Newbie

[Allystyle]

Hi, I'm new to site but not crohns.

Have had 4 ops to remove portions of bowel and currently on humira fortnightly and tramadol for pain.

Currently working but flaring at moment, not much pain but bad d sometimes barely making it in time!

Now they think I have myasthenia Gravis on top of it all!

Feel quite low at times, but determined to not let it beat me!

:redface:

 

[Jessi]

Hi Ally! Welcome to the forum. I'm sure glad you found us. I'm sorry that you're not feeling well at the mo. Is the Humira beginning to fail you?

Hopefully you feel better soon physically and emotionally. You'll find a lot of great friends and support here.

:hug:

 

[RFarmer]

"fortnightly"... I like that word.

Welcome to the forum I hope you find some answers and support here.

 

[David]

Hiya Ally and welcome! I'm so glad you joined our little community.

Let me toss this idea your way.

1. They removed a portion of or all of your terminal ileum.
2. They never told you to take B12 supplements
3. You began to develop muscular/neurological symptoms which they diagnosed as "Myasthenia Gravis".

If that is correct, let me throw this idea your way:

A. They removed a portion or all of your terminal ileum which is where vitamin B12 is absorbed.
B. They never told you to take B12 supplements so over time you became deficient.
C. One of the potential repercussions of vitamin B12 deficiency is peripheral neuropathy.
D. They misdiagnosed your peripheral neuropathy as Myasthenia Gravis.
E. Your symptoms will continue to get worse until you finally are given B12.

My apologies if you have been supplementing/monitoring B12, but we see deficiency here so often and so many doctors don't mention it to their patients that I end up making posts like this.

Sorry for throwing a lot your way Again, welcome!

 

[Allystyle]

Hi thanks all.

They didvgive me b12 injections every 3 mths but took them a while to start them on me.
I've had a really bad cough so unable to take humira for a mth which set me off bad so I had injection yesterday and it did improve the d!

Take care all x

 

[David]

Hmmm, have they tested your B12 levels lately? If not, I'd definitely get them checked. Every 3 months is on the far end of the duration spectrum.

 

[xJillx]

Hi and welcome! I am sorry to hear about your current flare. I am not doing too well lately, and I work full time, too. It isn't easy making it in each day.

I sure hope you start to feel better soon. And I agree with David, get your b12 levels checked!