Please help-In so much pain.

[brooke131]

I've posted on this forum before about possible MS.  I'm a 22 year old female who for the past 6 months has been have health problems.  It all started in June with bladder issues and after a series of bladder infections I was told I had interstitial cystitis.  Nothing seemed to help and after feelings of constant pressure I went to see a gynecologist and received the HPV vaccine.  I then started having terrible joint pain all over my body.  Occasional tingling (I could always shake it off) followed and I became extremely anxious.  A visit to Mayo where I saw a rheumatologist and a neurologist followed.  After copious blood tests and a neurological exam they told me they could find nothing wrong.  The neurologist actually said I looked "perfect."

Since then, I've still been having pain all up and down my right arm.  It goes all the way down to my wrist and up to my neck.  Occasionally my jaw will also lock up.  I've also been having pain and pressure down my right leg up to my hip.  There is also low back pain.  I've since seen a chiro (about a month ago) who took x-rays and said I have 3 pinched nerves.  Treatment has begun but nothing seems to help.  I'm absolutely terrified that this could be MS.  I'm at a complete loss of what to do or who to even see anymore.  I feel like I've exhausted all of my options and I'm so scared.  I've never dropped anything (although with the wrist pain my wrist does feel weak sometimes) or had a bladder accident.  Please, any advice would be helpful.  

[Fluffysmom]

Stress and anxiety can definitely make symptoms worse.  For instance, your lower back; stress can tighten up the lower back and pinch those nerves even more.  I saw a sports and spine medicine doctor about my back, and he sent me for a MRI.  I had a disc protrusion, so he tried an epidural.  It didn't work very well, but one I had done by a neurosurgeon relieved the pain for quite a while.

I get pain from my lower back from all down my right leg into my foot; radiculopathy.  I've learned things not to do so I don't aggravate things.  A nice ice pack helps reduce swelling and pain.

The neck and arm pain could be from a pinched nerve in the neck, and stress could make that worse, too.

I also was diagnosed with interstitial cystitis several years ago.  I don't have UTIs, just urgency and frequency.  Google the interstitial cystitis diet, and you can learn to avoid foods and additives that make things worse.  If you're taking antibiotics for UTIs, that could be causing the yeast infections.  

Have you had urodynamic testing, is that how you got the interstitial cystitis diagnosis, from a urologist?  Do you have a normal bladder capacity?  Do you empty completely?

I know it's hard to remain calm when so much is going wrong, but it truly helps to be calm and level-headed.  We all need to be active participants in our health care, and being upset and worried can interfere.

I hope you find the right doctor to help you figure out and deal with your pain issues.

Congratulations on graduating and getting a new job!

Hang in there, and take good care of yourself,

Kathy

[brooke131]

I should also add that all of my symptoms started after an extremely stressful time.  My mom just got over cancer, I graduated from college, began graduate school, and due to my symptoms had to move back home and started a new job.  Could all of this just be stress/anxiety?  

[wonko]

Hi,

If both the neuro and rheumie are stumped at this point, but you are in a high level of discomfort, I think your immediate focus should be to get some symptom control.  You should not need a diagnosis to get some sort of symptom relief options from your physician.

Finding the right people to diagnose is important in the long term, I'm not suggesting to abandon that aspect, but that is often the slower side of things, waiting months to see this specialists, waiting a weeks or two for that test, etc.  In the meantime, I hope you can go to your physician to discuss symptom management options.

[brooke131]

Hi Shell,

Thanks so much for the feedback...I'm sorry I should have been clearer about my bladder.  I'm not sure if it's a bladder or gynocolgical issue...I've had a series of bad yeast infections as well.  I've never had an accident or even come close.  

The doctor at Mayo just did an in office exam. No MRIs or anything.  He said that since I didn't have numbness, tingling, etc and that I looked "A-OK."  I've seen other doctors as well (rheumatologist, chiros, my family doctor) who all say there is no evidence of MS.  I'm just so scared because I can't think of anywhere else to turn.  

I'm also not sure if I've just become so anxious that that is causing my symptoms to worsen.  There doesn't seem to be any break between symptoms and I've just been generally icky for the last 6 months.  My vision is still okay, my balance is fine, etc.  Could this be MS or am I just grasping at straws?  Thank you so much.  I just don't know where to turn right now.

[sllowe]

HI Brooke,

Don't be terrified, we're all here with you now. Thanks for coming back to us.

I wish I could steer you in the right direction in reference to what you are going through right now, but all I can do is ask you a few questions that hopefully will help us get you the best info and advice.

So, what tests were done at Mayo? MRIs? Labs? Evoked potentials? Do you have findings? If not, if you have the energy, please reach out to them and tell them that you would like your records that you have a Dr. lined up that wants them.

How long have you been seeing the chiro for the pinched nerves? Pinched nerves do take time, and if it has been some time, tell the Dr. you are not getting any relief and.

I'd say there is something going on with your bladder. You shouldn't be losing it. Do you have the means to visit a urologist?  

Ok, questions out of the way.  Take a deep breath, you are not alone in this and I hope we can be a source of info and comfort for you.  

Welcome back,
ttys,
Shell