FOR MEMORYLANE AND CACTUSLIL :-)

Discussion in 'Fibromyalgia Main Forum' started by Seagull, Jun 14, 2003.

  1. Seagull

    Seagull New Member

    Didn't know if you would see the other post, so copied my response here ...

    I am finally able to respond -- 06/12/03 10:15 PM

    Sorry I haven’t felt like posting much lately, though I have been lurking as much as possible – I have had some real problems getting used to the right combination and dosage of meds to control the Meniere’s symptoms. And, boy, talk about headaches – I am averaging 4 to 5 bad ones per week. My doc is monitoring them, thinking they must be tied into one of the meds, but I am stuck with them for now if I want to avoid those awful vertigo attacks. At least, the massage therapy is helping to keep the intensity down some.

    Lil – I am so sorry that your health has taken a turn for the worse, but glad that you have a sympathetic and attentive doctor. It’s good he was able to shield you a little from your toxic relatives while you were in the hospital.

    How great that the insurance approved your doc’s prescrip for a power chair, but I don’t understand why your provider has not made arrangements to deliver it to you if you have no other way of going to his place to pick it up. It has to be fitted to you before you can take delivery of it – the fitting can take up to an hour to make sure the chair is both as comfortable as possible and functions in the best way needed for you to be able to properly handle it. He can do the fitting at your home, if needed. My scooter fitting took about 45 minutes and, while doing it, the provider found a couple of things that needed replacing. He called the manufacturer right then and they overnighted the items so that I could take delivery the next day. I would call Medicaid and have them put pressure on your provider or ask them for a new provider who is more customer-service oriented (and maybe even a little closer to you).

    Thanks for your notes on filling out the CFS/FMS Residual Function questionnaire. Because I do not have CFS (although I do have chronic fatigue as a symptom), I thought about ignoring the CFS questions and concentrating on the FMS questions, customizing and expounding on them for CMP also. If I do end up in front of another judge, believe you me I know to show up looking like I just rolled out of bed! I haven’t worn makeup or even a bra in ages, either, and the bags under my eyes testify to my severe sleep deprivation problem.

    Hey, after all the years of working and paying into the System, you certainly are entitled to SSI and/or SSD because you qualify. I sure won’t feel ashamed if and when I get my approval!

    And, thanks so much for the kind words about my posts – I try to be as helpful and encouraging as I can, but sometimes I feel so foggy-headed and all I can do is read a few of the posts. I find your posts very encouraging, as well. BTW, I did get an attorney that is local to me – he was recommended by a counselor in the TX Rehab Commission office, after she told me that I was unemployable! :)


    Hi, Lane – Yeah, the storms are here now – we are really getting pounded!

    As I explained above, getting used to these meds has really taken their toll, but I think they’ve finally found the right dosages to control the vertigo, although I am left with bad headaches. It’s always something, isn’t it? :-}

    About your notes on that form – I did not know there does not have to be an actual diagnosis of the CFS. I do have some of the symptoms, but not all of them, although my docs have all said in the records that I have chronic fatigue. I appreciate your mentioning this and I am going to look it over closely to see how best to use it.

    Yours and Lil’s research abilities are incredible and have been so helpful in my application process.

    I am currently recreating as much as I can remember of what the judge said at the previous hearing for my attorney, who is working on a listing of all the SSRs that were ignored at that previous hearing. The judge simply stated that I was “not a credible witness”, mainly because I had made the mistake of dressing professionally – according to my former lawyer! I remember that my daughter had to help me dress that morning because I could not do the zip or buttons in my outfit.

    I do have Congressman Joe Barton involved on my recon at this point. He handles Arlington. His office called the Arlington SSA office to speed up the processing of my request for copies of my case files and that call created a “congressional inquiry” red flag status on my case. Now, the same SSA office cannot do enough for me as far as keeping me informed of what is going on. Hopefully, Granger’s office will do the same for you. :)

    My pcp is Dr. Naberhaus in Arlington, but he is really hard to get into as a new patient. The only way I got into his care so quick is because I was a former patient of his under a previous insurance carrier for many years and he remembered me. He does believe that CFS, FMS, and CMP all exist and has been doing quite a bit of research about each condition on his own for the last five years. He has read Devin’s book and listens and asks the right questions. He is also very open-minded to new therapies to try to help with all my symptoms. The first thing he did was to refer me for non-drug pain management therapy with my now weekly chiro and massage therapist. (All my former pcp did was to keep throwing more meds at me, none of which worked.) I am so glad to have him. Unfortunately, some of his office staff are not the most competent or caring, but I can put up with them because of he is such a great doctor. He even sets appointments for me to come in for a visit if I have a letter I need from him so that he does not have to charge me extra for that letter. So, I only pay my co-pay. :)

    I wish us both the best on our cases – heaven knows we deserve it! :-D

    You guys take care and have a stress free day. :)

  2. Applyn59

    Applyn59 New Member

  3. Seagull

    Seagull New Member

    for Lane and CactusLil. :)
  4. Cactuslil

    Cactuslil New Member

    this post and responses.....first, to the gal w/the congressional pull behind her...never fear...you should have it made!!

