Forcing neuro's hand?

[hoping]

New rheumy is getting very frustrated with my neuro care.  He is upset that I've been on long term Prednisone(various dosages, mostly 5mg in recent years) without a clear diagnosis.  He is smart, at first he tested for Whipples and Celiac with biopsies, upper GI, and lab draw.  Negative.  Thought next step was repeat lip biopsy.  Mayo gave me lip biopsy with possible SJS, but not positive SJS.  However I am still on oral Prednisone which would affect the test, and at last visit he said in notes that he wasn't thinking this was SJS.  In the meantime, 6 more wks until I go back, he wants a slow taper off the Prednisone.  Knows that when I go off Prednisone, I relapse/flare with weakness for sure.  Stated he wants to force neuro's hand to come up with something concrete.  If neuro said neuropathy, proven on EMG or lesion on spinal cord, proven on MRI, then rheumy would probably run with SJS diagnosis afterall, but without the positive test, everyone's holding off.  Guess it's just a waiting game until it hits the point where I can't walk again.  Been there done that, lets do it again.

Neuro and SJS symptoms are all rearing up worse now, just from 15mg to 12.25mg drop.  Eyes once again get stabby feeling from inside out, and dry/sting is so bad.  My Rose Bengal was slightly positive and Shirmers was get this 20 (can't imagine what you do at 2??)  Restasis helps some, genteal some, but by evening it's downright awful.  As is the neuropathic pain.  Like a painful pins and needles up and down the spine and across the rear at all times and awful burning in arms, rear.  The only way to attempt sleep now is with a bed full of cold packs, it numbs the pain for a while.  Often the reflux wakes me up a couple hours later, even with Nexium 40mg twice a day.  Eventually, I take Valium for jerking muscle spasms (related to lesion of my spinal cord), and head to the freezer and reload with more cold on the rear and arms.  I feel like my sleep is so fragmented now, that it's useless to even get a nap in.  I go around with my eyes drooping and looking at TV for distraction, reading more difficult- because it hurts to hold book.

Knee, elbow and finger joints are now killing me and cannot get off the walker for anything.  I try to do basic leg lifts, core exercises, but even so my strength is slowing fading.  I can no longer feel the bottoms of my feet and fingertips.  My memory for word recall is shot, but I know its from lack of sleep, I haven't really slept well, even with CPAP in 3 years.  Still hoping for answers to come soon, but soon is a lost word in the medical world.  Was to see neuro this week, but called to say he needed to reschedule, so how bout in another month?  I am on the verge of checking out Hopkins for a final vote on what the he** this is.  If someone would be brave enough to go out on a limb and do that maybe I could finally be treated and get some tiny bit of relief.

Has anyone tried Elavil for sleep/pain and has it helped or does it cause too much dry mouth?

Hurting and can't even cry about it,
When will someone listen to me, actually listen?  I do know this body better than they do! 

Karin

[Scottietottie]

Hi Karin 

I'm glad your rheumy is being pro-active but it sounds awful having to get so bad before something is done/dxd. Are you sure you don't have an eye infection of some kind, or sensitivity to the drops you use? I don't know what a 'normal' Schirmer's test would score but I was under the impression that it had to be 10 or less to be considered dry. My eyes scored a 6 and a 1 and then went up to a 12 and a 6 after Plaquenil and fish oil supplements.

Do you have the head end of your bed raised? My doc told me to stick a couple of bricks under the legs so that my body would slope down the way when I was sleeping and that would make reflux less likely.

I wish I could advise about pain and sleep but I'm not a great sleeper myself.

I hope you get some answers soon.

Take care - Scottie 

[Chickpea]

Hi Karin

Wouldn't it be wonderful if just once one of us could find a doctor who actually listened to us, as you suggest?  The idea that they might acknowledge that we know our bodies better than they do is pretty revolutionary, considering how most of us are treated!

It sounds as though you're stuck in a funny sort of limboland: a place where some symptoms are treated and others aren't; where a diagnosis is hinted at but not followed through.  No wonder you feel so let down.

Like you, I have mostly neuro symptoms and like you, my mobility and daily life have both been completely altered in a very short time.  I'm also on Prednisolone - cutting down slowly from 40mg a day and now on 25/20 - as well as Plaquenil and CellCept.  And lots of pain meds.  Have you actually been given Plaquenil or any other DMARD?  What about CellCept or one of the other immunosuppressants?  If the rheumy/neuro combination aren't prepared to treat you, will they at least get your analgesia sorted?  Maybe refer you to a pain clinic?

As you say, now might be a good time to get in touch with the wonderful Dr Birnbaum at Johns Hopkins. 

Let us know how things go with you.  And I hope you get a better night's sleep tonight!

Thinking of you - Chickpea