UGH - My First Post

[illus23324]

Hi, I'm a first time poster and I just need to rant a little if that's ok. I've been on the board reading - and find a lot of love and a lot of pain in here - sorry my first post is so ranting.

My father went to Mayo again yesterday. A while back they suspect the muscle shrinkage/nerve damage in his leg was either something like ALS or back problems pinching nerves. The neurologist they assigned to us was a total ______ , but I didn't say anything at the time.

Went back for MRI and EMG. MRI showed all kinds of back problems and neurologist said we were out of the woods - no ALS - and that she would forward us to a neurosurgeon to consult on possible back surgery.

So my brother and my dad went back yesterday and a follow up EMG (or is it ENG?) showed now that he had nerve problems in an arm now. Neurologist and neurosurgeon consulted and neurologist came back and discussed with my brother and my dad that ALS is the likely cause - she wasn't a 100 percent - need more testing - but because of the nature of ALS we should prepare fore the worst and hope for the best.

So obviously this is an intensely emotional situation. Had I known they'd be back to discussing ALS I would have gone to the appt. So I asked the neurologist to call me yesterday and we talked today.

I just cannot be anymore angry. First off she just started spouting off at 100 mi an hour. Every single time I tried to slow her down to ask a question she just talked over me and wouldn't let me get a word in. I finally almost blew up - but I asked, "It seems like your frustrated with me for some reason - I'm just trying to untangle all this - " She then said something like, "I'm not used to having to contact so many family members - I've discussed this over and over with your father." Numerous times she mentioned "I must have explained this to your father at least three times." The man is 75 years old!

Oh my profanity is probably forbidden on this forum God. I just about snapped but then I felt her anger management therapy kick in - I could almost sense the complaints from other patients and so she slowed down and from then on we had a pretty normal conversation.

There are two or three nasty reviews of her online and not one good one. She just seemed the height of irritated.

So here you are issuing one of the maybe the most terrible diagnosees to someone and you just have no people skills, are combative, irritated and generally just cold-hearted.

Ok. Rant over. What do I do? We either need Mayo to get us to a different neuro or we need to go somewhere else.

 

[GregK]

Some doctors should be in research and never touch a living person...

Getting a second opinion is expected in suspected ALS cases. Find one that has patient skills.

And, fwiw, I'm sorry you and your family are going through this. 8^|

 

[cheerleader]

A second opinion is always good advise for possible ALS- we had 3!

 

[illus23324]

Thanks so much, I should add this took place at Mayo in Rochester. Yes the neuro is quite the research star - I wonder why they make her see patients.

I live in Chicago - can anyone recommend a good place in the windy city?

 

[cheerleader]

Our third opinion was at Mayo in Rochester- as recommended by our Michigan neurologist.

 

[illus23324]

I'm confused as to why we haven't already been forwarded to an ALS specific specialist. So first they say no ALS - the neuro specifically wrote down the wrong diagnosis in May apparantly. Now they say come back in August? I'm so confused. How do you ultimately get a firm diagnosis?

 

[Atsugi]

ILLUS23324: Always get a second opinion when dealing with a terminal disease. Ask the nasty doctor for a referral to Mayo. They will do a complete and definitive diagnosis.

 

[chally]

i asked my Dr. where i might go if i wanted a second and recommended mayo in Minnesota. i haven't discussed this with V.A. yet and might not as i trust my DR. and don't want to travel that far nor deal more than i have to w/ V.A. anyone have experience w/ minn. mayo? chally

 

[MaxEidswick]

> Always get a second opinion when dealing with a terminal disease. Ask the nasty doctor for a referral to Mayo. They will do a complete and definitive diagnosis

Ditto that!

 

[Nikki J]

You should be seeing an ALS specialist. The nasty doctor if not an ALS specialist probably has another specialty in neurology if she is a researcher which I think is worse than seeing a general neuro as they are focused on their own interest. At this point look for a clinic that he could possibly use for his care and see if there is a good ALS specialist there to see next v( there should be). Does your dad live in or near Chicago too?

 

[lgelb]

In Chicago, at the least, there are reputable ALS clinics at Northwestern, U Chicago and UI Chicago. You might choose among them by the convenience of getting there, your health plan and/or your current docs. If none of those matter, perhaps a Chicagoan will chime in.

 

[gooseberry]

Chally, If we had seen the VA people here first for diagnosis I don't know that Steve would have ended up with 3 opinions either. They work with 300+ als patients regulaly as a dedicated team. Didn't have to explain,caution, etc. They understood.

 

[djbailey]

our second opinion was at Mayo in Rochester. Had a great Dr. that specialized in ALS. Unfortunately this diagnosis is the elimination of everything else. My wife was cleared of ALS and ended up with back surgery that seamed to help and she showed improvement for about 3 months. It then moved into her left arm. I tell you this because we would make the same decision today with the info we had then. However, today 1 1/2 years later the fused vertebrate in her back cause her a lot of pain, as she sits her in her PWC 95% of her waking day. If ALS is on the table then get a new Doctor. They have more then one at Mayo, and Mayo is one of the best places you can go.

 

[illus23324]

Thanks for the replies all. Here's my plan - since we've been going to Mayo in Rochester for a bit I'll request a different, ALS specific neuro and keep the upcoming appointments there. I'll then just start preparing now for where our second opinion in Chicago is going to take place after Mayo. If they give me any grief or won't change up then we'll just go to Norhwestern or UChicago.

Thanks again for taking time to help me out. This board is an invaluable resource. Reading through some of the newly diagnosed threads I can't believe the generousness and compassion of the people here.