so tired of different diagnosis

[clf9699]

Hello I am a 37 yo female always been healthy, no health issues what so ever. In July of 2010 I had what I call a panic attack, I suddendly could not breathe, chest pains and the worst burning in my throat. This came out of nowhere so I went to to the er had cardiac enzymes, ekg chest xray and so on all normal! My pain would come and go so I made an appt with a cardiologist and had a stress echo, more blood work and everything normal. So the cardio. sends me to a GI dr and says its my stomach. Had an upper endoscopy which showed only a little erosion nothing major. Ive been on donnatol, prevacid, kefflex, nexium and prilosec none which have helped the chest pains or stomach pains. So i go for a hidascan which showed my gall bladder was not functioning at all and i elected to have the surgery. BIG MISTAKE now i hurt in my back and ribs so bad since the surgery. Since then ive seen 2 more cardiologists, 2 more GI drs, a rheumatologist, physical therapist for 6 weeks a chiropractor and 2 orthopedics drs. No one can explain this pain im having!!! After numerous tests, procedures and er visits i am at wits end. My symptoms are trouble remembering, back pain chest pain, rib pain I am so tired and cannot function somedays i dont even get out of the bed. I had my first visit with a neurologist last week and he seems to think its ms, but no pain meds to help me.

[Lulu54]

Welcome clf,  I hope we can be of some help to you about this process.  Can you share a bit of what the neurologist is saying and the link to MS?  There can always be other disease going on and summerluvr is our poster child of that one - she was diagnosed with cancer while most of her team was thinking MS.  But as she said, that is extremely rare.

I'm not sure about the SOD idea, but this person does come through here regularly and always offers ideas about something other than MS. So take that for what it's worth.

You are so stuck with these symptoms because pain is next to impossible for a doctor to actually see and they have to take the patient's description and build from there.  I am glady ou have a neurologist who is listening to you.

Hopefully you will come back through here and share more of your story and your questions.  THis can be a great place to hang out.

best, Lulu

[Cosmobirdy]

I understand your frustration.  When we have all these weird symptoms and pain, we want someone to be able to tell us WHY, and to then be able to tell us what we can do about it.  It's good that you are now being evaluated by a neurologist.  You may or may not have MS in the end, but hopefully he can start to evaluate you, and do various tests to rule out other possibilities.  There are many MS mimics, and it can unfortunately take a while to get through the various tests necessary to weed them out.  I am personally not a patient girl, so I know that the waiting can be frustrating.

I presented very similar to you when this all started for me.  I began to have alot of chest pressure and pain.  I sometimes would have trouble breathing when it got really bad, and sometimes got dizzy.  I had pain in my upper back and sometimes into my arm.

I first was evaluated and tested by 2 different cardiologists.  Both were terrible experiences - they were so rude and condescending - and all the cardiac tests came up negative.

So then it was the GI route.  Negative HIDA, negative Ultrasound.  My gallbladder was working just fine, and we were back to square one.  In the meantime, I began to have weird numbness in my right leg and face.  I was so exhausted, it was difficult to function.  I was having more and more problems with cognitive issues, and began to have major problems with my balance.

At this point, nothing made sense symptom wise.  (I spent 25 years in the medical field and have a pretty good understanding of organs, symptoms, disease processes, etc.)  I was beginning to think that I may be crazy, and I didn't want to see any more doctors or go through any more tests.

Fortunately, I am blessed with an awesome family doc.  He knew something was wrong, he knew I wasn't crazy, and he wouldn't give up until we had the answers.  He pushed me to see the neuro, and that's when all the pieces fell into place.  The neuro felt it was MS from the very first visit - and then it was a matter of going through all the additional tests to rule out every other remote possibility.

So I guess what I'm saying is hang in there... :-)  I understand the kinds of symptoms you are dealing with, and I know how frustrating and scary it can be to be in your shoes.  Hopefully your neuro will begin to help you get some answers, one way or the other.

You have found a wonderful group of people here, with so much knowledge, support and compassion.  I found this "home" when I was still undiagnosed and scared, and I can't begin to tell you how much these wonderful people helped me.  I suddenly didn't feel so alone in all this.  This is a place where you can ask and share what you want or need to - it is a very unique forum compared to many I have seen on the internet.  You are welcome here, no matter what you find out in the end.  

Rita  

[summerluvr]

Have you had any scans of your back and spine?  CT or MRI?  I don't have MS, I have a rare cancer so I only know the kind of pain I had when I had a broken rib from my cancer but no one knew it and kept saying it was a pulled muscle!

How long ago was the surgery?  I have learned it takes a lot longer to recover then doctors originally tell you!  I would guess from that surgery at least 6 months! and if you get an scar tissue bands then it could take longer still!

[Red_Star]

Has Sphincter of Oddi dysfunction (SOD) been ruled out? SOD is a condition in which the sphincter (located at the junction of the bile duct and duodenum) fails to relax. SOD is especially noted after cholecystectomy (gallbladder removal) however it is possible to have this condition prior to gallbladder surgery. Cutting the sphincter with a special catheter passed through the endoscope often relieves the pain.

Symptoms of Sphincter of Oddi Dysfunction include:

Abdominal pain
Pain behind the breast bone radiating around to the back
Pain/pressure under rib-cage that can radiate to the back
Sharp pain postprandial (after eating a meal) located in the right upper quadrant or epigastrium
May be associated with nausea and/or vomiting
Fever, chills, and jaundice are uncommon
May also present with acute recurrent pancreatitis

[HVAC]

I hear you. I am sorry. it is frustrating. Unfortunately human beings are hard to diagnose. we also have a medical model where every Doctor specializes and can only diagnose with in his specialty. Been there done that and it is no fun.

I am not saying you have MS. Some come here and do and some it turns out in the end they do not. Either way you are welcome. A MS diagnosis can be a long process. many times the Doctor does test and follows every six months doing MRIs looking for changes. Looks like you probably have had most of the blood work to rule out other things. Unfortunately a Doctor can't scope you or do surgery to see if MS is or is not there. Neurologists often will do nothing until you have a diagnosis. You can push for medication for pain.

Dealing with the pain you describe is a whole different kettle of fish and no easy fix. For me it took many years and they are still balancing. The problem is all medications have side effects and are different which each person. Until they kinda figure what is going on they can make things much worse.

The medications which would be used are typically muscle relaxants which can impair driving and every day life in higher amounts. Anti seizure drugs and anti depressants. Opiads do not work as well. They are kinda of a last resort.

I ended up at a pain clinic. The process is really slow. I go once a month and they work with one area of pain. They are honest as all my doctors are they can't fix it. It is better. I am in pain every day but I get through the day.

For me for pain I have to get out of bed no matter what. I am off to the mall to walk. Even if it is from bench to bench. Inactivity makes my already locked up muscles way worse.

Alex