I am not sure what to do....very frustrated, and need some advice

[bumblebee55]

Hello; I have been here on and off for almost three years. I am not dx yet, but have been told "possible" MS according to my symptoms. Have had one brain scan (without) contrast (brain scan neg for lesions)...will be having a full MRI, from brain to lower spine in two weeks. I HATE going to the dr. so have been living with my symptoms for the last three years. Six months ago, had a new series of symptoms (severe twitching in feet and lower leg with accompaning leg weakness) that prompted me to go back to the dr, despite my reluctance) and a new neurologist decided I needed more extensive testing. So far, I had an EMG, VEP, and will be having the full series MRI as mentioned above. In July I will be having a "sleep deprived" EEG. I have not heard if there were any abnormalities as I will be having a neuro consult as soon as the EEG is completed and he will discuss all the test results at that time.

For the last month I have MORE new symptoms, but don't know if I should go to my GP, or wait until the MRI is completed. I have a strange, JABBING pain in the right side of my face/head. When I accidently touched my cheek, my skin "hurt." Once in a while, I get these shooting, jabbing pains in my ear drum, and sometimes it shoots down to my lower jaw. At first I thought perhaps I was having sinus problems, but have had sinus problems before, and this feels very different. The pain is very intense, but only lasts for seconds, and then disappears, and for no apparent reason, comes back again. The fatique I am experiencing right now is mind boggling; i can't get enough sleep. My left thumb has been twitching, on and off, for almost three days. The "twitching" or worm like feeling in my leg is back again, after having disappeared for awhile.

My question is: is there anything the dr. can give me for this intense face pain (that comes and goes) I have taken OTC pain medication with no relief, AND WHAT THE HECK IS THIS PAIN ANYWAY? or should I wait until I see the neuro (who is in another province which is why I have to wait so long between tests)

The reason I don't go to dr.'s is because I have gone before, and they shrug their shoulders and say, " Don't know...you just might be "one" of those people that have strange neuro symptoms with no known reasons" okay, so it must be all in my head....so I stopped going...my theory...if I wait long enough, it will go away..but this strange pain is almost more than I can stand at the moment.

Any thoughts?

Thanks for any help anyone can offer.

[heliotrope]

What you're describing sounds like it isn't inflammation pain (which is what OTC generally treats), but nerve pain. Different issue, different med, unfortunately. Maybe your PCP can suggest something and save you a trip.

[Shashi]

Hi,

The pain you are describing sounds like trigeminal neuralgia (TN). It can be quite horrible. Ask your doctor for a prescription for Neurontin (gabapentin) or Lyrica or something like that.

I hope you get some relief and answers to your problems soon.

Hugs,

Lisa

[Lendi]

The tests are hard, I know. So sorry you have cause to go through them. Wishing you much luck in getting it all figured out, though. It sounds like your neuro is on top of things.

[Redwings]

The reason I don't go to dr.'s is because I have gone before, and they shrug their shoulders and say, " Don't know...you just might be "one" of those people that have strange neuro symptoms with no known reasons"

That might have been the case before, but it sounds like you have a neurologist now who is doing an extensive workup. Maybe you can take advantage of that.

What you're describing sounds like it could be trigeminal neuralgia. (Google it and go to reputable medical authority sites and see if the description sounds like what you're experiencing.) Since trigeminal neuralgia is a neurological condition, it would be appropriate to call your neurologist, report the new symptom and ask what you should do. With the amount of pain you're having, you shouldn't wait for a routine visit or let's-go-over-the-test-results consult to report a new problem.

Ideally, the neuro should examine you to make a proper diagnosis and recommend appropriate treatment options (there are medications that can be very effective for relieving nerve pain). If it isn't possible for the neuro to see you before your scheduled visit, s/he should recommend another doctor who can see you on a more timely basis. But you have to make the first move.

[mjan]

First of all, I am sorry for all you are going through. Some of your jabbing & twitching pains seems familiar.

I have horrible toothache type pain around teeth/tooth and jaw. When I see my dentist he makes sure its NOT my teeth and it never is. I do think its part of trigeminal neuralgia. I used to take gabepentin for something else but I am not now. I have no idea if it was helping some..it may have.

But..since the pain is short spurts, even tho intense, I do not take more than I am on already which is RX Diclofenac for my lower back issues. It may be helping some as well.

Just wanted you to know its more common than not, and for me anyway, has not gotten worse except 1 day when in the hospital I had it for several days..the worst pain ever. I was already on IV steroids which may have helped.

Good luck..hope you get relief.

Hugs, Jan

[terie-tk]

This sounds very similar to me before .....

I have a strange, JABBING pain in the right side of my face/head. When I accidently touched my cheek, my skin "hurt." Once in a while, I get these shooting, jabbing pains in my ear drum, and sometimes it shoots down to my lower jaw.

......my dx. I was recovering from Optic Neuritis and I got almost the same thing on the side of my head . Same side that my eye was effected. It was a horrible pain, unlike a headache. It seemed no medication helped except large doses of NSAIDS like every 4-6hrs . I was sent to a Neuro and he said it was from stress.....

My MRI at that time was negative except for Optic Neuritis.

I went to work with an Ice Pack on the side of my head and took Ibuprofen like every 4 hrs, (I know it's not recommended but I was desperate) & that was the only thing that helped me. I know more now...

Hang in there, I hope you get relief.