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-   -   Follow up Appointement SFSN (https://www.neurotalk.org/peripheral-neuropathy/87688-follow-appointement-sfsn.html)

Ivpound 05-24-2009 01:47 AM

Follow up Appointement SFSN
 
Well, went to see Dr. Latov at Cornell Weill as a follow up to my January appointment. I am currently on 3600 mg of Gabapentin and 60 mg of Cymbalta. The good news was that he did office tests, and said the SFSN had not progressed at all. No numbness, and he felt that since it was relatively static that it would not progress to motor etc. That was indeed good news. The only lab tests that I had had that pointed to anything was low B6, but he said even that maybe even that was not the cause (I asked about the car accident Iwas in, and he said it could have been due to a trauma to the CNS etc, who knows??). Anyway, I told him that a had a somewhat decent response to Cymbalta (sometimes there are even weeks when I dont think about the overal pain, but there are flareups, and it seems to be coming back somehwat), but still had pain, especially temperature sensitivity (cold bothers it much more than heat). He said that more than likely, there was some inflammatory process going on, that caused it, and that it wont get worse than what it is.

He said there is no reason for me to be as uncomfortable as I am, and he said we can go up to 120 mg daily on the Cymbalta. I told him I read that there is nothing to indicate that doses higher than 60 mg are any more efficacious. He said due to my size (although I have lost 25 lbs, 50 more to go), and how I might process these drugs that that was not the case. He then lapsed into different medical literature and studies he has written etc. I also complained of achiness, and he said it is safe to take the 12 hour aleve if I wanted to (studies have shown that it ups the bioavailability of Gabapentin--he did not seemed concerned by this). He also said that I did not need to see him for another year, and felt confident that the cymbalta increase would help. Any thoughts on this? When he told his nurse that, she smiled at me and said that that was a good thing. I thought maybe he did not like my cologne or something.

Any insights,

Thanks,

mark

mrsD 05-24-2009 02:01 AM

It is good you are not progressing.

But who is going to monitor your liver functions during that year? Your GP? Taking a high dose of Cymbalta for a whole year suggests that its potential for liver damage be watched. I'd have tests every 6mos if it were me. Also Cymbalta raises blood pressure.
http://patientsville.com/medication/...de_effects.htm

Many medical things are self limiting. You no longer use that Coumadin, and your viral illness/rash may be dormant.
If a virus is at fault, it may return, or not depending on your
immune status.

For now, be relieved. And use the drugs wisely.

daniella 05-24-2009 07:30 AM

I am working up to 120 of cymbalta. I am very thin though and they suggested it still. I do know I was on 60 for awhile and it did nothing for my pain and they said it was more the depression dose. Mrs D I remeber yous aying that and I had high liver in the past which finally is in the normal range so am going to ask next time but my blood pressure is low. I have the temp issue too to cold. You said the aching and I do too but was wondering do you have cramping? I often feel so cramped and my neuro said that is like a muscle spasm and I have started klonopin. I never heard of Cymbalta though being for inflammation not to say it is not. Do you take omegas?

mrsD 05-24-2009 08:04 AM

In rats....this is one study on this subject:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

This study does not include both used together ...also in rats:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

This paper discusses different types of pain in RATS, and
antidepressants:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

There are only these 3 papers on PubMed when using the keyword search "duloxetine inflammation"

There are NONE for humans.

Raglet 05-24-2009 05:30 PM

Grrrhhh, if a doctor told me there is no need for me to be as uncomfortable as I am, I think I would want to slap them (non-violently of course!)

Goodness, when it comes to feeling uncomfortable - geesh you are going to be the expert on that!!!! Seems to me that PN is not remotely logical in terms of how much pain someone is in - and if it hurts, it hurts,

Actually I tend to have 6 monthly or yearly reviews with my neuro, and my GP handles everything else - for anything urgent I have to go to neuro daystay at the hospital which is a pain. But, if I wanted to schedule more regular neuro appointments then I could ....

Do you have a good GP who can handle things meanwhile? That makes all the difference in the world ....

feel better soon
raglet

dshue 05-24-2009 07:11 PM

Quote:

Originally Posted by Ivpound (Post 514251)
Well, went to see Dr. Latov at Cornell Weill as a follow up to my January appointment. I am currently on 3600 mg of Gabapentin and 60 mg of Cymbalta. The good news was that he did office tests, and said the SFSN had not progressed at all. No numbness, and he felt that since it was relatively static that it would not progress to motor etc. That was indeed good news. The only lab tests that I had had that pointed to anything was low B6, but he said even that maybe even that was not the cause (I asked about the car accident Iwas in, and he said it could have been due to a trauma to the CNS etc, who knows??). Anyway, I told him that a had a somewhat decent response to Cymbalta (sometimes there are even weeks when I dont think about the overal pain, but there are flareups, and it seems to be coming back somehwat), but still had pain, especially temperature sensitivity (cold bothers it much more than heat). He said that more than likely, there was some inflammatory process going on, that caused it, and that it wont get worse than what it is.

