remicade and neurological symptoms?

I just had a horrible ER visit  - the nurses were great, but the doctor was horrible.  He came in and took one look at me and had his diagnosis without listening to me.  The first words out of his mouth were " so I hear you're suffering from dizziness". As soon as I started speaking, he spoke over me, and wouldn't listen.  I was trying to tell him I was having vision problems and weakness and tingling in my limbs that would come on for a brief time, and then go away, but he wasn't at all interested in listening to me.  He tells me my blood pressure is too high, and I should get that checked. I try to tell him I've had my blood pressure monitored regularly lately, and that I've never been considered hypertensive,  but once again it's in one ear and out the other.  Then he asks if I'm menopausal, and when I said no, he says that I may be starting! He then orders an EKG and blood work, and when they come back OK, he tells me to go follow-up with my family doctor.  Meanwhile the symptoms have continued.  I saw my family doctor, who sent me to another hospital right away, as she felt I could be having TIA's.  They check me out much more thouroughly, but still no diagnosis. I'm going to be seen by a cardiologist, and wear a holter monitor, but I'm scared. The symptoms feel exactly like when I had a severe allergic reaction to a med while in hospital a few months ago -the tingling, heavy limbs, and near blackout and then shaking afterwords, and then a spike in my blood pressure.  I was reading that remicade can cause neurological symptoms. Could it be the remicade?  I'm only taking it and nexium right now.  I also have incredible heartburn, but apparently the two EKG's done have been normal. If this has happened to other people, please let me know. 
I'm scared as it keeps happening

Thanks,

Bev

P.S. Sorry about the long winded post, but I wanted to vent about my mistreatment by the doctor at the ER too.  

Thanks Dodger,
I appreciate your response I was told it wasn't TIA's as the occurances were too frequent and " I would have had a full-fledged stroke by now". They did a CT Scan and no signs of bleeding. Apparently I have an old calcification where I once bled (probably from when I had a severe concussion once), but no new signs of problems. All I know is I keep having symptoms that I described above, and I'm scared. Hopefully they'll find a cause that can be treated soon. I'm going to call my remicade coordinator tomorrow and run it by her. I've had a few wierd and wonderful health problems this year, out of the blue. I developed a auto-immune bleeding disorder where my body attacked its platelets -resulting in 4 hospitalizations and large doses of blood products (IVIG). Plus I was hospitalized for a bad infection last month (again out of the blue and never diagnosed fully -just really high white blood counts, that went down with intrevenous antibiotics). Hence, when I get this out of the blue-I start to wonder what is going on next! Maybe the monitor I'll wear early this week will show something. I just hate not knowing. I'm afraid to walk my dog too far away, in case I collapse, not to mention I won't drive my car until I know what's going on. I have to rely on my husband, and although he says it's OK, it's an additional burden on him worrying about me.

Thanks again,

Bev

 i. When I was on  remicade my neuropathy sx from B12 deficiency got much worse and when I had my levels done they were low again. I asked all my docs if they ever heard of remicade causing B12 depletion, and they said no. I had been on monthly shots of B12. I am now on humira and take B12 every 2 weeks. Get a level drawn and then start SL B12 (methylcobalamin). I buy mine at whole foods and take this every few days. Have you had any resections? My neuropathy is not as bad right now since humira and last level was around 400. And my brain is a little less foggy. Lots of luck.

Thanks for all the information you all have provided me with. I'm still waiting to hear from my remicade coordinator, but I feel it could be the remicade too.
Bunny -did the symptoms occur right away after infusion or later? It's been 4 weeks since my infusion, so could it still possibly be the remicade? I really like the remicade so far (although I find my resistance to infections very low) so I'll be sad if it is the cause, but I can't have this problem keep happening. I'd hate to stop the remicade though and then find that the problem is totally unrelated.

Bev

im not quite sure when it started but it was within the first 6 months or so. it kept getting worse for about a year and then i leveled off.

bunny

Hello!

I was just at the ER today and had a simular experience. The doctor had this really low voice and seemed like he tried to dismiss my symptoms even though I had high blood pressure, fast heart rate, fever, the big D, and felt very light headed. At one time, my heart rate was about 110 and within seconds it jumped to about 150 and thats when I started feeling very light headed and had chest pain, and a tingeling, burning sensation on the right side of my body. I told the doctor how scared I was and he's response is, "well the blood work didn't show anything to be concerned about!" WHAT! NOTHING to be concerned about? The nurses were not very friendly either and said, "you can sleep at home!" Like DUH if I felt good I would have, why do they think we are in the ER because we want to be!! I am very dehydrated even though I am drinking TONS of water and now I have noticed heavy limbs too. They told me I have to make an appointment with my regular doctor if I want further testing. The people at the hospital are the first ones to try to boot people out, but yet they are right there waiting for there pay check. Do some doctors and nurses even give a darn about people?? Im beginnig to think not.......

Hi Fellow Canadians,

Could you tell me what a Remicade coordinator is? and what services do they offer? Where are they located and what's the best way to get in touch with them?

Are they able to support in accessing drug coverage for Remicade? How do they do it? What information do they need from you in order to file for drug civerage on your behalf?

Can they arrange to get us the infusion even before I get drug coverage?

Please respond urgently.

Crohn's Fighter