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This is an area of active research, as when motor axons are involved, there has not been all that much success with typical treatments and therapies for motor deficits and/or weakness. It does definitely depend whether the virus clearly involved the nervous system-- ie the spinal cord showing clear motor neuron involvement.
The experts in this field have been trying more agressive therapies such as IVIG infusion in the hospital for those with spinal cord/ neuronal involvement despite few studies showing all that much improvement, mostly because we don't know what works best yet, and because there often isn't all that much motor recovery in these cases it is worth a shot. If the weakness is more secondary to diffuse illness and hospitalization, and the nerves and spinal cord arent directly invovled, that is a completely different story.
Who needs to make that determination? Where do you recommend treatment?
Do you mean whether or not there is spinal cord/ nervous system involvement? Typically this is done by a neurologist in conjunction with imaging-- you would need and MRI with and without contrast of the brain and spine. West nile is stil quite rare despite several surges in cases, including last last year. Because of that, I would definitely recommend a large academic center rather than community hospital for treatment to ensure you are working with a team or doctors and/or neurologists who have had cases of west nile before, and who might try new therapies. I can give you some suggestions based on your geographic location; there are several experts in this area, but any larger teaching institution will have some experience, and can contact the experts if necessary.
Awaiting answer to previous questions.
I understand. we are located in Virginia between UVA and Duke
Are there any institutions on the East Coast you would recommend we contact?
Got it- sorry I think there is a bit of a delay on this chat-- let me know if anything is out of order or confusing! Duke is actually an excellent option-- in terms of east coast overall, I recently attended a grand rounds presentation by one of the more respected experts in the field, I am trying to remember where he was from-- I actually feel like it may be COlorado (not the east coast), but give me just afew seconds I can double check.
OK- He was from Colorado (they had a lot of cases there a while back). I am looking at who has been at more recent conferences, only because they will be more up to speed on recent trials. I know from personal experience on the west coast at both UCSF and Stanford there have been recent cases along with colorado. Im thinking Boston would be your best bet at Mass General or Brigham and Womans, but let me check a few more things wuickly
Actually, im going to take the boston idea back-- because the conference tend to be held by the CDC; Johns Hopkins or actually going to the CDC directly would probably be best. The last conference in 2012 was heavily CDC- directed. There arent as many cases on the east coast in comparison to the west and more recently texas, so they may end up there from an infection control standpoint. Again, do think Duke is reasonable as well because it is close, and definitely up to speed in terms of clinical research and will have contacts they have met at recent conferences, especially if the weakness (inability to walk and move arms) is related to neurologic involvement, which it sounds like it might be.
Thank you for all of this. I have one more question. how do I get our GP to make the call or referral? we haven't had anyone to initiate this same query as yet.
They should be able to call over to the hospital or physician directly, or if it is for an outpatient assessment first, they can provide a referral via the clinic's referral system; ie if you were to go to Duke's neurology department, they can either call or fax a referral over to their clinic where they will find the appropriate person to see you. It sounds more complicated than it is, basically you should have the conversation with your GP and say you've been looking into different hospitals with more experience with west nile and want to be evaluated, and you can come up with a plan together. This can occur over email or the phone as well i they are already familiar with the case. Let me know if I can help in any other way!
We will try your suggestions. Thanks again for this help.
of course-- if something else comes up, if you put "Dr. M" in the question stem I will see it and get back to you! Good luck to you.