Hi all. Been awhile, but here I am again.
I saw my rheumatologist yesterday for my 3 mth Lupus/fibro/etc visit. My pain and problems ahve been soooo bad lately that I planned to ask her for prednisone-which I hate having to take.
I didn't even have to ask her for it. She beat me to it, once she heard all the pain I am in and everything else. She said she knew when she walked in the room, that things weren't right. After going to her about 15 years...she knows me well by now. lol
It all just started getting real bad again about 2 weeks ago.
So anyway...after I went over everything that's been going on:
numbness/tingling...esp numb feet/toes
incontinence issues getting worse
probs walking, dizziness, total fatigue,
the buzzing/vibrating sensations I have been getting in my groin/legs/now feet and torso too
vision/eye issues-blurriness, double vision, colors seem washed out-I even failed my field of vision test recently-which I then had to see the retinal specialist because they thought it may be plaquenil toxicity-thank God, there isn't that. But yet, still having the eye issues.
I get sharp eye pain in left eye now-which then starts a headache from my eye to the back of my head-like a line from the eye, back. Yet my contacts were changed to a bit higher RX and still, these probs worsen.
Stiffness all over-more than the morning stiffness I have from osteoarthritis because it feels like everything is stiff-not just joints.
My hands and feet cramp up a lot-can't even slice up a roast-my hand will cramp and be all curled up for a few min after.
Simple tasks cause me to feel like I just did 50x's the work! Like folding laundry, brushing my hair-which is long, anything repetitive especially. It wipes me out and my arms hurt so badly!
My muscles and bones hurt so bad-hard to walk sometimes because my feet hurt so much
I feel like my upper arm muscles are being twisted and they hurt so bad to even be touched.
Plus, the bones of my upper arms hurt so bad too-at least it FEELS like its deep bone pain!
Insomnia is terrible. really bad.
The shock-like sensations down my entire arms, into my fingers, that I've had for years now when I yawn, breathe deep and now, when I move my head certain ways-a neuro once told me it was an atypical form of Lhermitte's.
I have an intention tremor in my hands that my neuro dxd about 5 years back, that gets worse at times.
Absentmindedness is worse again, twisting up words, sometimes making up my own words
Walking can be so painful and I wind up becoming very stiff while walking and walk oddly to compensate. My daughter even commented on that in the store yesterday.
---- as well as the past brain MRIs showing the white matter lesions...she said I need to see my neuro again asap, because of the ongoing probs and symptoms and new issues as well.
She said "Its time to talk to him seriously about the possibility of MS."
My face apparently showed my reaction, because she said... "I know, I know, its scary...but its a strong possibility, considering everything, and needs further investigation and discussion with Dr S."
So...it'll be another brain MRI to see if there's any changes with the lesions and she wants him to do a whole new neuro eval.
She also did the usual labs, including muscle enzymes, because my muscles hurt me sooo bad I can't even press certain areas myself without near tears from pain. Especially my upper arms. It hurts if someone bumps me, pokes me, etc... Just the BP cuff on my arm hurt so bad.
Anyway, its times like this I just want to curl into a ball, cry and ask Him..."Can I please be done now, God?"
But...onward again, I guess. I told hubby what she said and he said "Well, then make that appointment and we go from there."
And that's all I can do now. Except, I can't do it right now because hubby is having a prostate biopsy done in the morn and it may be cancer. I pray not. It just never ends lately.
But, I will make the call and set up an appointment at least-hopefully I can see him sooner than later, meaning hubby's biopsy will be benign and all will be well there for him.
Enough cancer scares to last a while now.
I had surgery in July because they thought a lg complex lesion found on my right ovary might be ovarian cancer, because of the type of cyst it was showing to be-complex, with septations, along with an elevated OVCA marker result-but thank God, it was benign and all I lost was a tube and an ovary! lol At the same time, they found a nodule on my mammogram that needed further investigation but then couldn't be found on ultrasound to biopsy that...so now re-do in Dec! UGH!! Its enough to make you scream!
But anyway, that's that till I know more I guess. Just sharing and venting and wandering around here again.
Hope all are well and feeling good these days.
