Symptoms and how long diagnosis take

Hi,

It would be appreciated to gather your experiences regarding how long the diagnosis took and the symptoms you had at diagnosis time.

I am suffering non clinical leg weakness and some subtle vocalization issues for 3 years (widespread fascs) and I don’t have any diagnosis yet.
Currently I can still run and to cycle, although I have had decreased my pace.

Were anyone of you at a similar scenario as I currently am? How long did it take your limbo status to be over?

Regards.

Past threads here to help see reported symptom history and diagnostic journey thus far:
https://www.alsforums.com/forum/showthread.php?t=36963
https://www.alsforums.com/forum/showthread.php?t=37755

Three years without a diagnosis makes ALS less and less likely, especially if you are still able to run and cycle. Most people with ALS are diagnosed within a year of symptoms, through some can take a little longer. But generally not more than 2 years.

Are you currently seeing a doctor? I see in the past you’ve had clean clinical exams and clean EMGs, so that would seem to rule out ALS. If you’re still concerned, then time to see your doctor again.

I'm your outlier with the diagnostic process taking most of 3 years. I am also a slow progressor as far as ALS goes. I am 5 years post diagnosis and can still walk (not far) use my hands and talk. I don't know if it is related or not but at this point you are 3-2, keep fouling them back as long as you can.
Vincent

Most people who had a long path to diagnosis were not told their exams and emgs were normal. One or both almost always have something worrying and the doctor will say there is definitely something wrong. We don’t know what it is yet. Even then most people who are told that end up having something else - not ALS

Hi,

Thank to all for your answers and advices!

I will come back to the neuro and I will let you know about any new he provides me.

By the way, @Karen,@Vincent: Which was your physical 3 years after onset? Were you able to run (for instance) or it was not the case? Any specific critical limitation after 3 years?

Thanks in advance!

Regards!

Hi!
A quick update regarding my case. This week I have taken a new blood test and I the following abnormalities have arisen:

- CK 525 U/L Reference values interval <171 UL
- Aldolase 10.4 U/L Reference values interval <7.6 U/L

Any of you experienced these alteration patterns at time of diagnosis? Do you think these abnormalities could be linked with ALS or these could be likely be pointing to other muscular disease?

Any comment would be welcome.

Thank you very much.

Regards.

CK and aldolase are muscle enzymes. Elevated levels may be seen in ALS but are not at all specific for ALS. Elevated levels may also be seen with heavy physical exertion, dehydration, muscle trauma, alcoholism, intramuscular injections, immediately following EMG, as a reaction to some medications (particularly lipid-lowering drugs), and with primary diseases of muscle (of which there are many).

An exam from a neurologist can sort out whether there is clinical weakness. And if there is, then an EMG can distinguish between many of the above conditions including primary muscle disease and ALS.

Again, your long history of symptoms along with clean clinical exams in the past and history of clean EMGs suggests you don’t have ALS. See a neurologist if you still have concerns.