Best clinic in the PNW?

[ShiftKicker]

Hello
I have a follow up appountment at the ALS clinic next month which I am approaching with a bit of dread. I am scheduled for another emg then as well. There are no real options with regards to second opinions here on the Canadian west coast, so I may look south, should I desire a second opinion. Does anyone have any opinion on any clinics in the PNW or Idaho (even Utah?) that may specialize in diagnosis of MND-and know PLS well? Although the ALS specialist here in Vancouver is as knowledgeable as they come, I get the feeling they don't run into PLS that often. A larger centre ("center" in American!) may have more experience with incidences of PLS.
Many thanks

 

[LifeEnthusiast]

ShiftKicker, Maybe you could consider Sunnybrook's ALS Clinic in Toronto. All you have to do is have them send your physician a referral letter. He/She faxes it back and then they will schedule you an appointment. They will see anyone from Canada for a second opinion. I believe they will also take world-wide referrals. All that said, i'm not sure of the flight costs to TO versus somewhere in the States. Just a thought. All the best.

 

[lgelb]

SK, while PLS is less common, I'm not sure it's productive to clinic-shop just for higher volumes of it (which simply means higher MND volume overall). PLS is UMN-only ALS, not a completely different entity. I think you will get more insight from pts here on UMN-dominant issues than from the clinic per se for that reason. Still, you should end up with the clinic you like most.

But right now, if I understand, you are seeking a 2nd opinion for the MND label? So coming down from Vancouver you might look at UW in Seattle, certainly. Appointment lag time in months is definitely a factor so I would bring your plans to fruition. Why are you getting another EMG at the same place, though, or did I misunderstand?

 

[ShiftKicker]

I think they're conducting another emg (and will be doing so every 4-6 months) for the next little while to make sure I don't show any lmn signs and therefore fall into the ALS side of things.
With regards to finding another clinic for a second opinion- it was something suggested to me by a counsellor because I was lamenting the piecemeal process my diagnosis path has been and questioning the actual diagnosis. I'm exploring all options. Denial? Possibly!

 

[Tractor Boy]

Shift, I'm in the same boat as you. However, getting a 2nd opinion will not change your diagnosis. I'm also in the ALS Clinic (at UofM). And my neuro told me it would take another 2.5 years of "observation" to determine if I have PLS or ALS. Note I was diagnosed with my MND in 2012.

My last Clinic visit on Sept 16, I asked about another EMG but he didn't seem interested in doing one(?)

 

[Nikki J]

I understand what you are saying. You want to know if possibly you have no MND at all? As laurie said? We encourage people with ALS to get second opinions and I think if I had PLS I would do the same. The odds are an MND specialist is correct but you need to be sure. Perhaps it is denial but it is not unreasonable. If you were asking about a 10th opinion when you already had 9 agreeing that would be unreasonable. Will your Canadian health plan pay for a US visit? If not it might be cheaper to fly to Eastern Canada?

 

[lgelb]

Ah, now I understand, SK. I wouldn't see the point of repeat EMGs myself esp. unless/until you have sx that indicate another one, but it's up to you. Don't feel obligated.

If the issue is PLS vs. ALS, TB is correct that there is no point chasing that; it will find you, or not.

If the issue is do you have MND or some undetected spinal lesion/etc., and you haven't had a 2nd opinion on that score, you should certainly get one, at UW or another MND center. As for denial, are there features of your illness that you feel don't fit MND? If so, make a list and run through them in your next appt. or 2nd opinion. You certainly deserve to feel that the process has run its course, because then it's time to deal.

 

[ShiftKicker]

Re:emg, they detected chronic denervation only last time I had one- the specialist said Motor Neuron Disease was the diagnosis and that her "gut feeling" was umn onset als or maaayybe pls, but no acute denervation was showing with my last emg.
I'm on a bit of a tear with regards to looking at other possibilities. My spasticity is still spreading, but has actually reduced in intensity over the past couple of months- though I'm still pretty wobbly. My understanding is that MND is progressive, but my reduced/improved spasticity brings that into question for me.
I'm also asking my doctor about looking into functional neurological disorder to make sure all has been explored. It may seem odd to try to convince a doctor it's all in my head- usually it would be the other way round- but no specialist I've seen has said "definitely this". Everyone I've seen has used words like atypical, or "usually I see something different", which is why it seemed to take so long to get a diagnosis. I was hoping, with visiting another clinic at a larger centre and therefore with experience seeing a larger array of people with MND, they would be able to look at my imaging, make their own clinical evaluation, and hopefully come up with something other than a gut feeling.
Thanks very kindly for your suggestions and thoughtful questions.

 

[billbell52]

You need to think carefully about why you want a second opinion. Do you think you have been misdiagnosed? Do you think you have ALS? PLS is very rare so even ALS clinics will have few patients. They will conduct regular EMGs during the early years to see if you have any LMN symptoms.

Now I went to several doctors early on trying to get a diagnosis. I was finally referred to an MDA/ALS clinic. Initially they thought I may have MG but after several months of treatment they finally gave me a PLS diagnosis. I thought about getting a second opinion but I couldn't figure out the value of it. There is no cure and I could go out on medical leave with the diagnosis. I didn't think I had a curable disease. The worst is I could be later diagnosed with ALS although they assured me I would be near death if I had ALS.

 

[LouLou]

University of Washington in Seattle has a MDA/ALS Clinic. In our support group in Seattle, there are 5 of us PLS patients that were diagnosed there. Dr. Michael Weiss is the director of the ALS Clinic and an awesome neurologist. I am very grateful for the care they provide me.

 

[ShiftKicker]

Thanks for your replies. I apologize for not responding before now.
I just had a follow up appointment with the Neurogeneticist. When I was going through my initial diagnostic process, Hereditary Spastic Paraglegia (amongst others) were on the differential list of possibilities. This was the follow up to see if my progression indicated this. This specialist was able to answer a few things for me very definitively. One, I do not have HSP or anything heritable. Two, I do not have functional disorder. I actually got an eye roll when I broached the subject. She outright told me that the ALS clinic was the right place for me. I guess I have to defer to the experts if three of them agree. Dang. Next stop, EMG at the ALS clinic on Nov 24 to see if I have any electrodiagnostic evidence of LMN signs.
Denial stage of grieving level achieved. Moving on.