No answers for my symptoms...Can anyone help?

Hi everyone, I joined this forum 2yrs ago after a severe flare-up of my Ulcerative Colitis. It took a rough 2yrs to get my UC to midly controlled. Since, I have had some other issues and I can't find one doctor to help me. I've been told its anxiety, depression, hypochondriac. I have finally hit a dead point. Here are my symptoms...Do any of you believe this might be fibro?

Constant generalized body pain

Pain in my wrists, fingers, knees ankles, feet etc..

Flares of numbness & tingling in my hands, fingers, legs, & feet. This can start in one extremity and move to the next. It may last days or minutes.

Raynauds for as long as I can remember..

Severe back pain. Mostly lower back but Upper back and the middle of my spine.

Muscle Twitches/jerks that occur randomly all over my body

Muscle spasms all the time

Recent change in vision: blurred ( even after new contact prescription), sensitive to light, dry eyes, mouth

Headaches

Abnormal EEG showing Frontal lobe seizures

Body stiffness, I have had 3 episodes where I lost  the ability to move either my right or left leg, foot drag, stiffness in my leg muscles

Poor ROM- I can no longer bend over.

I have had extensive test MRI's, X-rays, blood work, Spinal taps, EMG/NCV etc..showing nothing.

Can anyone give me advice?

Hi, Jellybean, welcome to the fibro forum! I'm sorry for your pain. Fibro is not
easy to diagnose, the reason being is that many symptoms are simular to other
disorders. Many of us have seen a few doctors before a diagnosis was made.

Bloodwork should be done first to rule out the connective autoimmune and
neurological diseases. I see that you have had extensive testing done already.

Sometimes time and retesting will reveal a diagnosis. I have fibro along with
autoimmune stuff and it took a very long time and numerous specialists to get
things sorted out.

I have a very good rheumy who has referred me to specialists. You might ask
your general practicioner to refer you to a rheumatoligst and neuroligist.

Do checkout fibro 101 on the top of page one. Sherrine has compiled lots of
good info. there is a thread...what else good it be that might help you.

Don't give up jellybean...hoping you can find an excellent doctor and find relief!

Hugs, Robin

I see that you have foot drag...mine was attributed to Degenerative Disc Disease
and a lumbar laminectomy corrected it.

I have fibro and have almost every sympton on the list and All the tender points. But, this past summer something just didnt seem right. There were a few symptons that were new and a bit different than the normal fibro ones. So, finally after about 9 mos. of this I went to the doctors and they did some blood work. They didnt just do the normal, they also checked iron, and b-12 levels. I think the iron and b-12 have to be specifically asked for - they are not included in the regular cbc, lyme, lupus type blood work.
Well, anyway, my levels were so low that the doctors were surprised that I could even walk across the room w/o passing out let alone drive myself there.
I googled b-12 deficiency and pernicious anemia and almost all their symptoms are the same as with fibro, which is why I passed the symptoms off as fibro for so long. I ended up getting a blood transfusion, and now I have to live off b-12 shots for the rest of my life.
I am not saying that this is the same for you but if you know that something is different about your symptoms- keep at the doctors until they absolutely cannot blame anything else.
(p.s. my body cannot absorb and produce b-12 from the food I eat and that is why I will need the shot. It is because I had some of my stomach and intestines removed. If they should find your levels low, you will probably just have to take the tablet form - just in case your leary about shots this will ease your mind)

Hi Jellybean,

Welcome to the HealingWell Fibromyalgia forum!!! We are so happy that you have joined us.

I am sorry that we can't be of more help with your symptoms and diagnosis, but like was posted above, you have to rule everything else out before you can get a fibromyalgia diagnosis. It can be a long proces. But once you find out what is going on, a lot of the anxiety will go away and you will know what you are up against.

Fibro101 is the thread to read. There is a lot of helpful information on there. Thanks to Sherrine, she is the one who put it together.

I hope that you get some answers soon. In the meantime keep posting. We are all here for you.

Hugs, Karen

Hi Jellybean,

Welcome to the forum! I'm so sorry you are having so many problems. That's quite the list...and although alot of it does sound like fibro, alot of other conditions have very similar symptoms. Have they ruled out MS? I'm not a doctor and don't want to scare you, but given your symptoms and recent changes in vision I would want another MRI of the brain done to be sure. Try to get a referal to a neurologist. At least if you can rule out some things, you'll be that much closer in getting a diagnosis with some proper treatment soon.

Wishing you the best of luck!
Krista

I had almost all of your symptoms when I had Lyme Disease. After a lengthy treatment. most of these symptoms either went away or became not as severe.

The tests for Lyme are not accurate so getting an accurate diagnosis is not easy. Good luck.