Hallelu

Finally!

I got an appointment at the Cleveland Clinic MS unit!  Now I just have to get there, driving very slowly, with many stopovers, from my current location at the southernmost tip of Virginia.

The appointment coordinator actually offered me an appointment for Monday, but, uh…

Even one year ago I might have jumped into the saddle and been there tomorrow!  But now it will have to be in short hops with many rest area stops to limp around and stretch my poor hands, which have been cramping up like nobody’s business and just giving me general hell.

Last night I read about neurodegenerative diseases, cried a lot, did a bunch of research and decided that I’d better at least get a more definitive diagnosis than the one offered by my neurosurgeon, e.g., “This weakness is not from your spine.  You have some kind of neuromuscular disease.  MS, probably.  My PA will get you a referral.”  After six months, I finally got an appointment offer.  In another three months.  In Phoenix.  With a neurologist who specializes in epilepsy. Nah.

All I want is a diagnosis, and a prognosis.  I want to make sure it’s not some other process like ALS, which is also on the table because of some abnormalities seen on my last MRI but not followed up on by the surgeon: not his department.

Will someone please tell me what happened to doctors, that they quit being doctors and started being fancy technicians?

What about the time(s) over the past 10 years that I’ve complained of total exhaustion and exercise intolerance and heat intolerance to my primary doc, and been sent to cardiologists who only found mild mitral valve prolapse, and the entire issue was scuttled: The End, no further questions, Your Honor?

How about the time I complained of exhausting fatigue and was offered stimulants???  Great.  No thanks.

Or the most recent debacle where I fell down on the fucking treadmill after screaming that my legs were locking up on me (they do that if I use them much), so the cardiology techs dragged me off and threw me on the table so they could get their “post exercise” echo, later condemned as unreadable but billed to Medicare nonetheless?  Exhaustion not of cardiac origin.  And yet, you would think the cardiologist, being an M.D. and all, might have some other ideas regarding the etiology of extreme fatigue, muscle weakness and wasting, spasticity, and pain…wouldn’t you?

Granted, he did exhibit a modicum of holistic thought when he suggested my fatigue might be due to the naughty guts.  Bingo!  Yes, the guts do cause me fatigue, and I do buy that theory.  But the guts do not give me muscle wasting, spasms, weakness, etc etc etc.  They are just there to help make life miserable and to ensure that I don’t get proper nutrition.

I can’t even drink “Ensure,” because it is so full of lactose that even huge doses of lactase do not detoxify it for my enzyme-less guts.  Fuck a bunch of guts, I want to live on sweet tea and clean, cool, dry air.

I want my diagnosis, and then I want to go back to Colorado where the air is clear and cool and the nights are cold.  And when it comes winter, I’ll go back to the high desert.  And when things get worse, I’ll know what to do.

 

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22 Comments

  1. Glad you got in there! It’s not a bad place, for being a medical torture destination. I hope they get it all figured out. ❤

    I’ve got a doctor complaint… I don’t appreciate when radiologists call my insides unremarkable. How about “acceptable” or “better-than-mediocre”? Or “normal”. That seems more positive. The fact any of it still functions properly is sort of remarkable.

    Reply
    • Hahaha! “Unremarkable.” That one has always given me a chuckle. Kind of like…meh…can we run to the cafeteria now??? Nothing to see here! How bout instead: “Patient’s innards are remarkably boring!” No, that’s not right either….

      I can only hope I get somebody who knows what to do with a spinal needle, if that’s the way they choose to go. All of my lumbar vertebrae are fused from inflammation and far, far too many steroid injections. The last time I had to have spinal anesthesia, it took two anesthesiologists and finally ultrasound guidance to get the needle in. Having been a resident once myself, I know way too much about “practice, practice, practice!”

      Reply
  2. I think the crux of the matter with doctors (or anybody else for that matter) is….they just don’t give a shit.

    Reply
    • True. That’s why I’m hoping that the residents at The Cleve, which is a hot hot hot place to do your residency/fellowship, will have “fire in the belly,” e.g., give a shit. Plus which, it’s on Kara’s Recommended Medical Torture Chamber list, so that’s a huge endorsement 😂

      Reply
  3. glad to hear you got the appointment at the Cleveland Clinic. They have a great rep. Also glad you are taking your time to get there-killing yourself to get there wouldn’t do you any favors. i hope they can help you get some answers.

    Reply
    • Thanks, Kat! Yes indeed, since my legs tend to seize up after a couple hours of driving, it might just kill me (and possibly others 😯) if I tried to push it. I’m working on the Zen of Sloth!