He said there is no reason for me to be as uncomfortable as I am, and he said we can go up to 120 mg daily on the Cymbalta. I told him I read that there is nothing to indicate that doses higher than 60 mg are any more efficacious. He said due to my size (although I have lost 25 lbs, 50 more to go), and how I might process these drugs that that was not the case. He then lapsed into different medical literature and studies he has written etc. I also complained of achiness, and he said it is safe to take the 12 hour aleve if I wanted to (studies have shown that it ups the bioavailability of Gabapentin--he did not seemed concerned by this). He also said that I did not need to see him for another year, and felt confident that the cymbalta increase would help. Any thoughts on this? When he told his nurse that, she smiled at me and said that that was a good thing. I thought maybe he did not like my cologne or something.

Any insights,

Thanks,

mark


Hey --

I recognize Latov is a big guy, but when he says "it won't get worse", well, yeah, OK, but what about making it get better? They always forget that part.

It sounds very similar to the guy, Dr. David Cornblath, I saw at Hopkins last August. I was told that I should be OK within six months. Not even close. Things have gotten much worse.

My advice: go see someone else. It seems that your guy has broken up with you. Get with someone new. A year? I don't think so.

-- Dennis

antonina 05-24-2009 08:35 PM

I too felt "blown off" by Dr. Latov.
 
I saw him about 5 years ago...had numerous blood tests, emg, ncs, the WORKS. His advice: B12 shots once a month. He did not prescribe Neurontin or any other med. My questions to him went unanswered/sloughed off. One example, I asked if my inability to walk w/out a walker was related to PN. He mumbled something inconclusive and that was the end of the visit.

I saw him for a total of 4 times. I brought my daughter w/ me for the last 2 visits. She left just as puzzled as I was. I'm glad she was there for a reality check since I had started to think I was a major pain in his butt & asked just too many damn questions for my own good.

I found him to be dismissive and indifferent. Perhaps he finds research more rewarding than interacting with patients. I have searched in vain for a neuro who monitors my progress and on whom I can count for consistent follow-up care. One would think that New York City had a plethora of such neuros but I have not found one yet.

BTW, I saw his associate (after Latov quit Medicare) who was a bit better at communication but not by much. I am looking into Johns Hopkins...many posters here seem to have had positive results. (except maybe not Dennis)

nide44 05-25-2009 09:33 AM

it took me a while, (and 'firing' not just a few docs) to finally be in the Hopkins Health Care System, all of my docs now are at JHH.
I find that the follow-up and regular checks are best left up to my PCP, who has access to all my records from my neuro, to my orthopaedics. And all of them have access in reverse, to each others records on me. She coordinates with my neuro, every step of the way.
My neuro is great, he's the head of the dept (Griffin), but I generally see his PA (Tami), who has been trained by him for over 5 yrs. Either one, makes me feel as if I'm getting the best treatment possible.(And my PCP is wonderful- she's totally empathetic to my PN problems, and my general welfare)

mrsD 05-25-2009 09:53 AM

Dr. Latov's focus:
His disclosure information:
Quote:

Weill Medical College of Cornell, New York, NY; serves on as a Scientific Advisor for Quest Diagnostics and is a member of a Steering Committee, Talecris Biotherapeutics. Dr. Latov receives royalties from Demos publications and has received research support from the NIH and Talecris Biotherapeutics. He holds stock options in Therapath LLC and is the beneficiary of license fee payments from Athena Diagnostics to Columbia University. He has given expert testimony in legal proceedings related to neuropathy and has prepared an affidavit with regarding to the legal proceeding related to neuropathy
from http://www.pmrjournal.org/article/S1...038-5/abstract

Talacris makes IVIG.
Therapath is a diagnostic testing company.

His most recent papers on PubMed are in the area of using IVIG.
http://www.pmrjournal.org/search/qui...author=Latov+N.

He appears research oriented, and diagnostically involved.
This is sort of how his book reads too.

antonina 05-25-2009 11:56 AM

Thanks Mrs.D for shedding some valuable light on
 
Dr. L's sources of royalties, licenses, etc. That seems to validate for me where his interests lie. There is a large section of his office devoted to IvIG patients receiving infusions. I seem to recall a time when docs were disallowed ownership interests in labs. Maybe the way around this prohibition is to simply own shares.

Wonder if the docs in the link you provided who had "nothing to disclose" would be more objective in their rx & testing recommendations.

I'm very impressed by your ability to discover all these helpful resources. Thank you very much.


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