Hi everyone,
I'm Hilie, 29.
I just need some ears to listen. I'm frustrated, and I don't know where to go. After years of enduring face pain and numbness I was diagnosed with trigeminal neuralgia. My neurologist diagnosed me after an MRI of my brain was ok. The treatment was amitriptyline. I was on it, and it didn't help. So I was put on nortriptyline, and when that didn't help he suggested botox injections. I was not ready to go there because I was sure there were other medications available. I moved soon after the suggestion for botox and went to a new GP who would not listen to my concerns, after a year, she finally referred me to a new neurologist. My problems have gone from periodic face pain and migraines, to all over numbness/tingling(back, arms, legs, and feet), muscle spams(the kind that you can physically see), tachycardia, and brain fog. I can't form a sentence on some days. So finally after all this time of being switched between zoloft and amitriptyline, switched doctors. My new GP immediately said it sounded like MS, and I got referred to a pain specialist.

Here's where things got weird. I went to the pain specialist today, and told him all my problems. I didn't leave anything out. I told him that I once had a trigeminal neuralgia diagnosis, but now I feel like it's a completely different problem altogether. I showed him my hands shaking and he said that it's more likely that I have several different conditions, instead of just one thing causing them all. I'm only 29, so I see how he can think that, but I've been having these problems for 10 years now and the treatments for trigeminal neuralgia are not working. He told me to increase Gabapentin, and that we'd do a gamma knife surgery. I feel hopeless right now, because he just didn't listen. My problems have progressed very rapidly over the last 5 months. So do I continue this procedure, and just hope that he's right? Or am I really crazy to think that it's something more? I was hospitalized in March with my heart rate being over 150 and it was determined that it was not cardiac related. I've also never had an actual neurological exam. The neurologist I saw a few years ago didn't do one, he just said I was young and my MRI(of my head) looked healthy.

I'm also told him that I had a neurology appointment coming up in the next few weeks and I wanted to see what he said, and he just blew me off and pushed for the surgery. I'm really scared, and I'm hurting, I feel like no one is listening to me.

Welcome hiliemoon.

Someone will be along to help.

So you only had an MRI of your head so far?

Seems like they would now do full spine with the arms & legs symptoms?
And why would dr mention MS without more testing?

Have you considered any alternative care?
Perhaps expert chiropractor, acupuncture or naturopathic care?

I never heard of MS til the doctor mentioned it after a lyme test came back negative. He was willing to give me long term antibiotics, even with the test coming back negative, but I said no, since I haven't had a tick bite in probably 2 years.

I was hoping that acupuncture would be something the pain doctor would suggest since it was something his office offers. I only had the one MRI two years ago, before the numbness got widespread. I'm crossing my fingers that at my neuro appointment he will help me get to the bottom of it, or at least order more tests.

Hi hiliemoon,

I hear you loud and clear, and so feel for you, the not knowing, things getting worse and new symptoms plus dingleberry Dr's....very upsetting.

Sounds as though you have several things going on, now where is this all coming from?

Why on earth is no one ordering a full spine MRI, I think this is what needs to be done and I tell you I was so upset I asked my Dr for one and she finally did it.

Thing is and this is SO frustrating, when a Dr does not know what's going on they try different things, a case of elimination and hope something works.

I'm going through something very similar, had a terrible Dr who did nothing until my pain had been horrendous...and I can stand pain...for months, I have neck and shoulder problems, then the pain/spasms (spasms are awful) went into my left arm/fingers, lower back then left leg and toe so it's moving.

I also have migraines.

Been to chiropractor...made it all worse, 2 rounds of PT, traction and massage, the massage eventually gave me some relief but only for a day.

I also have neuro problems, brain fog etc but had a bad concussion.

MRI's are not fool proof, it amazes me when Dr's try to get us to believe it, so many times something just cannot be seen on them.

I just think more tests need to be done for you, can you ask if you can have them done?

One Dr also thought I had fibromyalgia, has anyone mentioned this to you? not saying that's what it is though.

Hang in there, someone else will be along to help you...

Welcome Hilie,

Personally I would never rush into any kind of surgery. Unless "emergency" surgery, it should be a last resort in my opinion. Especially when you say the doc did not listen to you. I would strongly suggest that you see the neurologist before you make any decisions. Don't be "pushed" into anything. Seek additional opinions and then make the decision for yourself without feeling pressured.

Wishing you the best. Keep us posted.

Hi Hiliemoon,

Been where you are, know the feelings of frustration when no one seems to be listening.

I agree you should ask for an MRI of cervical, thoracic & lumbar spine. Depending on the results, maybe a lumbar puncture to test for inflammatory markers. Have you had any bloodwork to check for autoimmune causes? The high heart rate, has it only happened once? Do you feel dizzy when you stand up? Just curious...the autonomic nerves can be affected with neuropathy.

You may want to ask for a referral to a teaching hospital.They are willing to do more testing.
Hope you find some answers soon.

Hello Hiliemoon,

I agree with the others! Why wouldn't they order a full spine MRI?

When you get your results from the MRI, have you ever considered Chiropractic Care?

I didn't believe in them at the beginning of my journey. Thought they were a money making scheme ... how I was soo wrong.

i go to a regular chiropractor for full spine adjustments. I also go to a chiropractor who specializes in the cervical spine. He took xrays of my neck sitting upright in a chair. What a difference that made.

He was able to see how my cervical spine sits when I am sitting. Besides poor posture that I am now trying to correct, he found that my numbness and tingling in my face and constant ringing in my ears was due to my advanced degeneration of my vertebrea. I have impingement on my spinal cord and the facial nerve #8.

I go to him now for monthly maintenance, as I do the same with my regular chiropractor. It is soo important to be aligned to let the body try and heal itself.

Once a synic and now a believer.

Praying you find relieve and some answers to your health issues.

We are all in the same boat just with different sails ... come back and let us know how you are doing.

God Bless you

Ditto on the X-ray's being done sitting up, things can be seen that can look completely different lying down.

Same goes for the MRI's, usually we are lying down, my physiatrist said when lying down for eg herniated discs can look different, they can pull away, relax so to speak, a more accurate way is to stand up which makes complete sense but don't think they are done standing up often.

X-rays though don't show as much as an MRI then they can still not be accurate so it's a game of different tests.

Chiro's can be great, unfortunately for me it made my neck/back worse so have to be careful.

Lyme Disease tests are VERY often wrong. Do NOT lightly dismiss the doctors suggestion to try a course of antibiotics because LD is an illness that is CLINICALLY diagnosed. That means because the tests can be so wildly inaccurate, the doctor makes the diagnosis by listening to your symptoms and other issues like you got bit by a tick 2 yrs ago.

Please, a course of antibiotics is much less risky then surgery. Also, LD can explain aLot of what is happening to you AND a tick bite can give you many illnesses, not only LD but bartonella, erlichiosis, etc. Also, the longer you wait to treat, the more damage is being done to your body and the harder it is to cure.

It took too long for me to get a diagnosis and now my neuropathy and many other issues are not curable, only the symptoms can be managed.

read about symptoms and treatment from a world renowned doc who has treated Lyme patients for almost 30 yrs.
www.lymenet.org/BurrGuide200810.pdf


professional LD site
www.ilads.org