jessie0054

Hello All: Just had a phone call from my son's Service Officer in reply to my many voice mails left yesterday. He said unless the rule had changed recently my son's Claim Started in ST. Louis and will finish in St. Louis. The information my son was going on was from someone at the 1-800 number. Jessie

Thanks again Hoppy: I'll have my son call tomorrow and give this a try!! Thanks, Jessie

So what happens now? Do we start all over :) Jessie

Hello Again: My son called me this morning, He said that his Claim File has been transfered to another state, Where he now resides. He didn't ask for the transfer. We had left it with the ST. Louis RO because we were told by his AMVETs service officer that due the the Complex Issues that if he was denied and we had to appeal that there wouldn't be another Service Officer that would take the Claims Appeal. Thses 2 issues on Claim are now over 13 months in the process. Can they transfer this without his consent?? I have rang the phone off the wall at his Service Officer's dest today and filled up his voice mail with out any reply from him yet. Thanks Jessie

Hi Hoppy: His Back pain is the low back, Since before he was diagnosed with Polycythemia he had complaints of Dizziness, Headace, weakness shortness of breath at times and Chest pain. For him usually when he starts having a headace every day it a signal that it's time to get a cbc done and then a phelbotomy. Jessie My only comments are that the symptoms he is having could be associated witht the back pain. Especially if it is high back or neck. I used to get so dizzy I could hardly stand when my upper trapezias (not sure about spelling) would spasm. This is a big mussle around the shoulder area up into the neck. I had a MRI that only served the purpose of knowing what was causing the spasm. I did neck excercises and the pain and dizziness went away. It might work to get into physical therapy for the pain. It took me 2 months to get into rehab at a VA clinic. From merck.com Myelosuppressive therapy: Myelosuppressive therapy may be indicated for patients with platelet counts > 1 × 106/μL, with discomfort from visceral enlargement, with thrombosis despite Hct < 45, and with symptoms caused by hypermetabolism or uncontrolled pruritus as well as for patients > 60 or those with cardiovascular disease who do not tolerate phlebotomy well.

Just wanted to say thanks to all. I just got off the phone with my son who called the PT. Advocate , Didn't get the Phelbotomy done today. The best they could do was to set him up an appointment for next Tuesday with the Hem/Onc department in Charleston. I just have now to copy off all his Cancer Treatment Records and get them to him by then. Jessie

Jangrin: Thanks, I called my son back and told him to call the Pt. Advocate at the VA in Charleston, SC He's doing that now. You may be right about the service Officer, I still haven't heard from him, So i'm not holding my breath. Will let you know what we find out. Jessie

Larry, Thanks i'll do that!! I have also called his Service Officer to see if he can get anywhere!! I'm waiting for a call back from him. Jessie

Pete53 Thank you for the prayers!!! Is there not somebody that i can complain to right now?? Jessie

Hello: I am so mad right now i'm shaking!! My son has a bone marrow disorder called Polycythemia Vera. Fot the last almost 6 years he has been followed by an Oncologist and had Phelbotomies done regularly when his HCT levels are at 45 or higher and had been told by the Oncologist not to let the HCT get any higher than 45 and best to keep it at the hightest 42 to prevent Heart attact or stroke. Recently he moved to South Carloina and has no Oncologist set up, Today he went to one of those VA Clinics in a mall and had blood test done because he is having symtomps of the disorder again such as fainting and dizziness, confusion and shortness of breath. His HCT is 52 right now. The Clinic refused him a phelbotomy because by their standards his HCT is qoute " Not High" Maybe not by their standards!! But with someone with this disorder it is very high. Do they even have doctors in these clinics?? He was also having a great deal of pain with his back and they told him they couldn't do a MRI because he has metal rods and screws. Anyone else have a problem with these clinics?? Jessie

I really hope you are right about this!!! You don't have to answer this question if you don't want to and i will understand!! What rate of disability do you recieve for this?? Thanks Jessie

:) Thanks Tbird !!

Hi Hoppy: Sorry that your Mother had this disease!! Yes, it can go into remission if they live long enough , But when it comes out of remission it is much worse. I just read a report last night that the University of Utah will recieve more that 2 Million dollars over the next 5 years to investigate the causes of Polycythemia Vera, essential thrombocythemia and idiopathic myelofibrosis. and lean to more specific treatments,yes, the VA hospital is one of the hospitals in Utah the study will be done. I would love to know the numbers of Veterans that have Polycythemia Vera . Jessie

Thanks John: I had overlooked that fact. Have another little problem. My son' called the 800 # today to check on the status of this claim and he was told " we are waiting for the Hematology report and something Gastric Report from the VA" He told her " Lady i have never seen a Hematoligist at the VA and the only Gastric thing i had done there at the VA was an endoostopy" She said she would check into it. Do you thing they are going to do another C&P this time with the Hematoligist?? Jessie