*hugs*
Cathy
I saw my rheumatologist yesterday for my 3 mth Lupus/fibro/etc visit. My pain and problems ahve been soooo bad lately that I planned to ask her for prednisone-which I hate having to take.
I didn't even have to ask her for it. She beat me to it, once she heard all the pain I am in and everything else. She said she knew when she walked in the room, that things weren't right. After going to her about 15 years...she knows me well by now. lol
It all just started getting real bad again about 2 weeks ago.
So anyway...after I went over everything that's been going on:
numbness/tingling...esp numb feet/toes
incontinence issues getting worse
probs walking, dizziness, total fatigue,
the buzzing/vibrating sensations I have been getting in my groin/legs/now feet and torso too
vision/eye issues-blurriness, double vision, colors seem washed out-I even failed my field of vision test recently-which I then had to see the retinal specialist because they thought it may be plaquenil toxicity-thank God, there isn't that. But yet, still having the eye issues.
I get sharp eye pain in left eye now-which then starts a headache from my eye to the back of my head-like a line from the eye, back. Yet my contacts were changed to a bit higher RX and still, these probs worsen.
Stiffness all over-more than the morning stiffness I have from osteoarthritis because it feels like everything is stiff-not just joints.
My hands and feet cramp up a lot-can't even slice up a roast-my hand will cramp and be all curled up for a few min after.
Simple tasks cause me to feel like I just did 50x's the work! Like folding laundry, brushing my hair-which is long, anything repetitive especially. It wipes me out and my arms hurt so badly!
My muscles and bones hurt so bad-hard to walk sometimes because my feet hurt so much
I feel like my upper arm muscles are being twisted and they hurt so bad to even be touched.
Plus, the bones of my upper arms hurt so bad too-at least it FEELS like its deep bone pain!
Insomnia is terrible. really bad.
The shock-like sensations down my entire arms, into my fingers, that I've had for years now when I yawn, breathe deep and now, when I move my head certain ways-a neuro once told me it was an atypical form of Lhermitte's.
I have an intention tremor in my hands that my neuro dxd about 5 years back, that gets worse at times.
Absentmindedness is worse again, twisting up words, sometimes making up my own words
Walking can be so painful and I wind up becoming very stiff while walking and walk oddly to compensate. My daughter even commented on that in the store yesterday.
---- as well as the past brain MRIs showing the white matter lesions...she said I need to see my neuro again asap, because of the ongoing probs and symptoms and new issues as well.
She said "Its time to talk to him seriously about the possibility of MS."
My face apparently showed my reaction, because she said... "I know, I know, its scary...but its a strong possibility, considering everything, and needs further investigation and discussion with Dr S."
So...it'll be another brain MRI to see if there's any changes with the lesions and she wants him to do a whole new neuro eval.
She also did the usual labs, including muscle enzymes, because my muscles hurt me sooo bad I can't even press certain areas myself without near tears from pain. Especially my upper arms. It hurts if someone bumps me, pokes me, etc... Just the BP cuff on my arm hurt so bad.
Anyway, its times like this I just want to curl into a ball, cry and ask Him..."Can I please be done now, God?"
But...onward again, I guess. I told hubby what she said and he said "Well, then make that appointment and we go from there."
And that's all I can do now. Except, I can't do it right now because hubby is having a prostate biopsy done in the morn and it may be cancer. I pray not. It just never ends lately.
But, I will make the call and set up an appointment at least-hopefully I can see him sooner than later, meaning hubby's biopsy will be benign and all will be well there for him.
Enough cancer scares to last a while now.I had surgery in July because they thought a lg complex lesion found on my right ovary might be ovarian cancer, because of the type of cyst it was showing to be-complex, with septations, along with an elevated OVCA marker result-but thank God, it was benign and all I lost was a tube and an ovary! lol At the same time, they found a nodule on my mammogram that needed further investigation but then couldn't be found on ultrasound to biopsy that...so now re-do in Dec! UGH!! Its enough to make you scream!
But anyway, that's that till I know more I guess. Just sharing and venting and wandering around here again.
Hope all are well and feeling good these days.
*hugs*
Cathy
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