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Crohn's Disease Forum » Support Forum » Should I go to the ER - Pain / Numbness / Weakness


02-08-2013, 06:36 PM   #1
Chad K
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Should I go to the ER?

I've been having a lot of issues lately, not just from crohns, but also other things. I haven't been able to fall asleep for days which could be from something I was prescribed called cymbalta. I've been having lots of pain and weakness on the left side of my body, and it's been getting worse and worse! I've gone to several doctors appointments and had several tests done (MRI, nerve test, EEG) and it all looked normal according to them. I am very scared, I don't know what to do. The neurologist pretty much just flat out said he doesn't know whats going on. I don't want to keep wasting time scheduling appointments that take 3 weeks and tests that take weeks to schedule me in.

Do you think this is the right thing to go to the ER for? Weakness pain and numbness on the left side of my body, light headed and can't sleep for days, in addition to the crohn's pain, and its been like this for months and as of recently getting a lot worse. I just want this figured out ASAP, it is very painful as if my left leg and arm are constantly lifting weights and not wanting to rest!

Thank you for your time and any help that you have.

Chad
02-08-2013, 06:55 PM   #2
SarahBear
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Hi, Chad!

Do you have medical insurance? If there are no financial concerns, then I'd say yes. You're getting nowhere with your neurologist and you have some real concerns. It might help try a different angle.

Have you spoken to any other doctors about these issues? How long have you been diagnosed with Crohn's and what medications are you taking?

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02-08-2013, 06:59 PM   #3
Chad K
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Thanks Sarah! I am currently on Humira, cymbalta, and sometimes ambien to help me try and sleep. I was diagnosed with Crohns in early 2010. I've talked to my primary doctor and neuro about this and I feel like I'm going in circles and not taken seriously. I don't like going to the hospital as I've been in there a lot and had 2 surgeries for my Crohn's, at one point had a colostomy bag which got reversed. I do have good medical insurance fortunately. I don't know what to do at this point. I'm hoping if I go to the ER I will be taken seriously and get tests done immediately.

Thank you for your help.

Chad
02-08-2013, 06:59 PM   #4
KWalker
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Just like Sarah said, if money isn't an issue I would go to the ER.. Actually, because you're even contemplating going to the ER I would say that's enough reason to go. It is better to be safe than sorry and if you've been going through this for a few days it's not fair for you to have to go through it any longer.

Best of luck, and please keep us updated
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02-08-2013, 07:01 PM   #5
CrohnsChicago
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I think it would be a good idea to go to the ER. Any pain and numbness is not normal and should be addressed immediately. May I also suggest discussing with your doctor all of your medication options?

It is possible you could be having a rare reaction to the meds that your doctor is unfamiliar with personally. Another situation could be restless leg syndrome (RLS) which is common for some mediations.

Not saying this is your situation but I do say this because I was on prozac once and I swear it made me crazy with intense sudden mood swings I had no control over as well as swelling that doctors and ER physicians could not diagnose. I swore up and down I was fine before starting the medication, but they didn't believe me. One day I went to the ER after an episode and refused to leave until they contacted my doc and had him switch me to another antidepressant. He finally did and it made a world of a difference for me and all those manic/body swelling symptoms went away.
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02-08-2013, 07:58 PM   #6
Chad K
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Thank you all for your help! I will be leaving soon to go to the ER. I will keep you updated on this thread. I hope I get the help I need finally, and get on the right track for getting better. Thank you again. If anyone else has any other suggestions too please let me know.
02-11-2013, 12:02 AM   #7
LisaL
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I am a bit late to this thread, but i agree with everyone else. Since you have insurance, use it. Your symptoms are concerning and you have not been able to get sufficient answers.

