New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 6/10/2009 6:04 AM (GMT -7)   
I think I am loosing it.

I have been having numbness in my hand and feets and I have been complaining about it for sometime now
I also cant remember anything theses days, that has been going on for a few months.

I was reading about PML and these are the early symptoms of PML

Now I am really scared :S

I know it maybe that I am just crazy hope so, but should I ask a doctor about this wont they just laugh at me ?
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/10/2009 6:32 AM (GMT -7)   
What is PML?
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/10/2009 8:03 AM (GMT -7)   
When I was on Tysabri I was constantly worried about PML (brain virus - usually fatal, no treatment). While PML has occurred in a couple (? one ? ) case associated with other biologics, it's not something that I would worry about on Remicade.

However, anytime you are having numbness and memory issues (that seem out of your norm) it's worthwhile to get it checked out. I don't know exactly what type of specialist you'd see, though.

Like I said, while on Tysabri I was terrified of PML. I'd lose sleep over it... Everytime I'd lose a memory (forget something) I'd freak out. Then I reminded myself that I'd forgotten things all my life. It's easy to allow yourself to slip into that mode... It's scary! It's not likely that you have PML and there are other causes of tingling, etc. So maybe if you get checked out you'll feel better.

Hang in there! BTW - when I was feeling that way, I found that an anti-anxiety helped out a lot. I took lorazepam/Ativan.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 6/10/2009 8:38 AM (GMT -7)   
When was the last time your doc drew blood and ran a CBC? I wonder if some of your "levels" might not be off. Either way, does your doc know of these symptoms? If not make and appt!

Keep us updated.
 


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 6/10/2009 8:48 AM (GMT -7)   
Thanks for the answer SR5599
I have high anxiety so hopefully that is what is bugging me.
I have not been very stable lately due to worse symptoms and that my doc is trying to change my DX..
And it did not help that I was looking through a contract for a medical study, drug very similar to Tysabri and there they where mentioning PML and JC virus.
I cant read this stuff then I get all the side affects :S

But I will check with my doc next week when I meet him
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/10/2009 9:20 AM (GMT -7)   
As you know, anxiety alone can manifest in many ways. One time, while on Tysabri, I was swimming laps in a local pool. I started to feel dizzy (it was a day or so after my infusion). I was telling myself to ignore it, recognizing it as anxiety... (I'd been thinking about PML, I am sure) I kept swimming and did fine. After swimming I went into the hot tub. Then I felt so much like i was going to pass out! I told my doctor and he laughed (in a loving way). Going from cold to hot water and natural body reactions can make a person light-headed. He said, "There's nothing wrong with you! That's a normal body reaction!" I knew it was anxiety-based, but it woke me up to how much I was letting the anxiety get to me.

I do think a visit to check on the tingling would be good. But until you do get around to it, remember the reality of PML is incredibly low.

(((Hugs!!!)))
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/10/2009 9:36 AM (GMT -7)   
I thought PML had some sort of antibody treatment, but I could be mistaken and thinking of a different disorder.

It could also be Raynaud's syndrome which is autoimmune so not impossible given what you already have.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/10/2009 12:37 PM (GMT -7)   
No antibody treatment for PML - it's a viral infection. What they do is essentially replace the patient's blood with donor blood. They've been able to halt the progression, but not reverse it.

I have Raynaud's and it's true the fingers can go numb, but they turn white. It happens as an over-reation to cold. They usually start at either the first or second knuckle and the white/numbness goes to the tip of the finger.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/10/2009 1:08 PM (GMT -7)   
I had numbness and tingling issues that started in my fingers, turned out I was too low on my B12 absorption, since taking B12 (shots at first then weaned to pills) I no longer have any issues regarding numbness/tingling.

Maybe get your B12 levels checked out.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 6/10/2009 9:52 PM (GMT -7)   
Just in case - have you stopped taking Cipralex maybe? From the cautions about that drug:

Stopping the medication: Escitalopram should not be stopped abruptly due to the risk of discontinuation symptoms (dizziness, abnormal dreams, numbness, electric shock feelings, agitation, anxiety, difficulty concentrating, headache, tremor, nausea, vomiting, and sweating). A gradual reduction in dose over a period of time is recommended. If you are thinking of stopping the medication, talk to your doctor or pharmacist about how to do this safely.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 10:30 AM (GMT -7)
There are a total of 2,735,392 posts in 301,299 threads.
View Active Threads


Who's Online
This forum has 151402 registered members. Please welcome our newest member, Len.
334 Guest(s), 8 Registered Member(s) are currently online.  Details
robotguy, Teamchris, Paxton, Mad Martha, Faustmann, pmm73, maria2016, quincy


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer