GETTING MY FIRST ROUND OF IV STEROIDS....

[cz1970]

Hi Cyber Family,

Im just posting cuz I feel so punee... This is my 4th flare, no dx.  The neuro said IV steroids this time period so they set me up. I'll see him in 3 weeks.  I'm so confused. He told me in Jan "Its not MS so just go on with life" then Friday the Neuro nurse calls and said "Well, he told you MS takes a long time to diagnose. He can't call it till the MRI is positive" WHAT!? He said it wasn't even though I know it is.....  Anyway, I go back for follow up w/ him in 3 weeks. Meantime the Dr at the Clinic where I went for the infusion said that my neuro needs to call it as it is... MS! "If it walks like a duck, quacks like a duck it is a duck" He also said that to go over my time line and get the Neuro to say what other things this could be... (NOTHING) so why not treat it now. If he declines the PCP from the clinic said to ask him to send me for a second opinion.  That will be awkward but i'll do it.  

This flare isn't as intense but I have more symptoms. Some are extreemly painful!  First my right hand started getting zapped like crazy! then a week later both my feet started hurting SOOOOO BAD! Like walking on sharp rocks barefoot or running a marathon barefoot. THen my right leg got weak and spastic, right hand went to sleep off and on, ribs got wierd, llermettes kicked in, r eye got blurry, got dizzy and really tired... So everyday symptoms get more or worse so last night was my first IV roid... Now I have insomnia! YUCK! I'll have to ask for somehting to sleep when I go tonight. I cant wait till my feet quit hurting.

Ok, I just wanted all of you that were so helpful and encouraging to me about my feet to know I'm finally getting help and hopefully get on some DMD's soon!

Cz

[cz1970]

Thanks for the input. First my LP was neg kinda... I need to pull it out cuz I think it showed protein and 1 O-band but was considered normal. I just forgot the details. 2) i will be doing the taper off the IV roids. 3) Insomnia totally kicked in so the Dr. at the clinic wrote me a rx for Ambien. He too (a different PCP from Day 1 also said I need the DMD's Asap. He also told me to take it easy and none of them want me going back to work on Monday. I jsut started a job in the ER! I work 7am-330pm... Its a pretty easy job. I work as a CNA instead of a nursing student so my responisibilities aren't bad. I want to try if that is my feet have calmed down enough and I can move my stupid leg more normally!  If I still feel icky, i'll call in I guess :(. I dont think I've called in sick to work in years!

I did find a friend who's MS Dr is the top MS researcher in the Pac. NW. She works in Seattle at Valley Grace or something like that and she is not a lesion counter.So, I will ask to get sent there maybe. I"m going to give this Dr. one chance and then thats it from here. My patience is 2 fold. I live in a small town and have to be careful not to cut my own throat professionally as a RN once I'm out of school. A bad rep will come back and blow my chances of getting a job at the hospital so I have to somehow stroke his pride in a way to get myself some help!

Is this true????? The RN said last night that often a pt's first IV Solumedrol infusion helps put the disease in remission up to a year or 2.   Have you heard that?

Thanks!
cz

[Quixotic1]

Oh, and I TOTALLY agree with the PCP from the clinic about getting a second opinion if this neuro doesn't get your act together soon!  Q

[Quixotic1]

Well, it sounds like your neuro is slowly eating crow.  He is beginning to treat you as though you have MS, but he has his "face" and ego to keep safe.  If there is continuing progress toward a definitive statement from him - AND toward the DMDs - then I guess things are okay.

The OCT is a good bit of indication pointing towards MS.  It hasn't yet shown to be a great diagnostic tool.  It was proved to be a more reliable test for documenting the brain atrophy of already established disease.  But, he certainly cannot ignore it.

I don't think he is looking at the McDonald Criteria very closely.  If you are also showing abnormal neuro exam findings with your flares.  If you have at least two different abnormalities with two different flare-ups then you already meat the Criteria for diagnosing MS.  The lesion on MRI is just gravy.  The OCT is not mentioned in the diagnostic Criteria, because it is so new.  But, I suspect it might find a place in future revisions.

It seems he is a rigid-minded "lesion-counter" and that is very much to your disadvantage.  IF you have the right findings on neuro exam and have had increased abnormality on the exam showing disease in different areas of the CNS, then you have already "made" diagnosis.  Was your LP negative?  I don't remember.

The steroids always seem to increase my stiffness and spasticity on the first day  - I have no clue why.  Maybe because of the fluid retention making them just feel stiff.  BTW be careful with your salt intake.  Lots of salt will increase how much fluid you retain.  Also, if you get cramps, I recommend getting the over-the-counter Potassium Gluconate tablets.  Steroids cause potassium-wasting from the kidneys.  I take 3 or 4 tablets about three times a day when I'm on steroids and it really helps.  Each OTC tablet has about 3% of the minimum daily requirement, so that is still only about 1/3 of your daily need.  It helps immensely and is a very safe amount of potassium to take if your kidneys are normal.

Steroids are known for causing insomnia, so unless you want to be up all night house-cleaning, ask your doctor for some Ambien or something to help you through the course.

You are making progress with your doctor, but I suspect you would be long already diagnosed with a real specialist.  I would not have had your patience.  Good luck.

And stopping the steroids after 3 or 5 or 10 days will not cause you problems like Spazzy had.  A few people  will have relief of their MS symptoms with steroids and have the symptoms "rebound" back when they stop the 'roids.  Those people need to taper off.

Quix