      Reply
  4. vevo777

     /  August 12, 2016

    I believe MS burns itself out after age 60. After deciding the side f/x were worse than MS I stopped Avonex (interferon beta1a) in 2001. (Harassed by the drug co for years, warning
    my brain would atrophy 10% per annum, leaving me 15 yrs later with …what was I saying? ) Checking on my decision a couple of years ago a new Neuro wrote me saying the disease modifying MS drugs are not offered after age 60. Symptomatic relief is there for you if that were your diagnosis (note subjunctive tense use here).

    I couldn’t drive to a Doc appt 20 min away yesterday due to back spasms…couldn’t even make it downstairs to the kitchen. This is post July 28 kyphoplasty pain, and it KICKS my butt harder than MS ever has. I sympathize so much and am also here with any MS questions you may have.

    I have never had a spinal puncture or other such like in dx or tx of anything! I hope they help you without hurting you more.

    PS you no doubt already know that ALS comes in many forms from minimal to unremitting. I have a friend who came all the way back from bedridden to ALS gone. Evy MaCDonald is her name; she has written about it .

    These two conditions are nothing to be scared of in themselves for the majority of us.

    Luna my mutt would like to send Atina her favorite treats…xoxoxoxoxox from

    Your fan Vivia Boe

    Reply
  5. vevo777

     /  August 12, 2016

    Typo. “Minimal to remitting” as well as severe, same as MS but much less known

    Reply
    • Hi Vivia, I really appreciate your input and support. Kyphoplasty sounds terrible! What did they cut and paste??

      This MS dx arrives after a whole saga of getting things in order for a 2 level cervical fusion. I thought my symptoms were due to the nerve root and sympathetic nerve root/ganglia compression, which have been going on for some 30 years at least, but no. So I must emerge from the haze of denial and face this. I’ll be 63 in September, and I hope they don’t try to push any biologics on me, because like you I believe they are worse than the disease. I need to know the diagnosis mostly to prepare myself for future possibilities, as I live a rather unusual lifestyle, camping in the wilderness with my dog. My biggest fear is that my dog might be in trouble if I get into trouble! Yes, I’m crazy, but we knew that already😊.

      I’ve had spinal surgery in the past and it sucks big time. I hope your poor beat up vertebrae heal quickly (think: a year, no matter what they told you), and that you feel better than ever so you can enjoy life straight on!

      Reply
  6. Welcome to my world! No doctor has definitively given me a reason why my ankle is fucked and hurts like a bastard. 15 and counting that I have seen. Now I am with an NP that just gives me my pain meds and doesn’t really care about my pain so much.

    I am sorry that you have some neuromuscular problem. That has to be frustrating. Know I am thinking of you. xoxoxo

    Reply
    • Thank you, G. That’s fucked about your ankle. Sounds like RMS to me. From afar, without seeing you, that is. Maybe someday when they put in climate control I’ll come by and we can have coffee…

      Reply
      • what is RMS?

        Reply
        • RSD, reflex sympathetic dystrophy, regional pain syndrome, I think they have different letters for it now, like complex regional pain syndrome or something. Basically it’s when your brain and your sympathetic nervous system team up with an extremity to cause a complex of pain with heat and flushing, so you get a hot, red, exquisitely painful extremity. It can be caused by injury or invasive procedures. Mine was caused by a medication error overdose of Compazine in the hospital immediately postop after a C5-6 discectomy, and the resulting whole body rigid spasm for 8 hours till my surgeon made rounds caused traction on the cervical nerve roots resulting in the RSD (Not RMS, sorry, MS on the brain 😦 ). There is currently a lot of argument about whether this is a “real” phenomenon, even though millions of people suffer from it. Big whoop, no surprise there. Can’t image it? Doesn’t exist, despite clear physical evidence that it does. I was denied pain meds (even in 1987!), given high dose steroids that caused myelopathy, and sent back to work 120 hr/week after my 8 week sick leave was up.

          Reply
  7. Good luck! Hope you get the answers and solutions you are looking for. 🙂

    Reply
  8. God laura
    I’m sending lite and love
    Hugs and wiggles
    If you come though pa
    Yell

    Reply
  9. The Grundlands

     /  August 14, 2016

    Sending love and gentle hugs and wishing you refua shleima xo

    Reply
  10. My mother-in-law and a close friend have MS. My MIL has the progressive form. She’s a fighter, though.

    Reply
  11. Praise be indeed. I’m off to look for what happened next. Xxx

    Reply

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