Please keep us posted. I hope you are feeling well soon.
Lisa
02-11-2013, 12:11 AM   #8
DougUte
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Bit late here to, but I agree. Get in to the ER.
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02-11-2013, 02:20 PM   #9
Chad K
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Thank you all for your support! I went to the ER and was there all night getting tests done. I had an MRI done of my spine, and they said it looked normal from what they could see. The doctors are pretty much all stumped as to what is causing the pain/numbness/weakness on the left side of my body. It's gotten so bad to the point where I cannot even write one sentence neatly with a pen and paper because of how numb and weak my hand feels (i'm left handed). I'm relieved that my spine seems fine, but I still have no clue as to what is causing this. I am due for my next Humira injection today but I am afraid to take it because I have not idea if that is causing it, or what. It's been so tough working a full time job and dealing with these symptoms.

Thank you all for your support! If anyone has any ideas as to what this may be, I'd greatly appreciate it!

Chad
02-11-2013, 02:41 PM   #10
CrohnsChicago
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Chad,

I'm sorry they were unable to find anything but I am also glad they were able to rule out anything seriously wrong.

I understand what you mean about working a full-time job. It's really hard to do when you aren't feeling well from IBD. It takes a lot of energy and effort on your part to get things done and done right. I hope you are able to make time to rest in between work hours. And I hope you can figure out what's wrong soon. Make sure you contact your GI and ask about the humira. In the meantime, here is an overview of common and rare side effects for Humira. Numbness, muscle weakness and tingling are definitely listed as a less sever side effect but you should not stop taking your medication without consulting your doctor first.

http://www.webmd.com/drugs/drug-6471...Q&pagenumber=6



Since you have already been to the ER, I am going to edit the title of your thread to include "Pain/Numbness/Weakness" to see if anyone can offer further advice on your situation.
02-11-2013, 02:43 PM   #11
SarahBear
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I'm sorry you didn't find any answers.

I'm with Chicago on this one - it sounds like it probably is a side effect of Humira. Have you brought this up with your GI?

I hope things get better for you soon.
07-16-2013, 12:15 AM   #12
Chad K
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Still feeling even worse, pain and numbness on the left side of my body, some on the right side as well. Sometimes its hard to lift my left leg and it feels like it is restless. I had to call in sick to work today again. I just want my life back so I can enjoy my life in peace with my fiance, family and friends. All the doctors so far dont know whats going on... I have to make an appointment now with UCLA which its been hard getting ahold of them. I am scared and stressed about this and a lot of things, and get panic attacks every day. I just want to be healthy. I accidently missed a dose of my Humira as well. I just want things better. Hopefully we will get things figured out when I go to UCLA since so far no one knows whats going on.
07-16-2013, 01:43 AM   #13
Jennifer
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Not saying you have any of these but I was looking up your symptoms and thought I'd throw some of these out there (you can mention them to the doctors out in UCLA if you like).

Myasthenia gravis
Transient ischemic attack (TIA)
Multiple sclerosis
Fibromyalgia

Also it very could well be an interaction with your meds like Cymbalta and Ambien. Did your symptoms start soon after starting any new medication including the Humira or anything else you might be taking?

Do your symptoms come and go or is it constant? Does the numbness go away or lesson when you change positions? In which position/s would you say makes your symptoms worse or better?

You'll be in good hands at UCLA.

Edit: Have you had your B12 tested for deficiency? Being low or deficient in that can cause numbness. Being low or deficient in vit D can also cause chronic pain.

Also with the MRI you had did they check the entire spine and your skull?
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Diagnosis: Crohn's in 1991 at age 9
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-17-2013, 02:33 PM   #14
Chad K
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Thank you Jennifer. My dad actually has MS, which is a concern of mine, and my older brother has MS like symptoms as well. However, I have had an MRI of my brain and neck, and that seems normal. I also had an EMG and some other things done. Thinking back, my symptons actually started before the Ambien and Humira, when I started noticing numbness in my fingers/wrist.

My symptoms are constant, but worsen A LOT when I use my hands more like doing simple things (typing, doing dishes, etc). Stress contributes as well. I have been taking Xanex with helps with the stress, but the symptoms never seem to want to go away.

At one point my B12 was low, and I started taking B12 supplements which did not help. The last few blood tests just showed a low vitamin D level, so I have been taking Vitamin D daily now.

