Length of time between symptom onset and VA diagnosis

[jcwitte]

For those of you who have gone strictly through the VA for initial symptom complaint all the way through to diagnosis, I am wondering how long it took. I called in November trying to get a follow up neuro appointment and the soonest they could get me in was June. Perhaps that is purposeful so as to see how symptoms progress? Or do things take this long in the private sector as well? Quite frustrating and I'm not sure if I should be frustrated with life in general or the VA specifically.

 

[Nikki J]

You said follow up appointment? Had you already been seen and this is follow up with the same doctor or at least the same department? It is not unusual to have a significant interval for this. Depending on the presentation 3-6 months is pretty common

if you mean how long does it take in the private sector for an initial neurologist appointment it varies considerably but 7 months is pretty long.

if you describe your situation more precisely someone should be able to advise

 

[rmt]

My husband got his care and diagnosis at the VA. What are your symptoms? What did they say at your initial appointment? Do they suspect MND? What tests have you had done?

 

[affected]

A tip is that the more detail you are able to share, the faster we can give an answer that is helpful and doesn't cost us too much time figuring out.

 

[jcwitte]

Thank you all for the replies. I initially posted this in the veterans with ALS forum as I was just looking to get a read on whether or not the VA neurologsts follow similar timelines as far as testing and ruling out, etc.

I initially went to my primary with muscle tightness and heaviness bilaterally in my arms. That was in July 2021. I had since seen the neurologist for an initial appointment, an electromyography, and then a follow up appointment to the tests. I was diagnosed with bilateral carpal and cubital tunnel and underwent surgery of the right arm for both conditions. I do not actually work with my hands to any great extent so I felt like something other than the usual overuse was the cause/problem.

Since getting the surgery in July 2022, the tightness and heavyness have come back and have extended into my shoulders, upper back and neck and I've noticed more and more that my fingers and hands feel tight. This morning, I actually struggled with my dominant hand to pick up a few of my daily medication pills that I spilled on the table (pincer grasp). I have also noticed for a few weeks now that I seem to be coughing alot more afdter meals or drinking as if things are going down the wrong pipe somehow.

Anyway, my initial post is mostly due to my wondering if perhaps the doctors have their suspicions but just holdout until they can see you again in a year or 18 months to see the progression vs your original visit. For me it has been nearly 18 months and I feel like they have no clue as to what the problem could be. When I was diagnosed with Carpal and cubital tunnel, I also had the same feelings of tightness in my upper arms which the dx given does not address.

 

[Bestfriends14]

Your symptoms point away from ALS, thankfully. Have you read this very important sticky?

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

This should allay any fears you have of a neuromuscular disorder.

 

[affected]

Thanks for the clarification. As the post Bestfriends refers you to tells you, that if you are not diagnosed you are only allowed to post here. Keeps things neat and tidy.

If you think you are developing new symptoms, please go see your doctor. You will really only get answers by having a physical examination. If you don't believe the VA doctors will do justice, go to a doctor outside there for peace of mind.

All the best finding what is going on.

 

[rmt]

I would recommend seeing your PCP again if you feel your symptoms have changed or gotten worse. If your PCP feels another visit to a neurologist is necessary, they can refer you and probably get you seen sooner. Or they can refer you to physical therapy or other specialists they deem appropriate. My husband was seen quickly by specialists once referred.

When his PCP suspected MND, my husband was seen very quickly for additional tests. And no, doctors don't suspect you have MND and not tell you.

 

[MupstateNY]

I agree with rmt (except that I know a dr who does NOT tell you when she suspects MND, but she's the exception that proves the rule). I would also encourage you to apply for Medicaid and patient financial assistance with provider networks and hospitals.

If you ever have trouble catching your breath from the coughing, I hope you'll bring it up with your primary.

Regards.

 

[Jhettinger]

Go to a civilian neuro with PCP referral
if neuro says ALS get a letter
make VA appt with PCP VA
take the letter with you