I am now confused - MS or ?

[putmeonabeachnow]

First of all I am glad I found you!  I am a 44 year old female, with a diagnosis of RA and Fibromyalgia for the past 5 years. I have been treated with many arthritis drugs , have traveled the ladder of biologic meds and stopped when Remicade infusion ever y 8 weeks was helping. I have other diagnoses as well, depression, anxiety, hypertension, I had an episode with rapid weight loss , this is my main story and it started in April of this year.

I had been on Remicade , a biologic medicine that is used to stop the progression of RA. I was on a year or so when this past April I developed a twitch. It only happened once in a while , my hand or foot would jerk. When I lay in bed at night , the jerks become very pronounced, it kinda scares me awake. I know everyone can understand that feeling when you are on the edge of sleep ...then you feel like you fall or whatever.
I told my Rhuematologist about the jerk and her answer was no more Remicade and go see a neurologist. So in the summer I started seen a doctor from a pretty well know group of neurologists in  the area. My pain has gone through the roof being off the infusion and I have been working with my primary doc to get some relief. I was on Vidodin7.5 one every 4 hrs as needed. This was not controlling me any more so she started the Fentynl patch...low dose at first now i am on 2    ( 75 mcg) patches and vicodin one every 6 hrs for break through,
The first thing the neurologist said is you are on too much pain meds...uhhh duh! I don't think I could do much of anything if I didnt have them . I am a mom to 3 teenagers, I go to college fulltime( last year) and I have a home business at night and on weekends. I need to stay active or I would worry myself to death.  Ok back to the Neuro...
I told him my jerks have gotten worse , its hard to hold on the things at time..cuz out the blue something goes flying from my hands, and now i can have whole body spasms ( when i am laying down- never when i am awake) They have gotten worse..also I sometimes have trouble focusing with my left eye and if I close it, i can see better. It also feels like slight pressure behind the eye. I did the brain MRI and went back to see the doc. He spent near an hour with me telling me how i should change RA doctors and i am on too many drugs..etc etc. Finally got to the MRI , he says "well i am not sure, you have one area here, thats not a tumor, hmmm i dont know what it is really, it looks like a lesion" Long story short he continued on his ramblings...He said Multiple Sclerosis mean"multiple"  and he sees only one lesion..in conclusive  he says , you must have an MRI of the c spine. This I think he decided the last 5 minutes i was with him. I got an uneasy feeling that this doc was odd. I went home thought it over called the office and cancelled the C spine MRI,
One month went by and I went to the RA doc, I had a new one mine was on leave. She said I think all you pain is Fibro related , lets up your Cymbalta and that should help...ahh wrong again! I went into a huge flair and she provided me with a prednisone pack. I was feeling better after 2 days but it was just until this med was over I knew how prednisone works( short course this time was on for 3 years of 7.5 mg before)  When i called back to my RA and said ok the doctor doesnt know what it is I would like to get on Remicade again. She said no you have to follow through and he needs to say no MS  So I did that last Friday and they gave me an appt to come in Dec to talk to Doc Neuro again.
Yesterday I get a call and said the doc neuro wants to see me today. Of course i thought the worst! I went today and this guys was all over  the board again from I might have MS to its you pain meds causing the twitch to ok we need to do a spinal tap!  OMG I said no , thats bad from what I have heard in the past. He said It was needed I said ok can we wait till end of December and he was very agreeable,
So here I am ,Does it sound like this quack wants to make money off my insurance or is he doing the right thing?
Does my twitching and sometimes double vision constitute MS. ? I am so scared. I tried to call the RA doc and missed her to tell her what is going on . Its not the Remicade , he wanted to know why i wanted to put some dangerous medicene in my body when this is not a CURE for RA just treats the symtoms. he said this about 5 times...ahhh I know that too,  have to stop this pain and live, Remicade let me do that. My symptoms havent improved being off . Today my body feels so swollen , You can see my knuckles are red but to me they feel puffy to the max as well as my feet. Thats another "i dont know" why my ankles and feet are swollen. My primary had no idea , she said I had a good pulse in my leg . I am anxious to hear from you on this weird  condition i have going. Thanks in advance

[Karen99]

Ditto to Guirar grrl advice.  If you google "remicade multiple sclerosis" there are clear warnings to STOP Remicade if any MS or other symptoms appear. This is a link directly to Remicades homepage:

http://www.remicade.com/

You are between a rock and a hard spot right now.  Let the neurologist run those additional MRI's.  The neuro doesn't want you to get addicted but you need pain relief.  Ask him if there is something else that he could recommend.  Maybe a neuropathy pain med.......

Here's a link to people who have experienced symptoms similar to yours:

http://www.****.com/community/default.aspx?f=17&m=1217827

Hope you get to feeling better soon.  Keep us posted.  

[putmeonabeachnow]

Thank You  I will look!

[Guitar_grrrl]

Hi, and welcome.  Just a suggestion - a lot of folks here have vision problems, and it would be very helpful for you to break up your paragraphs and put spaces between them.

That said, I think a C-Spine and T-Spine MRI at this point would be very reasonable.  A spinal tap (Lumbar puncture) isn't always necessary to make a diagnosis of MS, but it can be a piece of the puzzle to make a diagnosis.

I highly recommend reading our health pages (links in left column of this page), they're super informative.

Good luck.