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Topic Neurologist visit yesterday Go to previous topic Go to next topic Go to higher level

By Lotsapies On 2011.01.04 14:05
I saw my neurologist at the VA yesterday. He is also a movement disorder specialist. It didn't go well. This is a doctor I have seen two other times where he told me that I had PD. Yesterday he backed away and said that I have parkinsonism symptoms. It was almost like he had a directive from the big brass at the VA to squash the PD claims for disability from Agent Orange. He said that the heavy feet, hard breathing and leggs feeling like mush and having a hard time swallowing is not related to PD. He had no answer for those symptoms. But get this. He increased my dosage of sentiment and is going to wean me off of keppra. I don't understand what he is doing as well as my wife Sally. He rushed us out of the office as we were of course concerned and did not want to answer any of our questions. We don't know what to do now esspecially since we have turned all of my medical care over to the VA.
Has anybody else had this happen to them?

By caregivermary On 2011.01.04 15:40
Sorry to hear your visit with the Dr. was not productive. I can tell you are feeling at a loss. I'm a little confused too.
Parkinsonism vs PD? I'm sure you have searched the internet and have found there are indicators that Parkinsonism/PD for Vietnam Vets exists relative to agent Orange. The research suggests either one of them can be the case for VN Vets and also suggests disability applies. Unfortunately, you may need to push back at this Dr./VA to make a better determination. You probably already know this but if your symptoms markedly improve with the use of sinemet, this usually confirms the dx of PD. If not, then the brain degeneration is more widespread and other avenues need to be explored. If that is what your Dr. is saying where/when is the additional testing, etc. to determine the cause of your Parkinsonism. I would be going back to them on this asap.

I believe you are in California and you could get a second opinion from the Parkinson's Institute in Sunnyvale. They may be interested in your case and may help with support for the cost of the office visit, etc.

Take care and I'm sure others here will have some opinions and advice.

By Lotsapies On 2011.01.04 16:08
Thanks for the response. The Dr. said that he wanted an EEG done. We told him that I have already had one from my civilian Neuro, and that the VA has a copy of it in my file. He also wanted me to see a shrink, thinks that this is all in my head. After yesterday I probably do need to see one. If for anything else, to calm me down.
Sally did take the bull by the horns and called the VA in Sacramento today. She really read them the riot act and asked for another appointment with a different neuro plus getting the meds straight. I am suppose to get a call this afternoon.
About the Parkinsonism. The VA is "not" accepting parkinsonism as a legal claim at this time. I don't know why but that is what my VA Rep says.
We were really shocked yesterday after driving 250 miles for a ten minute visit and being rushed out of his office with alot of unanswered questions.

By lurkingforacure On 2011.01.04 21:47
Sorry, this does not work for me. Sounds like they are trying to "rediagnose" you so that you cannot claim disability/VA benefits. I would be really ticked off and would not accept his new opinion. I would ask for a complete copy of your medical file from him, including all of his notes and his staffs, whether handwritten by the doc or transcribed by someone for him. See what he says in the file and compare that with what he told you.

The symptoms you describe are all experienced by PWP everywhere. And like someone else said, if they improve with sinemet, that does seem to pretty much mean you do have PD. It'd be great if you did not have PD, of course....but unless he can explain how the gold standard drug for treating PD helps you if you don't have PD...which he probablycannot, then he needs to correct his diagnosis, IMHO.

Wow. I'd need to see a shrink, too. Don't fall into the "it's all in your head" trap. I know of several people who were told this, all of whom went on to find out they really did have PD, Lyme Disease, MS, or some other malady. It seems docs say this when they don't know what they are doing. Sorry you are going through this.

By LOHENGR1N On 2011.01.04 23:48
I haven't read the V.A, reports or Their stand on the whole P.D. vs. Agent Orange situation, however I'll give you my take on what seems to be happening. I hope I'm wrong! This looks like it might be a matter of semantic's, to Us "laymen" Parkinsonism, Parkinson's syndrome and Parkinson's Disease are the same. However to the Medical Field Parkinson's Disease is idiopathic (cause unknown). So to have Parkinson's syndrome or Parkinsonism attributable to a cause be it Manganese Intoxication or Agent Orange then it can't be Parkinson's Disease! As noted Parkinson's Disease has no known cause! I do hope this isn't the case. Many Vets were told that all that was needed was proof of boots on the ground and you were "in" with this medical coverage (heck my V.A. agent even ran across a parking lot to tell me this). It now sounds like this was written with a big escape clause in it! Call me cynical but....Hang in there lotsaBob! We're all pulling for You! Sincerely Al.

By karolinakitty On 2011.01.05 10:32
Man, I hope this isn't what it seems. I wanted to do some research before i answered but Al beat me to my reply. They were trying to, at the last minute decide whether it was "old age" or A true effect of agent orange. They were trying to say PD was just old age. In the end they worded it as Al said and left a clause in there just so they could escape it. Fight for it Bob. You have PD and it isn't just an old age disease, as i put in my letter to Sen Webb........

By lurkingforacure On 2011.01.05 11:59
Also: pull some stats for the powers that be that show how many PWP are young onset, which is younger than 50, and 50 is not old! My spouse was dx'd at 43, I know someone on another forum just got dx'd he is 41, I know others who were dx'd in their 30s and even in their late 20s. PD being just an old person's disease is crap.

Be sure to include, hello, Michael J. Fox, a young onsetter himself, in his thirties if I am not mistaken when he was dx'd and he admits he had symptoms ten years before, as well as Brian Grant, the famous athlete dx'd last year, I think he is in his thirties as well.

PD can hit anybody at any age!

By karolinakitty On 2011.01.05 12:07
Yeah Lurking... i included in my letter to Senator my guy is only 54, how is that old age??????

By Emma On 2011.01.05 13:24
Any age is right! My 19 year old granddaughter was just diagnosed with Wilson's disease but initially the movement disorder specialist thought that she might have young onset Parkinson's so it is possible even at that tender age.

By Lotsapies On 2011.01.06 11:40
My wife and I found out yesterday that my neurologist at the VA believes that PD is an old age disease. He actually co authered a published paper stating that. Kinda blows my ship out of the water.
I will be seeing my civilian neuro today. Will keep you guys posted on the outcome. Also, thanks for all the support and insight you all have given.Lotsabob.

By lurkingforacure On 2011.01.06 13:11
Good to know, yes, but how does he explain all the young onsetters out there? Plus, the number of young onsetters is increasing worldwide. What say the good doctor that that? Numbers don't lie.

By caregivermary On 2011.01.06 15:52
Tell your VA doc he can get a refresher from the VA doc in Reno who is a movement disorder specialist and I don't think he believes PD is old person's disease. This guy needs to get another JOB!

By parkinit On 2011.01.09 13:46
Glad you are seeing a civilian nuero. We are also on the PD list with the VA. We had all the proof and supporting documentation from civilian docs before we went to the VA. There didn't seem to be an issue when we went that route.

Good luck and hang in there!


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