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View Diary: Update My HCR letter to Pres. Obama may be going to the White House tomorrow! (140 comments)

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  •  So sorry to hijack your diary with my comments (4+ / 0-)

    below (above?) about the rehab facility, allie. I was just getting ready to laud you profusely for getting your issue heard by people who matter in the HCR debate when I read what was going on with Aji. I am still so furious and angry, I cannot sit by and not mention it whenever I hear of someone getting ready to get into a similar situation.

    Being a native of DC and the daughter and wife of Fed Gubment workers, I know how hard it is for them to get their issues attended to and you would think they should have a more direct channel to those above to get attention on issues related to their job. That you have gotten your very poignant letter all the way to the President is fantastic!!!!!

    I am also a neuropsychologist and I know of the issues of Multiple Sclerosis. That you were able to get the strength and stamina up to make the effort to write that letter as well as continue to be involved with keeping attention on the crisis in Haiti is a terrific accomplishment!

    If I may ask, are you on any of the interferon treatments or immunomodulators? Is this what your insurance is bucking paying for? I have a friend who has MS and he has taken Avonex which has helped him to a fairly good degree.

    The beatings will continue until morale improves. -8.50, -6.92

    by ferallike on Wed Feb 24, 2010 at 12:48:59 PM PST

    [ Parent ]

    •  Thank you (6+ / 0-)

      and you did not hijack. Your comments are welcome.  
      Yes I am on Avonex ( I still can't spell it) And that is one of the medicines that I have to get a reauthorization every 3 months.  And they usually take at least a month to get it.  That really sucks because as you probably know the side effects can be bad and breaks in taking it makes them worse. There were times I would have to take off from work and go to my doctors office watch them fax the form to the pharmacy and have the pharmacy on the phone while they did it.  It is not easy coordinating it.  Sometimes I would take off and have one place on my cell phone another on my home phone and have them call the other place with their phone.  Sorry for this long explanation.
      The medicine that CA insurance companies can't deny me is Provigil. Which I needed for ms fatigue.  I don't even take it anymore.  I take ritalin but just a couple days ago switched to Adderall.  My insurance won't cover the Adderall either so I paid for it and if it works much better than the ritelin then I will fight for it.  
      You really should be in good shape to deal with insurance companies.  They are truly horrible.
      Thank yo for your comment and sharing what you went through.  I am just sorry you had to go through it.

      •  Not a long explanation at all! (3+ / 0-)

        This is very important information that we all need to know to keep fighting for health care for all. That you have to go through such a nightmare to be able to stay on these meds is criminal. Those meds are vital to reducing the relapses and halting/ slowing the progression toward becoming disabled. Since this disease damages the myelin that surrounds the axons of brain and spinal cord neurons, any medications that slow the progression of the damage is life sustaining and allows you to stay independent far longer than without them. It makes me insane with anger that you have to struggle so much to keep getting this med.

        And anything that can stave off having to take methylprednisolone aka Medrol is a Godsend in and of itself. I have asthma and have had to take Medrol in the hospital and prednisone when my attacks haven't been so bad as to hospitalize me. They make me crazy and I blow up like the Michelin tire man.

        I also know about Ritalin as I have AD/HD inattentive type only so I'm familiar with the attention issues and all the crap that comes from not being able to keep up with everything. I wasn't diagnosed until I was 28 (inattentive type in girls/women is very difficult to diagnose as the symptoms aren't as pronounced and evident) and being able to have full attention was like someone had breathed new life in me. Knowing that you struggle with that in addition to everything else just breaks my heart.

        Has your MS been diagnosed as Progressive MS or Relapsing-Remitting MS?

        The beatings will continue until morale improves. -8.50, -6.92

        by ferallike on Wed Feb 24, 2010 at 01:27:06 PM PST

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        •  I think it is (5+ / 0-)

          secondary relapsing-remitting ms.  I still have episodes but I also have progression.  Like I did not know that I had optic neuritis.  I knew I had really bad diplopia at one time and it comes and goes but my vision is not the same since I had it.  I just went to the eye doctor and she made an appointment for me to come back because I have optic neuritis now.  I  need glasses to which I can't afford.  I am getting my first official long term disability check at the end of the month.  I was planning on getting glasses.  I just officially quite my job when I was approved for early retirement disability but they are doing paperwork and I won't get benefits through retirement until June or so.  So I got a bill for health insurance from my job and it is over $1200. It did not explain why it is that amount.  I was paying 643 (not including dental) then it went to $743 last month.  So I am not sure how 1200 something is for 3 months. I will call them tomorrow.  So I can't get glasses yet.

          You know I did not have any cognitive problems until my first episode of double vision so bad that I really could not see.  Anyway that was when I was given a def dx of ms.  My mri went from 3 small scar on my brain before the double vision to to many to count after the double vision.  I change neuros but my neuro at the time said I had progressive ms.  But I like the one I have now she is excellent the other one was good to but the one I have now is one of the best.  But after that episode I have my cognitive problems started and continue. They offered me Aricept but my insurance doesn't cover it and I did not want to be dependent on samples my neuro's office was kind enough to offer.  
          It is always nice when someone understands. Thank you so much for taking the time.
          You know BFskinner is going to write a diary Sunday in a new seriouson kos.  I am really looking forward to it.

