Activity

Lovely_28
Lovely_28 joined the group
2 months ago
Lovely_28

Lovely_28

Maryland, MD
  • Gender Female
  • Age 28
  • Relationship N/A
  • Connection to MS
Daniel-
Daniel- joined the group
5 months ago
Daniel-

Daniel-

El Cajon, CA
  • Gender Male
  • Age 48
  • Relationship Married
  • Connection to MS
damien_usmc
damien_usmc joined the group
5 months ago
damien_usmc

damien_usmc

FPO,
  • Gender Male
  • Age 25
  • Relationship Divorced
  • Connection to MS
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
7 months ago
Good morning,I haven't been on here for awhile, got some disturbing news on last MRI I had, at least I am due for my Infusion this month which will help. I absolutely have appreciated all your advice you have provided me in the past. I am getting really upset and frustrated with the VA at this point. I have provided them with ample evidence, my neurologists have provided them with records & MS VA disability forms...plus had my evaluation done in January from Compensation and benefits VA doctor. He even stated my MS is service connected, that the Coast Guard basically screwed me over, I should've been diagnosed me due to all the MRI evidence I had while I was still active duty. They have his recommendation that since my MS has progressed, I am not able to work anymore. They keep stating everything can be done through ebenefits, which I've done, but of course a month later I receive another letter in the mail requesting more information. Not understanding why they expect us to do everything online, but they cannot email or message us when they need something!!! Sorry I am just extremely upset, and I really thought you would understand, just really needed someone to vent to, any advice you may have you know I will appreciate so much!! Thank you!!
Rae_Rae
Rae_Rae joined the group
8 months ago
Rae_Rae

Rae_Rae

Canton, TX
  • Gender Female
  • Age 47
  • Relationship Divorced
  • Connection to MS
jenny-with-ms
jenny-with-ms joined the group
9 months ago
jenny-with-ms

