whats criteria is needed for an ALS diagnosis exactly?

[Nikki J]

I do not think that radiation is an issue for ALS. There are ongoing PET scan Mri studies with PALS. If the ALS specialists thought it was dangerous they would not subject us to serial PET scan radiation

if there was anything iffy on your exam or emg you would have been told to follow up with Professor van der Berg so he must not have had a suspicion of MND.

 

[PamP]

Ok, that makes things clearer thankyou.

 

[lgelb]

No! Why would they say "there's a possibility" if they don't think there is? That would keep you from pursuing a path to any other dx. That would also be a lie that would expose them legally. In whatever work you've done or advice you've given, do you say "No" confidently, and then turn around and say, "But maybe yes?"

There is no evidence that a single radiation dose such as occurs in a bone scan causes ALS progression, but it's irrelevant to you since you don't have it. You're boxing yourself in a corner for no reason.

 

[PamP]

Hi all and Happy valentines Day!

Maybe someone has a similar experience...
It started off with wasting on my right hip and lower back, i had 2 Mri's in november about 2 or 3 weeks apart with dotavision, then dotarem, soon after my fasciculations started. ( id had a bad fall last March on some stairs, injuring by back and hip)

My symptoms seem to have sped up drastically, (although i had an emg and was told i dont have als) my right leg muscles down the back are disaappearing, now the front, with non stop twitching in the same leg..my breathing is thin if i try to go up our stairs and im getting twitches and wasting in abdomen, ribs and round my heart i feel twiches. Plus terrible pain over my shoulders, particularly the right side.

My pain in my back wakes me at night sometimes.

Does anyone know about whether one should have, or is it safe to have Mri with contrast if you have Als?

On the mri' s they've seen lesions on my spine and one in my brain, but no diagnosis has been made, meanwhile ive lost 5 kilos and am terribly upset and feeling so in the dark about what is happening to my body...

 

[Nikki J]

There is no contraindication to contrast But you still don’t have als so it is irrelevant. Of course everyone should only have contrast when medically necessary. If it is recommended to help with finding a diagnosis go for it

 

[Bestfriends14]

You don't have ALS, so your question about contrast with ALS makes no sense whatsoever, as you are asking about a disease you do not have. You keep coming to the forum and repeating your same story to the same group of people here.

For the last time, you don't have ALS via your symptoms, your clean clinical exams, the opinion of the folks here, and your clean EMG. I apologise for the harsh tone, but seriously, be grateful you've been told you don't have this horrific disease.

I'm sorry you are having these issues and understand that it must be frustrating. However, continuing to come to a forum that does not apply to you is only exacerbating your frustration. The longer you focus on a disease you don't have, is the longer it is going to take you to find out what is going on. Please continue to work with your docs.

Best of luck to you, take good care, and please stay safe.

 

[PamP]

Contrast dye is a rare earth toxic metal, not a "dye" at all. it is known to interfere with neurons, settle in bones and brain. it is known that heavy metals are a cause of ALS according to Ammer El Chalabi, he mentioned something about this at a meet he did a few years ago..its also been noted that if a person with als is given contrast, it can rapidly speed up muscle wasting. not having any other answers from the doctors, i may be in the very early stages where they cant diagnose me yet as i dont fulfil all the criteria, obvs i hope to hell i dont have it, but im not being offered any other diagnoses's...perhaps look up Gadolinium toxicity and retention. sorry if ive been a nuasnace? that was not my intention, but i thought there was a space for us here if we were concerned about ALS....good luck to you all, i will leave and cancel as requested. Im still awaiting my final results by the way, hopefully they are ok still...

 

[lgelb]

Yes, this forum is here to address the concerns of possible ALS patients. We have dealt with yours. You have no clinical weakness and a negative EMG. What you may have is something to address with your doctors, but if they can't make any other diagnosis, that does not point back to ALS. That's nonsensical. Not everyone receives a diagnosis for every issue. Sometimes time is its own healer. Given your level of distress, counseling meanwhile is certainly an option worth considering.

Gad tox is very rare and not related to ALS, and is most often related to kidney function, which is always checked before using it in a scan. But if you don't want a bone scan, don't get one, or ask what contrast agent options are available where you are. The technology is evolving.

As regards ALS. there is nothing more to say, so I am closing this thread. Please do not start another. All the best.