I am miserable. please help. Pain in back, ... - PBC Foundation

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I am miserable. please help. Pain in back, neck, chest, shoulder and legs.

Sammyy013 profile image
8 Replies

I have terrible back pains for a year now. In my lower back that radiates to my hip and down my left leg. Its like a dull ache but if I actually move it becomes a sharp pain. I have been to 2 neurologist. One which said I had Arnold chairi malformation. And another that said I don't. All they did was say physical therapy. I can't even stand for a full 30 minutes or barley bend over. BTW, I am only 19. Still young. No injuries. Just sudden onset of pain. And then here recently I have this sharp excruciating pain that blows through my right side of my chest into my shoulder blade and through my right side of the neck. It sucks and I am miserable. I don't know where else to go or what else to do. I don't have insurance so I'm paying for All of this from my pocket. Bills are piling up and I have no relief or answers. I have tried so many pain meds and nerve meds with no relief. I have had and emg, brain and back mri with and without contrast. I'm just lost. Please. If you have any advice would be great.

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Sammyy013
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8 Replies
Michiganpbc profile image
Michiganpbc

Do you have a doctor who is treating your PBC?

Sammyy013 profile image
Sammyy013 in reply toMichiganpbc

I don't have pbc. I don't have any diagnosis yet. They can't find anything wrong in the scans.

Sammyy013 profile image
Sammyy013 in reply toMichiganpbc

If you mean Primary biliary cirrhosis. But I am not taking any current meds as none I have tried worked and they haven't offered to try anything else. So I am just doing my best to suck it up. They haven't helped at all.

Bobbycat12 profile image
Bobbycat12 in reply toSammyy013

Sorry you are in pain ..I also have back pain and sciatica along with PBC. Where you posting on the PBC site? Just not sure you are on the right page as you dont mention having it.

health unlocked have good sites for back pains ......it could be you have fibromyalgia....worth looking at this.....good luck finding the cause..you will so please don't worry.

GrittyReads profile image
GrittyReads

PS. What meds did they give you? PBC medication has to be taken long term, but if they have not done blood tests for PBC, they cannot yet know if you've got it.

GrittyReads profile image
GrittyReads

Also, PBC does not show up on scans. An ultrasound of the liver can show large scale scarring, but that alone is not a diagnosis for PBC. The diagnosis is generally based on the presence in the blood of antimitochondrial antibodies (AMAs), the sub-type M2 being the one for PBC, and blood tests of the liver function chemicals - if these are abnormal in a way that is typical for PBC, plus the AMAs, then it's likely it's PBC. If one of the blood tests is normal they may do a biopsy, especially if you have symptoms. However, the pain you describe is, I think, less typical as a PBC symptom. They may be trying to rule out a whole host of other things, but I would check if they have done the blood tests that are specific for diagnosing PBC, first. Check out the 'PBC Foundation' site for more information - link to their website at the top of this page.

chynablue profile image
chynablue

Hi Sammy, I'm sorry to hear that you are in so much pain at such a young age. Are you doing the physical therapy? You say that you don't have insurance - are you in the

US?

Djscallan profile image
Djscallan

Sounds like a possible pinch nerve...the right Dr should be able to find that.

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