jenny-with-ms

Pittsburgh, PA
  • Gender Female
  • Age N/A
  • Relationship Married
  • Connection to MS I have MS
golgotha
golgotha created discussion Using a combination of VA and a private MS specialty clinic
9 months ago
I'm a service-connected MS veteran who is using VA medical care to deal with my MS. This has advantages in that the VA does not hesitate to issue drugs (everything from Ocrevus/DMTs to Vitamin D) and also medical equipment -- they're great in that regard.The problem is doctors and nurses. Even though I use 2 VA "MS centers of excellence" one is a laughable name plate that does nothing but refer me to the second one, and the second is just a department in a large VA hospital. My neurologist is great, but he's only there a couple of days a week (he also has a private practice) and he is simply swamped with patients. Nurses are hit-and-miss, with many not having a firm handle on MS. Getting an appointment to deal with changing symptoms is insane. Overall, I'm dissatisfied with the communication and care.The VA does have the "Choice" program and some other programs that allow veterans to use private practice clinics instead of the VA hospitals.What I'm curious about is if anyone is using this; is anyone using a private MS specialty clinic and having the VA pay for the care?Does anyone have experiences in this?Obviously I'm curious about the costs the VA covers, the bureaucratic headaches, and procedures you had to go through to accomplish this. Thanks in advance.
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
10 months ago
I totally agree with you about the treatments that we are put through, why not start us off on something that actually will help as the first one. Also agree about the profits that are obtained by insurance companies and pharmaceutical companines. I really need a good laugh today, since this is my normal everday routine. I hope I do not offend, but if I cannot laugh at myself I would completely stay in a state of depression! Found manyActually not sure how to attach any pictures on here trying to figure it out not working out too well. I have to say I really am happy that I joined this group you have been a great help to me!
golgotha
golgotha replied to discussion RE:VA Representative New Orleans
10 months ago
I started on copaxone too. But your story provokes one of my favorite rants. :)I started on Copaxone acquired lesions, then Gilyena acquired lesions, now my sister and I both are on this treatment.This is the "escalation" strategy of treatment. I agree with this doctor's views. That model is great for generating or protecting profits for the shareholders of for-profit insurance companies.But what it means to me, the patient, is that I suffer (literally!) brain damage that will take many, many years or never be repaired. And for what -- to bolster an insurance company's bottom line?What I, the patient, want is to be put on the highest efficacy, most effective, drug possible as soon as possible. There are some side-effect considerations, but what I want as a patient is to avoid brain damage. Instead, I'm turned into a sort of guinea pig to protect corporate profits.I got a bill in the mail and the total shocked me. The total for two years of treatment was approx. $136,000.00Amazing, isn't it? We live in a country where "medical bankruptcy" is a real thing. When I lived in Europe, most people did not even understand the concept -- their national health systems relieve them of that worry.Today I view medical bills with a shrug of the shoulders. Some might say that's irresponsible, but that's what life has taught me. To me those are like the prices and numbers at a car dealer -- they're meaningless numbers printed out and meant to inspire awe and to hopefully con some people into paying them if they could. Drug prices are the same thing.Too cynical? Perhaps, but that's what my experiences say they are.
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
10 months ago
I agree I am going to wait, actually started Ocrevus last April so far so good no complaints. At least insurance helps pay for it, thank God because I got a bill in the mail and the total shocked me. The total for two years of treatment was approx. $136,000.00, thankfully tricare helps and the company Ocrevus helps also. I started on Copaxone acquired lesions, then Gilyena acquired lesions, now my sister and I both are on this treatment. I pray my appointment goes well on Tuesday really need it right now, I am actually having symptoms I haven't had in years. I believe it has a lot to do with stress, thankfully contacted tricare they will still be covering us in the DHS through this shutdown. 
golgotha
golgotha replied to discussion RE:VA Representative New Orleans
10 months ago
since I have my VA appointment coming up and scared if I switch neurologists right now,You might want to wait for that. I don't know what sort of insurance you have, but some MS drugs can be expensive (e.g. Ocrevus is over $60k/yr). Since you're service-connected, you should think about using the VA system or at least having them pay for the drugs. I'm not sure how that would work, throughout my 30+ years with MS I used private health care (or none), or the VA, never mixing the two.I have nothing but good things to say about my neurologist at the VA. The problem is that the VA's scheduling system and that it's near impossible to get an appointment. The neurologist runs a private clinic, so the VA to him is only a part-time, more minor thing. Many other doctors in the VA system that I've seen can barely spell MS (it's the same in many private hospitals/clinics; MS specialists are rare).but good news is I found out that Ochsner has a unbelievable MS clinic I am going to check it out!If possible, mixing the two and having the VA pick up the cost for drugs and any equipment but using the doctors from a private MS clinic would, IMO, be about the best combination. 
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
10 months ago
It is so nice to hear that you understand the way I feel, sometimes it is so hard to relay to people just exactly what's going on. I have not found a new neurologist yet since I have my VA appointment coming up and scared if I switch neurologists right now, it will be more paperwork they need. It is quite pitful because I have been going to Tulane over 6 years since we moved back to New Orleans, the neurologist I had for 5 years was so awesome. He listened to me, I coud email him if something was wrong, etc. Unforunately he decided since my MS was progressing it would be a good idea to refer me to this doctor I have now since her specialty is MS. Well needless to say...she is never available, her nurses never get back to me if I need something. Just frustrated, but good news is I found out that Ochsner has a unbelievable MS clinic I am going to check it out! I just want to say thank you for being here for me, I truly do appreciate it!
golgotha
golgotha replied to discussion RE:VA Representative New Orleans
10 months ago
There are some similarities in our MS stories. I was also not diagnosed until I was out of the Army, but I had MS symptoms while I was in. The VA, to their credit, seems to get this dynamic.I am not currently happy at all with the neurologist I have, she does not tend to listen to anything I tell her,That cannot be comfortable.But I get it. I'm fussy with doctors. I have a background in computer science, so I thoroughly understand and can relate to geeky, bean-counting, statistician-type doctors. And I want that, the impression of technical competence. But in a neurologist I also demand some empathy and that the neurologist have some people skills.Now add to that the fact I set a third criteria of the neurologist having some experience with MS patients and I'm a fussy and picky. :)plus I am her guinea pig for the students at Tulane.Some of that is fine IMO, but too much is a distraction.Even the students noticed she does not listen, pretty freaking pitful.I know what I'd do. So have you found a new neurologist yet? :)
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
10 months ago
Thank you so much for getting back with me and providing so much valuable information! Yes my MS is service connected. Long story short I decided to leave the Coast Guard after 15 years to go back to school. Before I left I was being sent to Neurologists here in New Orleans for MRI's that were showing lesions, spinal tap was positive, and completely failed my VEP. Unforunatley the noone wanted to diagnose me, with that said the Coast Guard approved my separation without my medical paperworked signed. Went into Reserves, thankfully Commander at Naval base in Charleston researched everything for me, she did paperwork that stated I should have never been separated and diagnosed with MS. I had been showing symptoms as far back as 2007, once I was separated a neurologist in S.C. diagnosed me finally. I have an older sister that has had MS for over 20 years now, and watched my Aunt struggle with MS her entire life until she passed away in the early 90's. I know back then doctors were really not sure how to treat MS, now we have all these new therapies. I am not currently happy at all with the neurologist I have, she does not tend to listen to anything I tell her, plus I am her guinea pig for the students at Tulane. Even the students noticed she does not listen, pretty freaking pitful. Wish me luck and again thank you so very much for keeping in touch with me, it really means so much to me!
golgotha
golgotha replied to discussion RE:VA Representative New Orleans
10 months ago
I am finally schedule for my first exam with the Va on the 15th of this month, at least the ball is rolling I know better than things to move quickly!Exactly. If the VA bureaucracy is less than the Army's, then it's not by much. :)But with that said, that's the game and the VA is great for some things. Does your MS fall under the service-connected category? Are you on a DMT/DMD?The VA is great for paying for drugs and various equipment. I'm simply spoiled in comparison to private insurance.The things I see people going through to get basic coverage for private, for-profit health insurance is appalling -- I don't see why the American people put up with such abuse and not have a revolution (seriously).In comparison, the VA is stellar -- as long as you can put up with the wait times to see a doctor. :( (I've been told repeatedly that VA doctors carry a much higher patient load than regular doctors carry, with arguably more difficult patients.)
phillyirish75
phillyirish75 replied to discussion RE:VA Representative New Orleans
10 months ago
I am so sorry, I have not forgotten about getting back to you just been very stressed out lately. Especially since I will not be receiving my disability retirement check from the Coast Guard this month and my husband will not be receiving a paycheck this week. We both were in the Coast Guard and now retired, he still works for Coast Guard as a civilan for the Vessel Traffic Service. He basically makes sure ships and barges on the Mississippi River here in New Orleans do not run into each other. I truly appreciate your advice, I am finally schedule for my first exam with the Va on the 15th of this month, at least the ball is rolling I know better than things to move quickly! Have a wonderful day!
tater52403
tater52403 joined the group
10 months ago
tater52403