I really hope UCLA can figure this out for me. It has been so difficult already with my Crohn's and Ankylosing Spondylitis, and now I have this going on. It's getting harder and harder to live my daily life and work a full time job. I was looking into getting disability at one point, but was told I have to quit my job to see if I can get approved. As hard as it is working with these problems, I cannot take that risk because then I lose my health insurance and my income, so it's taking a big gamble.

Hopefully this gets figured out soon. Thank you for your help!

Chad
07-17-2013, 02:40 PM   #15
Jennifer
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If supplementing B12 doesn't work for you (as with many it doesn't due to absorption issues) then B12 injections may be in order. I have to get them myself because I'm had a resection of my ileum making it so I absorb it even less now. Talk to your doctor about B12 injections. After supplementing vit D did your numbers go up? Are they in the normal range now? My vit D was also low and it took a couple tries to find a dose that worked for me. In total I take 6,000IU per day (1,000 in my multi and 5,000 from vit D3 liquid).

Have you been tested for RA (there are two blood tests for it)? I ask as you mentioned starting having difficulty with your hands such as washing dishes etc.

It'd be good to have an MRI of your entire spine to see if anything is pressing on/cutting off your spinal cord. Don't want you to have permanent nerve damage.
08-08-2013, 05:11 PM   #16
Chad K
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Unfortunately, I went to UCLA and felt like I wasn't treated that well. Took me so long to get there with all the traffic. I finally got there and had to wait in a waiting room to get to another waiting room. I finally get into the doctors office (on time of course) and sat there silently for 45 minutes until the doctors assistant finally showed up. Even though I was specifically told by UCLA on the phone that this doctor has studied my case and wanted to see me, when I got there they knew nothing about me, nothing at all about my case. I spent a long time explaining all my issues, and he looks at me with a look on his face as though he doesn't believe any of it. Maybe because I'm a young 26 year old man? I have no idea. He just asks for copies of my records and I go "wait, i thought you had all this. I was told to specifically see you. My doctors faxed everything over." He just goes I don't have anything on you, tells me not to fax or mail them but instead spend hours driving back to UCLA with my records on a CD because "the mail system is that bad there."

What a waste of time at UCLA. I was mad and told the doctor that it feels like I just keep getting pushed around from doctor to doctor doing the same tests answering the same questions and I am just going in circles. In the meantime I feel worse and worse and am so scared I don't know what to do.

Jennifer - thank you for your message. I have been taking B12 and Vitamin D daily, and have Ankylosing Spondylitis, probably some RA with that because all my joints hurt and get stiff. I had another blood test done, lets see what that brings.
08-08-2013, 09:52 PM   #17
Jennifer
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Jumping through all these hoops really does suck and that's an understatement for sure. I know the drive out there is horrible (I used to live in Camarillo and that's when I had to go to UCLA but for something completely different then what you're dealing with). Its a whole day spent driving and waiting then driving back (with waiting in the horrible traffic). Even though it takes up an entire day I think at least getting your records to them would be beneficial (I wouldn't mail anything there and I've had tons of stuff "supposedly" faxed that weren't so bringing it all in person can be best sometimes). I don't know who told you that they had your records and knew of your case, that's just shitty. If anything its a horrible lesson about how hard getting proper treatment can be. My mom would actually bring all of my records with her to all of my appointments when I was a kid and I'm assuming its because of shit like this (I just don't remember it).

I hope you figure out a way to be able to keep going out there. It would be awesome if you had a friend or family member who could go with you or drive you if need be. My first GI was 4 hours away from where I lived and my dad had to take time off work to drive us all up there. It was worth the trip. I'm hoping that in the long run (clearly the first trip didn't work out as planned) going to UCLA will be beneficial for you. Keep us posted.
08-08-2013, 11:34 PM   #18
Dragonfly72
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I hope you dofind the answer soon. Has anyone suggested a spinal tap to test for MS? I don't mean to scare you but, sometimes that with an MRI can bring a better picture together if it is possible MS!
you are in my thoughts and prayers and I agree it is always good.to have copies of your records tonbring and to keep. A binder of them for yourself and bring it with you to each visit. Best of luck and keep us posted.
MICHELE
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