          •  Kosability is a terrific concept for a diary. (3+ / 0-)

            I commented on that one and offered to write a diary in a few months on AD/HD since it is often very misunderstood. As a neuropsychologist, I have the opportunity to understand it as a psychologist and as as someone who has it. KellyRN2 asked me to join in to comment as I can offer some explanations of certain disabilities and diagnoses. I will do my best as much as I can as a neuropsychologist. Often the behavioral, cognitive and emotional complications from diseases and genetic/ medical conditions are not fully explained by MDs (other than psychiatrists) as this is really the arena of psychiatrists and neuropsychologists. And especially in your case, a good neurologist who can keep you well informed of the emotional issues is worth their weight in gold.

            The optical issues are very concerning especially the pain from the optic neuritis and the diplopia. I would assume many of the lesions you have are in the area of the occipital lobe and may be beginning to or already affecting the optic nerve. This makes getting the Avonex critical to keeping your vision as long as possible.

            So if I may speak frankly here.....
            if you haven't already, you might want to get in touch with a group like The National MS Society and see about qualifying for financial assistance. They may be able to help with getting glasses and other motility support so you can "stay in the game." They can also help you find other sources that can help you. At this point, you may not qualify until you're on full disability but it's worth it to start the process ahead of time.

            Your personal financial resources are likely going to be a big limitation with getting all the supplies and assistance mechanisms that will be needed as this progresses. But there are resources available to help you with financial assistance. They may also be able to help with the glasses or tell you where to go to get financial help with getting them. On the page I linked to above they say

            Who Can Be Served?

            Anyone with a confirmed diagnosis of MS (or related disorder*) who can demonstrate true financial need associated with the effects of the disorder is eligible for consideration. Since resources are limited, the National MS Society may not be able to fulfill all requests or cover all expenses related to a needed service or item. However, a consistent application process and the thorough evaluation of each application will help ensure support for those whose needs are the greatest and where support can be most effectively leveraged. When we are not able to fund specific needs through our own program resources, we can provide information and resources to help identify alternative solutions.

            I don't have a lot of experience with MS as it is limited to what I know of my friend, Chris, who has had remarkably infrequent attacks, and what I've learned of it as a student. But because of the cognitive issues and the focusing problems, it may be difficult to navigate around some of this. I am very good at research and I can help if you need someone to work with in locating resources for you.  You can go through my screen name to get my email to contact me if you need help with this.

            Is your daughter or another family member available to help you with providing personal information? It would be helpful to have someone you can trust who can double check these organizations to make sure they are for real and there's no chance of you getting into any scams. These scams run rampant and I have a horror story of one that my friend got screwed by regarding applying for assistance for her daughter who has Down's Syndrome. Someone close to you, like your daughter, who can double check applications with your financial info is crucial especially if you're in the grips of an attack to make sure there's no delay in getting any financial assistance with stuff you'll need.

            And one last thing, until you get on full SSDI disability and Medicare you might want to reconsider taking the Aricept that your neurologist offers. Aricept can help considerably with the slowing the damage to cognitive functioning in some people with MS. Your neurologist can very likely keep you supplied with it as they get these samples for free.

            The beatings will continue until morale improves. -8.50, -6.92

            by ferallike on Wed Feb 24, 2010 at 03:41:06 PM PST

            [ Parent ]

            •  I can't tell you how much (2+ / 0-)
              Recommended by:
              ferallike, no way lack of brain

              I appreciate talking with you.  My  neuropsychologist is wonderful also. The thing is private insurance only covers seeing her for testing not treatment/therapy.  

              Thank you for your amazingly kind offer I may take you up on.  I look forward to your diary.
              I am lucky because the job I settled on when i was dx'd with ms was Medi-Cal (ca's medicaid) intake.  The last couple years I did outreach intake.  So I know a decent amount about the system.  I have already been approved for long term disability. I had private/not great insurance I got through my job.  I have also been approved for early disability retirement.  My approvals have been pretty quick.

              Social security is pending.  I have mixed feelings because if I desperately want Medicare. Medicare covers treatment with a neuropsychologist.  
              My Neurologist is actually recommended my the nmss.org. She is wonderful.  But I still think I may be able to work part time.  So once I know what my income will be, I have been approved but they haven't figured out the exact amount and I know that my ltd insurance will take any money I get from social security and early retirement disability. I am not sure of the details yet.
              As far as getting stuff through ms society I am not there yet, hopefully won't get there.  I would rather wait a couple months for glasses then get help before I absolutely need it.

              Again, I can't thank you enough for your time.  

              •  I'm glad to hear you're already in the know (2+ / 0-)
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                allie123, no way lack of brain

                about what is available for you. That's a big relief. I would personally love to see on Medicare if possible so you can stay in close contact and be monitored by your neurologist. This is one dx that can be slowed dramatically by proper care by someone who can see you often enough to monitor any changes.

                Please keep us informed of what is going on with you and the SSDI. I'm concerned but less worried knowing that you have resources already at hand.

                The beatings will continue until morale improves. -8.50, -6.92

                by ferallike on Wed Feb 24, 2010 at 05:02:16 PM PST

                [ Parent ]

                •  Sorry, (2+ / 0-)
                  Recommended by:
                  ferallike, no way lack of brain

                  I meant to say neuropsycholigist isn't covered. My regular neurologist is covered and they are really great, especially my nurse practitioner at my neuro's office.  They even have a social worker there.  I participated in 2 studies with them so I go to know them well.  I am so grateful for my nurse practitioner she has really helped me and my friend has ms an he goes to the same office and we both love her.

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