tater52403

Senoia, GA
  • Gender Male
  • Age 44
  • Relationship Married
  • Connection to MS
golgotha
golgotha replied to discussion RE:VA Disability Rating
11 months ago
Curious if anyone else has disability through the VA and to what percentage.Since I replied to you a year or more ago, I've learned a good bit more about this.Everyone who is service-connected with MS gets a 30% rating by default. Again, that qualifies you for voc rehab, so take advantage of that if you can.After that 30%, the VA adds on additional percentages for specific symptoms. They'll add X percent for optic neuritis, let's say, and add another Y percent for bowel issues, etc., for each specific thing MS is impacting. From my POV it's a crazy system, but it is what it is.I was re-evaluated and put at an 80% rating, which insulted me because I had a variety of issues impacting me. On the advice of my service organization, (Paralyzed Veterans of America (PVA)) that's being evaluated again.Congress has out-sourced a lot of the re-evaluation. So instead of the VA hospital system doing the evaluation, you'll likely be sent to out-sourced, private doctors to be examined. It's a crazy system that takes months.The VA system classifies MS as a "spinal cord issue" in terms of their hospital system. Obviously, the military has many disabled vets with what I'd call "traditional" spinal cord injuries, but that's where they put MS. In the VA hospital system, which I use, some appointments are done with the spinal injury clinic, in addition to appointments with neurology, optometry, etc.). That's just the way the VA hospital system works.I would strongly advise not to do requests for re-evaluation by yourself -- the VA bureaucracy is just too thick, too convoluted, and too absurd.There are many veteran's service organizations out there that specialize in that task. Though you may be able to run miles, the PVA handles MS patients because whether we like it or not, MS often has spinal issue/impacts and paralysis of some level can happen. I'm ambulatory but use the PVA just because they're eager to handle all that bureaucracy and seem to do a good job. But if you use a service org and it's not doing a good job, don't hesitate to drop them and try another.
golgotha
golgotha replied to discussion RE:VA Representative New Orleans
11 months ago
Brain cramp! :)It's not PAV, it's the Paralyzed Veterans of America (PVA). You'd think I'd get that right since that's the service org I use and strongly recommend.