Waiting for confirmation with ALS specialist

[Tchrcheri]

Hi all & thank you for allowing me into this group. My dad ( age 77) has been declining for several years in motor function. The last 2 years the decline ( since falling & breaking his ankle) has been significant. He is basically unable at this point to care for his basic needs & my mom helps him to do most daily living tasks. We have seen numerous neurologists who ran nerve conduction tests & other tests & reported it wasn’t ALS but rather pinched nerves, statin drug poisoning, etc. We have been trying to get a dx for 2 years but none of it has been correct & he keeps getting worse
He went to Stanford last week & dr there said she suspected ALS & referred him to ALS clinic in our home town for more testing next week.
I’m trying to hold out hope that it is something else but everytime I see him ( getting weaker, speech sounding slurred) it confirms in my mind that’s it’s ALS. This decline has been devastating to watch - my dad has been physically active & strong his whole life ( and wants so badly to get better)
Thank you in advance for your support & any feedback you can offer
I will update the group as I get more information next week
Thank you
CR

 

[Nikki J]

His symptoms sound worrisome yes. Were any of those other tests emgs?was the doctor who suspects ALS a neurologist? Do you know what her reasoning was?

you are fortunate to have an ALS clinic in your town. In order to prepare review the getting a diagnosis at the topof this subforum. The better prepared you are the more you will get from the appointment

good luck and let us know how it goes

 

[Tchrcheri]

His symptoms sound worrisome yes. Were any of those other tests emgs?was the doctor who suspects ALS a neurologist? Do you know what her reasoning was?

you are fortunate to have an ALS clinic in your town. In order to prepare review the getting a diagnosis at the topof this subforum. The better prepared you are the more you will get from the appointment

good luck and let us know how it goes

Thank you for your reply & yes he had Emg last year & has seen several neurologists
All said tests looked good, however when Stanford dr reviewed results last week she said results were not normal & recommended doing the tests again. She is a neurologist as well not sure about if she is an ALS specialist but referred my dad to our clinic here in town
Yes I will review info in sub forum
Thank you!

 

[Tchrcheri]

Thank you for your reply & yes he had Emg last year & has seen several neurologists
All said tests looked good, however when Stanford dr reviewed results last week she said results were not normal & recommended doing the tests again. She is a neurologist as well not sure about if she is an ALS specialist but referred my dad to our clinic here in town
Yes I will review info in sub forum
Thank you!

Update on my dad
He received ALS dx tonight
Slow progression so far over 6 years & just now showing loss of function in limbs but my family is devastated & in shock

 

[lgelb]

Very sorry to hear this news. We will support you however we can.

Best,
Laurie

 

[Bestfriends14]

I'm so sorry to hear of your dad's diagnosis. Your initial post was worry with his symptoms, but f course I was hoping the outcome would be different. Please feel free to ask as many questions as you need. The folks here are very helpful and knowledgeable.

 

[Tchrcheri]

I'm so sorry to hear of your dad's diagnosis. Your initial post was worry with his symptoms, but f course I was hoping the outcome would be different. Please feel free to ask as many questions as you need. The folks here are very helpful and knowledgeable.

Thank you, yes I have so many questions & am trying to read all I can
I will definitely reach out when I have processed more...

 

[Nikki J]

I am very sorry. If you haven’t found the resources post at the top of the general subforum worth reading. Some won’t apply like ssdi ( due to his age)

the search function can be helpful too as you can see advice from people that aren’t here any more. However definitely feel free to ask questions too. No matter what it is always a shock

 

[Tchrcheri]

Thank you! Now we received some news yesterday that continues to confuse us
Emg was run again & dr said parts of it were inconsistent w/ ALS & both sensory & motor neurons were being affected -???
Recommended that my dad go back to Stanford to have their more extensive emg done there. I’m very confused emg was clear last year ( but when Stanford dr looked at it she said it wasn’t completely normal) but for 2 years lots of tests & multiple neurologists telling us it wasn’t ALS has me baffled
Als specialist this week said it looked like ALS but wanted to run the tests but that was his preliminary dx & prescribed meds
Dr’s said yesterday after r doing emg they want to do more testing @ Stanford & collaborate to “get an appropriate dx”
This is a roller coaster
My dad has had symptoms for 6 years & is 77
His breathing talking & eating/ swallowing are fine it’s his limbs/ hands that are affected
He can walk w/ walker & has limited use of arms/ hands
God bless you all- this is a nightmare

 

[Nikki J]

The doctor who is now saying Stanford is the same one who gave the diagnosis?

If there are sensory issues seen that would be on the nerve conduction portion of the exam and not the emg itself. usualkt that means something other than ALS. the ncs also can have motor abnormalities that aren’t ALS. It is the emg that matters in ALS. If you can get the report, remove identifying data and post we might be better able to understand

i completely understand the roller coaster feeling

 

[Tchrcheri]

The doctor who is now saying Stanford is the same one who gave the diagnosis?

If there are sensory issues seen that would be on the nerve conduction portion of the exam and not the emg itself. usualkt that means something other than ALS. the ncs also can have motor abnormalities that aren’t ALS. It is the emg that matters in ALS. If you can get the report, remove identifying data and post we might be better able to understand

i completely understand the roller coaster feeling

Thank you Nikki
No it was a different dr who ran the tests yesterday ( he was sent to that dr by als specialist for nerve & emg tests)
both the Stanford & als specialist in our home town said they suspect als & recommended running tests but als specialist was certain it was als so we almost didn’t have him get emg & nerve test again yesterday - didn’t want to put him thru tat again
Dr said it wouldn’t help since there was no cure only help confirm dx
So now we wait for further dx....I guess? This is so hard
Hugs to everyone fighting this disease

 

[lgelb]

There can be abnormal sensory nerves in conditions like diabetic and other peripheral neuropathies, some of which are more common as we age. Sometimes past injuries produce sensory deficit as well.

So abnormal findings there do not rule out ALS, depending on what they are. If you could post the full studies we could be more helpful.