    Saw my handsome south-of-the border (boy would I like a dance with him of that tune!) doc today and we discussed the intensity of the amnesia I had and he confirmed there was no pathology I did not know about on the records he confirmed.

    Right now I am trying to keep it by the books as the nerve entrapment is trying to go above the midline and I cannot let that happen. Old "bulls" die hard! But I can tell you from here out I WILL mitigate my losses!

    I have been listening to the 'debates" and "blah-de-blah et al" concerning prescrip. coverages for Medicare receips. I would pay to listen to the "thinking on the hill"...hey, that sounds like a song there! Love CactusLil'
  5. MemoryLane

    MemoryLane Member

    I am sorry about your headaches, my son has labrynthitis and has similar symptoms to Meniere's, though not as bad.

    So, thank you for taking the time to post and to bump the information for us. I don't have insurance right now anyway, so I won't even try with Dr. Naberhaus. I like my CFS doctor, but he has too many patients and it's starting to make him forgetful - he's worse than me! ~{:eek:)

    Right now, while I am in the JPS Health System, I'll tolerate my new PCP who most definitely does not believe in CFS or FMS. But I have a Psych doctor I like and the care has been good. Everyone is very nice and caring, despite the fact we are all "indigent", they don't treat us like that. The only problem area is the Pharmacy system - it is a ridiculus set-up. You can get a new prescription filled in a few hours, but refills take 3-5 business days (?). I just found out today that they lost my new prescriptions for my Klonopin and Neurontin, both of which were upped in dosage recently and of which I only had enough to last until the refills were in. So, I am going to have to go down tomorrow and sit and wait to talk to my Psych's nurse to straighten it out. I hope I don't start having seizures due to the stress and withdrawal of both my anti-convulsants.

    I am due to start physical therapy at the end of the month - that was my doctor's answer to CFS - exercise! But, it will be good for my arthritis and degenerative spine, so I guess it's a positive thing.

    I am glad you have a red flag now, I hope I get the same. Good luck to you also - yes, we both deserve a turn in our favor.

    Wishing us all well,

    Lane

  6. Seagull

    Seagull New Member

    Amnesia and nerve entrapment both. I can relate to the nerve entrapment problem, but have never had to deal with amnesia. I am glad you have a concerned (and hopefully competent) doctor.

    I do hope that congressional red flag is of significant help to my case -- I will sure let you know how it comes out. Take care. :)
  7. Seagull

    Seagull New Member

    >> I am sorry about your headaches, my son has labrynthitis and has similar symptoms to Meniere's, though not as bad. <<

    I hope your son's condition improves -- although I admit I know nothing about his condition. I am glad to report that my massage therapist is great at releasing the trigger points in my scalp area and that does help relieve the headaches for several hours.

    >> So, thank you for taking the time to post and to bump the information for us. I don't have insurance right now anyway, so I won't even try with Dr. Naberhaus. I like my CFS doctor, but he has too many patients and it's starting to make him forgetful - he's worse than me! ~{:eek:) <<

    Naberhaus is busy like that, too, so I do make lists to take with me and give him a copy for the records file. He really appreciates it because then he can deal with the serious problems at the appointment and review the more minor symptoms or problems closer on his own time and then get back with me.

    >> But I have a Psych doctor I like and the care has been good. <<

    Would you mind sharing his name? And, does he understand and believe in or treat FMS and CFS? It would be nice to have a name to fall back on if SSA decides I need to be seen by a shrink. :)

    >> I am due to start physical therapy at the end of the month - that was my doctor's answer to CFS - exercise! But, it will be good for my arthritis and degenerative spine, so I guess it's a positive thing. <<

    My former pcp tried to send me to a PT, who knew nothing about treating FMS or CMP, instead of the chiro I had found who was experienced in both. I interviewed the PT by phone first and when she talked about my needing to "work out 5 days a week with muscle strengthening exercises and light weights" and that she would "have me back to work in no time!", I knew she was not the right one for me and thanked her and hung up! I ended up having to change pcps to get the referral I needed to the chiro I have been seeing weekly for the last 11 months -- with good results, I might add. :) I do not have arthritis, though, so do not know how PT will affect you, but hope it helps you feel better. :)

    >> I am glad you have a red flag now, I hope I get the same. Good luck to you also - yes, we both deserve a turn in our favor. <<

    Yes, the red flag came as a surprise to me, but it has been real helpful so far. :)

    Take care. :)