Thanks Hoppy: Good to hear from you again!! I'll look under the term { Idiopathic diseases] and see what i can find. I believe that due to the Addenum at the bottom of the C&P report that yes, he finds it service related at least 50%, BUT since this examiner states that " He has no current symptoms or disabilities related to this condition" My son handed the examiner during the exam a list of his current symptoms and medical ER Room treatment record of November 06 when he had to have a phlebotomy because he fainted at work. The examiner go's on to say that he had Phlebotomies at least monthly for a year [in 2002] and has had no treatment since then. The phlebotomy records since 2002 through 2006 should have been in his C-file, [ Gee, is he blind??] I think i can see where this is going!! Thanks, Jessie

------------------------------------------------- Do you still have the BVA link? I could not find this case at all- Berta: The BVA Citation # 0309503 Decision Date 5/21/03 Docket # 02-13-907 The Issue was Entitlement to service connection for Primary Myelofibrosis [ This is sorta the end stage of Polycythemia Vera] In an review of Polycythemia Vera writen by Dr. Ayalew Tefferi , Mayo Clinic. He wrote " The Development of Myelofibrosis and Acute Leukemia as part of the natural history of Polycythemia Vera. This was first reported in 1935 & 1938. Will you take a look at it. My son has a long list of Chemical and other solvents along with exposure to Jet Fuels containing Benzene not to mention the Jet Fuel Fumes and Exhaust. He was an Avation Structural Mechanic in the Service so he was exposed for long periods daily. Thanks, Jessie

Thanks Rickb54: Thats the way i'm reading it too, But then i'm not sure what i'm doing anyway. Can you answer this for me?? I found a case in the BVA that is very very simular to my son's that was granted on Benzene Exposure, Can i send this as evidence?? Thanks, Jessie

Thanks Ralph: I just talked to the SC and he said to sit tight until the rating board send it back. If it's denied we will go with an inadequte exam and ask for a new C&P with a Hem/Onc Dr. Is this the right way to handle it?? Jessie

Just got the C&P report of my son's of 2/2/07. This C&P was done with the Charleston Va, Not sure if this was even done by a DR as i don't see [DR] anywhere on the report. Any way his impression was [1] Appendix Cancer it is less tha 50% likely that it was caused by or a result of exposure to Benxene and other solvents in his Military Service. [2] Polycythemia Vera is less tha 50% likely that it was caused by exposure to Benzene and other solvents in his Military. It is at least 50% likely that his Polycythemia Vera or a precursor thereof was present to some extent at the time of his discarge from the service. He went on to say that my son has no current symptons or disabilities. { not true, According to this blood levels on that day he should have been ordered to go get a phlebotomy done then!!! He also said that it has been a year since his last phlebotomy[ not true as my son took his last phlebotomy done in Nov 06 and handed to the person during the Exam. Jessie

Hello all: As my brother has been recieving a NSC Pension for a # of years. We sent off several months ago for a copy of his C-File. Since we haven't received the file yet, should we make another request?? Should we be asking for it by something else?? We did send for his Service Medical Record and received them. Since he is receiving a NSC Pension wouldn't he might have made a claim for something service connected and was denied and was given the pension?? Thanks, Jessie

Yes, Larry and thank you for your reply. His condition is considered a Pre- Leukemia Jessie

Thank You Vicki: I will write that letter. I agree it should be done by a specialist!!! Jessie

Thanks Ralph: Yes, I did freak out after talking to my son. He did request a copy of the C&P to be releasted to me when it is ready. I am anxious to read what the DR had to say. And i'm going to print out your reply just in case!! I do think the C&P should have been done by an Oncologist!! I did do a quick search of the Board of Veterans Appeals and came up with a couple cases nearly the same as my son's and they were granted. So maybe there is still some hope left. Thanks again Jessie

Thanks Pete, for the encouragement!! But don't really see where he could afford to get an IOM done. Jessie

My son just called about his C&P done in Charleston, SC. Now we are very discouraged!! The VA called on Monday this week and said they had set the C&P up in Charleston SC since that is the closes VA to where my son has been staying since last fall. His file is still in the RO in St. Louis since we didn't want to move it at this point The C&P was for his Cancer and Polycythemia Vera [ Bone Marrow Disorder] The C&P DR was in Occupational Medicine [ We at least thought it would be done by Hematology/Oncology Dept.] The whole Exam took less that 15 min's and the Dr ask only 3 questions related to his Cancer. My son ask about his Polycythemia Vera and the DR wasn't even aware that he had this condition and told my son that he hadn't read his file yet. My son ask him about the Benzene exposure due to Jet Fuels he used in the Military. The DR told him that he didn't know anything about Benzene until 5 mins before the exam when he had gone to read up on it and that Leukemia was the only diease known to have been caused by Benzene!! I ask my son what about all the research materials that he took in with him and the reports of his last visit to the ER in November and his phlebotomy records and the records of his enlistment bloodwork which shows he had no abnormal labs and the one of his 1991 hospital record that shows he has elevated blood levels, He said the DR didn't evn look at them just pushed them aside. So i guess we are pretty much screwed now!!! Jessie