Second Opinion on ALS

[whistler]

My brother is in the Hospital and he was told they think he has ALS. They promised us a second opinion with an ALS specialist situated in Vancouver. He is in ICU on a ventilator. Now they are saying they won't be sending him to a ALS specialist but have another Neurologist in the same hospital look at him. We are confused first they said this outside second opinion would be best. Now after waiting 2 weeks he isn't getting one. I have read many times that this disease is difficult to diagnose so you need to see someone who specializes. Does anyone have some advice Please.

[trfogey]

Originally Posted by whistler

I have read many times that this disease is difficult to diagnose so you need to see someone who specializes. Does anyone have some advice Please.

First of all, welcome to the board. Second, I'm sorry to hear of your brother's diagnosis. Hopefully, he, you, and the rest of your family will find the support and information you'll need here to get you through the next few weeks and months should your brother's diagnosis turn out to indeed be ALS.

ALS is not a difficult disease to diagnose in most instances, but because it is quite literally a death sentence for the patients, most neurologists are loath to be the first doctor to make the authoritative call. It's much easier to send you to the specialist clinic and let the clinic folks dot all the i's and cross all the t's.

If your brother is not referred to the nearest ALS clinic by his current doctors, he should ask for that referral for the future. Most any neurologist can diagnose ALS once it has progressed enough. It is ALS specialists that will pick up on the unusual things that might point away from ALS and toward something else.

Good luck to all of you.

[kmendsley]

Welcome, and sorry for your brother's diagnosis.

I second trfogey in getting that referral to the clinic. This way you don't wish you had done it down the line, or if it turns out to not be ALS, other diagnostic tests can be done to find out what it is your brother has.

Good luck.

[Ms. Pie]

I'm so sorry for your brothers diagnosis. Please let us know if you have any questions at all. Anything at all. Welcome to the forum. We can do this.

[notgivnup]

Whistler, I am so sorry about your brothers diagnosis, I have no sage advice to give to you but know we are here for any support we can give to you. There may be others that have more info for you so keep asking questions. We welcome you to our family who can hold your hand and be there for you at every turn. My thoughts for peace and comfort are with you and your family. {{HUG}}

[Al]

I think there is a Neuro in your city that is familiar with ALS. Find out if the new 2nd opinion guy is familiar with ALS.

AL.

[laurel]

Which hospital is your brother in i.e. is it Abbotsford? If so, Abbotsford is not known for first rate neurologists. Much better to be assertive and insist on the ALS Clinic at GF Strong. I'm sorry about your brother.
Laurel

[brenda barton]

In Jan 2011 my GP sent me to Dr John L Diggle, a neurologist through Surrey Hospital. He did all kinds of tests eliminating several diseases. In Nov he me booked with GF Strong to get a 2nd opinion that I had a variation of ALS. They agreed with him and both are "stumped" that my muscle pain is only on left side. The pain was severe enough they began Botox injection Dec 28. There is an new medical facility opened this past June called the Jim Pattison Outpatient Clinic. Located on corner of 140th St and Fraser Hwy. Your/bros GP should be able to refer you to Dr Diggle. The people at GF Strong told me "Diggle knows his stuff and ver smart man". They do not spit out a diagnosis. I've been over and nothing is definite.

[Toto's Dorothy]

I'm so sorry about your brother's diagnosis. And I would compare an ALS Diagnosis to Cancer. Second opinion and the very best Doctor. (I know it's like apples and oranges, but you get my drift!)

[whistler]

Originally Posted by laurel

Which hospital is your brother in i.e. is it Abbotsford? If so, Abbotsford is not known for first rate neurologists. Much better to be assertive and insist on the ALS Clinic at GF Strong. I'm sorry about your brother.
Laurel

Thank you for your reply. my brother is in the Abbotsford Frazier Valley and Cancer Hospital. Just found out this morning that after refusing to see him last night they apparently had a change of heart (after we insisted) and he will be seen by a Doctor Greenberg an Als specialist connected with UBC. He is stuck on a ventilator in the ICU and I sometimes think they just want rid of him.

[whistler]

Thank you so much for your informative and thoughtful reply. Had a bit of good news today. After first being told that because he is on a ventilator that they would not be having a second opinion today they changed their mind and he will see a Dr. Greenberg an ALS specialist connected some way with UBC. She sounds good but because he is on this ventilator we are restricted to where they will take him.

[Toto's Dorothy]

I will be praying for your brother, you and your family. I am still amazed that we are in the 21st century and often times I feel like we are still in the stone age times. You must be the proactive one for your brother.

Prayerfully,

[Mpiresteve]

Sorry to hear about your brother. I hope they are able to diagnos him soon. Keep your head up and stay positive for him.

[whistler]

We are so overwhelmed by your love and support, what an amazing group you are. Thank you all so much for the good advice. We just got great news, Specialist has now agreed to see himnext week so we will be getting the second opinion. We had to call directly ourselves and say we couldn't understand why he couldn't be seen and then we got a call that they would see him.

He is fully ventillated and has a tracheostomy, feeding tube, and limited use of his right side, he also has contracted MRSA, stenotrophomonas maltophilia, and klebsiella planticola while in the hospital. We will be interested to know how long he has had ALS and what stage he may be at. He doesn't seem to be in any pain, but has some dementia.

[whistler]

Thank you. Did they have the genetic testing done to find out if it is familial?