is this als?

[banksm]

Yes. Have been really doing that this week. Had a good normal week. Symptoms came back with a vengance and the diaphragm thing means I cant breathe properly and then I worry and am so tired. I felt terrible today and then saw consultant who said defo not m.e and I really wanted it to be that although I knew really it wasn't. It is difficult to act normally when I feel so ill as well. It is like my whole body has been poisoned and I gag on exertion. He said that degenerative muscle diseases need ruling out and I knew that too but hearing an expert say that really brings it home. What are your symptoms kosmoskatten? I don't mean to annoy those with ALS but I thought the whole point of this section of the forum is to air your issues if you have symptoms and are under a neurologist. My emg is Tuesday. Thanks.

 

[banksm]

Don't understand your animosity towards me Barbie. =(

 

[affected]

The problem is that you have to wait it out and not expect people here to constantly engage with you over every little thing that happens.

My husband took nearly a year to diagnose whilst he degenerated. Did he or I sit on forums here and expect people dealing with what we deal with to constantly pet us? NO Did we wait months between appointments? YES Did he keep living life to the fullest doing everything he could whilst he could? YES

You really need to leave this forum alone and get on with life, regardless of what diagnosis you get in the end, every day you have now is wasted if you don't grab it and live it.

You have no idea what we are all living daily, even if you want us to sit and commiserate with what you are living with daily.

 

[Clearwater AL]

banksm, ER (A and E as you call it) people are highly trained people who can recognize life threatening emergencies. I'm sure in your developed country if someone comes in with chest pains and shortness of breath at 9AM they don't leave them sitting there until 9PM.
The nurses and doctors in ERs see everything you probably couldn't begin to imagine... everyday, all day and all night long. If everyone could go to an ER and be seen within an hour... they'd have to have so many doctors there the cost would overwhelm the facility.
It is not uncommon for Neuro appointments to be 3 or 4 months apart. Even the first appointment may take months from the initial referral for reasons noted from the referring doctor. Wrote all that to write this... you've got to find patience. Stop the internet.

PS. Want to pay what we pay for health insurance a month? I have friends from Canada/Florida who grumble about Canadian healthcare but wouldn't think of signing up for one of our insurance company health plans.
(Many Canadians live there in the summer and Florida during the winter.)

 

[Kosmoskatten]

Banksm, you are welcome to read my thread on the forum, it is now closed due to inactivity. I am still in the diagnostic process;

https://www.alsforums.com/forum/do-i-have-als-als/24066-emg-showed-abnormalities.html

If you want to comment or discuss it further, please PM me privately.

I understand that you feel anxious, but you also have to trust the doctors. Initially I did not and I questioned everything they said, and since I am a medical student I tried diagnosing myself to some extent as well. It led me to nothing but hardship. I have now chosen to try to relax and wait for the next appointment. Living as best as I can. Not planning for anything fatal until I know if it is.

My best advice to you is stay of Google and unreliable sources on the web. Try to vent your worries with your doctor, and if you get very anxious, see a counsellor.

Now I am awaiting a follow up EMG, and of course there is stress. But it is important, even if this forum have members that have a lot of knowledge, to remember that they are fighting every day, they have a definate diagnoses, one that is lifechanging.

 

[CGARS]

Just read the entire thread, and when I someone like Barbie(who has earned enormous respect from me & others here) gets frustrated, I gotta shake my head.
Only those that have this and their loved ones truly understand the hell that this is.
There is a process that needs to be followed, just imagine the chaos if people got diagnosed with ALS all willy nilly like before following the right procedure?
Relax mon, if you actually have ALS then you're already dead, and living on borrowed time.
Good luck,
Casey

 

[banksm]

I have been diagnosed with guillian barre. It was not picked up in hospital as there was no neurology department and I could walk which is fairly unusual. I just thought that I would say what the diagnosis was, as it may help someone else in my position with similar symptoms. I will never forget this period of my life and although it has been truly challenging, I will never forget those on the UK mnd forum who supported me even though they were going through such pain themselves. Caroline, you are always in my prayers.

 

[MaxEidswick]

Guillian Barre Prognosis: Recovery usually starts after the fourth week from the onset of the disorder. About 80% of patients have a complete recovery within a few months to a year ...

Here's hoping you are in the 80%.

Kind regards,

Max

 

[affected]

That's great news!

I have a good friend who went through this disease many years ago and is perfectly healthy except a soft voice from the old trach site.

 

[banksm]

Yes. And I am getting better so thank you for the encouragement.

 

[Kosmoskatten]

Great that you got some answers. One of my best friends was diagnosed with Guillian Barre in her 20's, and it took a while for a diagnoses since she did not have that much of an issue walking and also severe asthma, so the breathing issues were not adressed properly. She has made a full recovery.

Best of luck to you and take care.

 

[Debd4l]

Hi,

glad you got a diagnosis..something similar happened to me last year after being sick with a virus and then a very bad cellulitis infection. My father in law is a doctor and he thought maybe I had GBarre also. But my GP and Neuro thought maybe MS or and MND. So I went for testing and they ruled out both and said CFS/ME. The one thing that helped me improve was going gluten free. I have not eaten anything with gluten in it for 9 months. I have recently got a few new symptoms so I have been concerned that maybe I do not have post viral CFS. But I am still so grateful to have made progress. Anyway, since your symptoms came on suddenly like mine did just wanted you to know that after 13 months I am a bit better. I also have a young child so I know how it is to be worried about being able to take care of them. Good luck..

 

[summerguy2007]

Right now my advice is to stay off the net as far as researching your problem. You don't know what it is yet and all you will do is scare yourself. Wait for the emg. Worrying will not change the outcome be it good or bad, all it will do is waste time that could have been spent better. We have all been in your shoes, some still are.

It could be anything at this point, so many of these disea ses mimic each other and it is hard to determine what it is. Have patience and listen to the drs, they are the one with the education and experience to make the decisions. Don't let this take over your life. While you are waiting, live your life to the best of your abilities and stay strong.

I agree with this. It's much better if you don't try self-diagnosis based on the internet & other information. There are many diseases that present as ALS to one degree or another. ALS is a relatively rare disease. The odds are in your favor that it is something else. ALS is diagnosed by process of elimination and then an EMG. I know because that is how I was diagnosed with ALS. MRI's, extensive blood work, EEG, pulmonary testing, and finally EMG for definitive diagnosis. I am sorry you are having all of these symptoms, and I hope you come to a favorable resolution. Try to remain positive. My best wishes are with you.

 

[jpier]

Hi, i suffered from severe guillain barred about 10 years ago.Never recuperated 100% from it.spent almost 3 years from onset to walking again without aids.saw 2 friends die from it.lucky u for getting mild type.Go on an enjoy life cause u got another chance at it.