Rant, Vent, and Solumedrol

Susan:
Warning: This is a long rant, but I really need it right now.

Things had been going so good right up until Saturday night. My migraines have been mild & infrequent of late, but Saturday night my right eye became very light sensitive & I started to notice some blurriness. I figured I might be on the verge of a migraine, but the pain never came. Sunday, I had to start wearing my sunglasses & even then I was blinking more on my right eye. Still no pain. Monday - I woke up with 3 fingertips being numb along with everything. That blew it! I knew I had to see Doc Mike, but the only person I could see in the office was the PA. She sent me on a semi-wild goose chase of seeing an
eye doctor on Tuesday afternoon. He wasn't sure what it was - my right eye was definitely blurry - 20/100 with glases - while the left was normal. He did a vision field check - also normal - but said that the little bit of optic nerve he could see just didn't look right. He sent me straight over to Dr Goldstein, my neuro, who said that this seems to be optic neuritis again. I had 3 choices... high dose oral prednisone, 5 days of 2 shots per day of steroids and then prednisone taper, or 3 days of IV steroids and then prednisone taper. I did the oral prednisone last year & it took 9 months to completely recover my vision in my right eye. I'd read somewhere that they'd had better luck with the IV treatment, so after asking a couple of questions I opted for the IV of Solumedrol. So he took me right down to the ER and they set me up with 1g of Solumedrol in about a pint of saline. I have to go back & do this again this morning & tomorrow morning. It takes about an hour and it tastes absolutely awful. There's also the possibility that this whole treatment may set off my migraines again. At the very least, I'm going to be jumpy, moody, and sleepless.

I do have to say that Dr G is very good to me. I have to see him after my treatment this morning & he promised me a "bag of goodies" for my migraines. He also told me that if I was in any pain too great for me to handle at home that he'd give me a shot in the office or authorize an ER visit with specific instructions on what they are to give me. I'm sure I'm going to have to see Doc Mike somewhere in all this too, but I feel better knowing that they're really treating it early this time instead of waiting 3 weeks for a diagnosis.
:-)

Well, since it's still before 4am & I'm definitely awake (ha, ha) I think I'm going to see if I can get on the 'Net & find out more about Solumedrol. If anyone here knows anything about this, could you write to me? Thanks for listening. It helps just knowing I have a place to vent. Now... what will my boss say when I have to cut out from work for my treatments?

Aisha:
Re: Rant, Vent, and Solumedrol...

Dear Susan,

"but Saturday night my right eye became very light sensitive & I started to notice some blurriness. I figured I might be on the verge of a migraine, but the pain never came."
First thing - I have been told by my neuro (who is one of my saviours) that you do not have to have a headache to have a migraine! Strange as that sounds!

"Sunday, I had to start wearing my sunglasses & even then I was blinking more on my right eye. Still no pain. Monday - I woke up with 3 fingertips being numb along with everything. "

My advice would be to get yourself to a neurologist. I have seen Opthalmics and they say that my eyes are perfect - that it is the disease causing the
problems....so perhaps you have some neurological problems causing this to happen. So please see a neurologist.

"but said that the little bit of optic nerve he could see just didn't look right. He sent me straight over to Dr Goldstone, my neuro, who said that this seems to be optic neuritis again."

Have you ever been tested for sarcoidosis? This is exactly what happens to me. I ask as it is often misdiagnosed. I am putting together a page for
neurosarcoid, here is the list of "normal" systems. If you need more info just ask me (aisha@... ) Other symptoms of sarcoidosis and neurosarcoidosis include:-

Ataxia (poor coordination of movement and speech) Breathing difficulties or coughing Concentration and memory loss Diabetes insipidus (excessive thirst/high urine output)
Dizziness
Dry mouth
Enlarged lymph glands (armpits)
Enlarged or painful liver
Enlarged or painful spleen
Epilepsy
Excessive fatigue
Eye burning, itching and discharge
Facial numbness
Facial pain
Facial palsies (twitches and spasms)
Fluid retention
Glaucoma
Granulomas (small nodule like growth)
Hair loss, and sensitivity when touched
Hormonal changes and menstrual problems for women
Hypersensitivity to sight, sound, touch, taste and smell.
Hypersensitivity to temperature changes
Hypopituitarism (Pressure from a granuloma on the pituitary gland causing
pituitary
hormone hypersecretion.)
Iron deficiency
Ischaemic attacks (stroke like/blackout/fainting/shifts)
Joint pain
Loss of sensory abilities: vision, hearing, taste, touch or smell.
Low grade fever
Meningitis (inflammation)
Migraine and headaches
Muscle weakness and pain
Neuralgia (nerve pain)
Night Sweats
Numbness
Optic neuritis (vision-impairing inflammation of the optic nerve)
Palatal myoclonus (see link)
Palpitations
Paralysis
Rashes
Reflux (acid indigestion)
Seizures or fits
Sensitive scalp
Skin Lesions (open wounds)
Sore throat
Speech impairment
Strokes
Swelling
Tremors
Vasculitis (inflammation in the arteries)
Vertigo (moving sensations even when still)
Weight Gain (rapid)
Weight Loss (rapid)

I have had the IV of steroids but I had methyl prednisolone. It was great,
but like any steroid, that withdrawal is sudden and nasty. Expect to be
flattened like being hit by a freight train for about a week.

Good luck with it sweetie.
with love

Susan:

Seems like they've tested me for everything, but no one ever told me there might be a relation between optic neuritis & sarcoidosis. They've all thought MS and that ugly word is raising it's head yet again in their minds. I've had plenty of ataxia with my migraines & facial migraines. Numbness comes & goes on my right hand - but it usually goes away in less than 24 hrs. They've said all of this could be MS or just migraines. Kinda confusing, but they're all rooting that it's just migraines & that the o.n. is a fluke. (Personally, my thought is that it's related to infections I've had
since both episodes happened about 2 weeks after a bad strep or sinus infection.)
What tests do they do for sarcoidosis? I've had several head & spine MRI's - no lesions seen. I've had a spinal tap that was all negative for everything they tested for. These are the "gold standards" for MS & I've come up negative so far, but they've told me that it's possible that I'm very early stage and it's just not showing up yet - give it 5 yrs. Well, it's just been a little over a year & here I am with a relapse of o.n. - SHIT!!!!! Something's definitely going on...

Well, I still have to count my blessings. My neuro is taking it seriously & treating it aggressively this time. I'm dealing with it better simply because my left eye is dominant, so the blurries aren't causing the rampant migraines that they did last time. The steroid treatments are causing me migraines, but my neuro gave me a ton of Maxalt samples which helps a lot - physically & financially. And even though I can't sleep, I can write to all of you.

Tomorrow is my last IV steroid treatment & then they've got me on a quick prednisone taper - going from 60mg down to 5mg in about 2 weeks. Hopefully I won't feel like a freight train has run me over if the taper is right, but I know that there will probably be some blue days as I go down.

Well, I'm off to do some late night sewing since I can't sleep. I have a lot of projects that are going to get finished between tonight & tomorrow night.

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