, infections, etc. but i was fine except for the emg's, they were not, it started in my right foot (foot drop) and is in my right leg now too (severe muscle weakness) and as well in my left hand (paralysed since saturday a week ago). Tnx for yuour reply!

@momap53: I hate it I have to wait so long but can't do nothing about it, normally i'm a patient person except for now

@Al: Thanks! I didn't know that and will talk about it with my PT, haven't told him i do the exercises etc, kept it to myself to see what would happen!


Thank you sweet people for the advice! I have my walker since early this afternoon, it's a light weight one but still very heavy. I must admit it helps to walk more stable, better than the cane I had. It also has a seat and a basket so it's perfect. You were all right that I need this but I don't like it grrrr.... well i will stop whining about that, i will do my best to accept the new situation.

Yesterday i wasn't able to go online, too tired, i hate that! I'm a bit better now. I wish you all a lovely day/evening!

Anja

 

[Alyoop]

Anja, my total inability to focus on words and my worry over Kels behavior and trying to mend my friends hearts has caused me to make the biggest mistake of my life. I mean that, the biggest ever.

I will leave this forum and stick my stupid head in the sand. I apologize to you with all that I have and all that I am. I know it's not enough, but there it is.

This is an amazing forum, with incredible people. They will support you and care for you. Give you a hug when you need one, a pat on the back and an occasional shove as well.

My friends on the cup of tea forum, are among the most amazing people I have ever met. Join them and enjoy a chatter.

Bye for now and once again sorry

 

[Al]

Aly don't be silly everyone is entitled to the odd mistake. We need your knowledge and compassion.

AL

 

[Anja]

Dear Alyoop, I totally understand the situation and i accept your apologises and give you a hug back. Please don't leave because of this! We all make mistakes and learn from them. I made bad mistakes in life too. I forgive you and hope you will stay so we can start over now you know i am really anja.

((((hugggg)))

 

[laurel]

Hugs to Anja and Aly. What a bad 24 hours it has been. Anja you have a good heart.
Laurel

 

[notgivnup]

I Love happy ending....or is it that's beginning? {HUG}

 

[Anja]

Hugs back to you Laurel & notgivnup and i am so sorry that you all had a bad 24 hours. Let's move on and focus on all the honest and caring people i think they are the majority here!

xxx

 

[sadiemae]

We all need to make a promise to never mention the "K" name again, it's what they feed off of. HUGS!

 

[Anja]

We all need to make a promise to never mention the "K" name again, it's what they feed off of. HUGS!

Sounds like a great plan sadiemae ((((hugs))))