Rough day yesterday

[zenhound]

So I'm in limbo so maybe should be posting over there instead of here.  Not sure.  

Yesterday I woke up with hurting feet and face so I knew it was going to be a crappy day.  It was.  My right foot ended up hurting so bad I had to leave work because I kept flinching or semi-shouting when it would hit.  It was sort of a low level constant pain but then had these huge nearly unbearable spikes.  And of course the facial pain (originally diagnosed as TN but later changed to facial pain) was fun as always.

I'm not really sure what to do.  My primary doc seems to believe me about the various symptoms that I've had.  But the neurologist has basically written me off it seems like.  Which is kind of understandable since there is no actual evidence that whatever is going on with me is neurological.  There were a couple of abnormalities on the neuro exam but she seems to think they're nothing to worry about.  All MRIs are completely normal.

Most of my symptoms are just irritating.  Vision issues (sparks, phantom lights, dark shapes, light sensitivity), buzzing, numbness.  I don't really care about that stuff and just ignore it.  But this pain I don't think I should have to deal with.  I am on amitriptyline which does dampen it but doesn't stop it, as yesterday made clear.  And the tylenol 3 I have a prescription for doesn't do much to take the edge off.

I guess I should go see my primary doc and have a conversation about all this.  See where to go.  She did tell me to see my neuro when I complained about ringing ears, but the neuro isn't interested.  Maybe it's worth seeing other specialists.  Podiatrist, just to see if there's a reason for the foot pain?  My feet seem healthy and normal and the pain doesn't respond to stretching or rubbing, so I'm not sure that's the answer, but... Maybe I should see a rheumatologist or something.  

Argh.  Anyway I kind of just wanted to vent after a crappy day.  Don't expect answers because I don't really think there are any, which is intensely frustrating.  

[Lulu54]

Limbo or here or both.... it all is good with us!  If the pain you are experiencing is from a neurological condition, it will not respond to NSAID's, opoids or any of the other traditional pain medicines.

What you need are the drugs that work with neuropathic pain.  Many people here are on those without having a DX.  It is the humane thing to do to treat the pain, regardless of what it takes.

Remember that it takes a while for those drugs to begin to work - don't give up on them if they don't work immediately.  We have a good health page on this ....

http://www.medhelp.org/health_pages/Multiple-Sclerosis/General-Principles-of-Treating-Neuropathic-Nerve-Pain/show/452?cid=36

It might shed some clues for you on what to discuss next with your doctor.

stay in touch, Lulu

[RedFlame]

oh, I forgot to say that it doesn't matter if you are diagnosed or not, we are all a community.  I don't even think about who is and who isn't diagnosed

[RedFlame]

I'm so sorry you are going through this.  It's really aweful, I know how hard it is.  

It's horrible to be in so much pain and then feel that doctors aren't helping you or even believing you,  

If you haven't done so already I would make a list of the symptoms you are having.  Then do as time line.  I would go in to your doctor and present all of this with him/her in a calm manner.  Just letting him know what's happening.  He may have other docs that he can refer you to.  

Here is how I handled what you are going through.  I had my doc refer me to a rheumatologist.  The rheumy ruled out everything but kept me as a patient.  He eventually diagnosed me with Fibro even though I didn't fit the criteria.  This way he could prescribe the medications for pain ans spasticity etc.  He knew I had MS and was glad that I eventually had someone listen.  It took a long time.  I was diagnosed, undiagnosed and diagnosed again.

I know it's really tough.  It's a long process.  

There will be answers, you just don't have them now----they will come!

I know you don't feel it though.

Hang in there with us

Hugs

Red

[figuerpa]

You are more than welcome to vent here. There are quite a few people in limbo here and everyone is more than willing to add some insight.

Just because your MRI's are normal doesn't mean there isn't anything going on. Have you seen an EMT for the riging in your ears to rule out other causes? Have you had your eyes checked for optic neuritis? Were your MRI's with and without contrast? Just some thoughts to get other things ruled out.

If you feel that seeing a rheumatologist will help then go for it. It can't hurt to try to rule everything out. Get copies of all test results you get so that you will have them for future reference to other doctors you may see.


Not sure how much help I have been but wanted you to know that we are all here for you and willing to listen.

Take Care,
Paula