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[emschick]

I am 36 years old and have a long history of medical conditions. Seems there is always a diagnosis of some type. In 2003 I was told  by my GP I have trigeminal neuralgia. Later that year was told I have fibromyalgia and IBS. One day I had a migraine and my vision stayed very blurry in my right eye for a month.

Trigeminal neuralgia started out on the right side of my face and I only had a couple of attacks a year with it. Just the past couple of years have I been getting more attacks and they last for much longer. At the first of this year the pain swapped sides. Now it is on the left side and still sometimes on the right too just not at the same time. I thought it was time to put an end to this aweful pain so I asked my GP to send me to a neurosurgeon. Forgot to mention I saw a neurologist in the beginning. Anyway he was a real jerk.

So the doc sets me up with a neurosurgeon this past March. Before I went I had an MRI of the brain only. He tells me that at my age it is very unusual to present with trigeminal neuralgia especially bilateral without have MS. I was devistated. Then he wanted me to come back in 2 months after I have a LP and blood test for Thyroid profile. I also have had thyroidectomy and it has really been wacked out. So I do all these things and everything is negative and normal. I go back to him and he says he could not possibly do the nerve decompression because of MS. I go back to my GP and asked that she set me up for a second opinion. In the meantime,

I decided that I would get copies of all my medical records and research this for myself. Before I receive my records I have my second opinion. This guy is a real uncompassionate person. He was rude and never lay a hand on me plus did not have any of my records yet from the other docs. He states he agrees with the first dr and that he also thought that I would not even be a candidate for the gamma knife because of MS. Keep in mind I do not have the diagnosis yet, even to this day.On the way home from this visit I call my GP's office and leave a message. The nurse calls me back the next day and states that there is nothing that my dr can do for me. She says that I should just check out 2 websites and maybe I can figure out what to do on my own.

At this point I am totally frustrated and depressed, but I get on the websites and I educate myself on everything I possibly can about diagnosing MS. Several days after seeing the 2nd surgeon I received my records from the first surgeon. He states several things about reflexes and sensation loss. He never mentioned these things to me at all.

Then my GP calls me herself because she received the letter from the 2nd opinion. She discusses what we should do next and sets me up with physical therapy on my face. Last friday I had another MRI this time brain and spinal cord only they did not use contrast which I was a little concerned about. GP's nurse called today and set up an appointment for Thursday to discuss results.

Has anyone else had this hard of a time to figure out what is going on? I am so tired of the not knowing it is driving me crazy. Every day I feel like I have been hit by a bus because I am so stiff and achy. My right arm has started to give my progressively more trouble and I have difficulty picking up the slightest things. Fatigue is absolutely aweful. Can anyone Help me understand what is going on?

[santana8]

Well, looks like you have gotten some good advise already, but I wanted to say hello and welcome to the forum.  I hope you will stick around here with us!!!!!

~Santana~

[emschick]

You are really educated about this illness I can see. You must have been through a lot and did a lot of research.

I am an EMT at Cullman EMS which is the 911 provider for this county I live in.

The thyroid disease (Grave's Disease) is autoimmune and my thyroidectomy was done in 1998 or 99.

The trouble I am having with my right arm is sort of complicated to explain, but here goes...
I have had pain in my elbow since November but it was very mild. It is actually in the muscle.
Lately it has gotten much much worse so that it is almost impossible to pick up objects with my right arm. This is very hard for me seeing that I am a right handed person and usually do everything with my right hand.
I was even having difficulty bringing a drink to my mouth.

As you probably read above my dr visit wasn't a total waste of time because she gave trigger point injections of lidocaine in the muscles in my forearm which she found numerous knotting and said the lidocaine would reduce inflamation.

Personally right now I am not feeling that it did any good but I am sure it will take a little while. Ha Ha. Would be nice to have instant relief for once.

Thank you so much for your help and if you dont mind I will probably hit you up again once I get all my dates together.

Kathey

[emschick]

Hey Shelly, I did not read your posting before my appointment but it was a useless appointment anyway. I will get out my records and narrow down the approximate onset of each problem I have had and let you know what I come up with. I have been so frustrated with the so-called medical personnel around here. Sorry I did not read earlier. This is very helpful and I could use a few good minds working together.

[emschick]

Thanks!!

[humming4u]

i will keep you in mind and prayer.try to keep the line of commmunication open with hubby,sometimes its hard for us when were suffering, we shut down

[emschick]

Thank you so much for your support and willingness to help. Turns out after visit with the dr today that the radiologist did not look for anything related to MS only looked at bones and sinuses and discs ect. I am very frustrated with the medical competency of people around this area. Now the dr had to tell them to read films again and she will call. I told her about my arm and she gave me trigger point shots of lidocaine and told me that may be carpal tunnel. She says I should wear a brace all the time on my right wrist and at night on both to cut down on the tingling and numbness????
Well thanks to everyone and I will try to keep you posted.
BTW: My husband doesn't get this stuff so he gets upset with me for being sick and since I am not working and haven't received any of my short term disability he is freaking out because my check was $64.00 this is after all deductions are taken out for insurance and stuff like that. Anyway keep me in mind when you pray. This has not been a good week.

[humming4u]

your story is almost the same as mine.I don't have a dx of TN, but quix helped me figure out it could be  atypical, bilateral TN.I did have a possiable/proable Ms dx for awhile , but sp was negative,and 2ond MRI, and 2ond nero(real jerk too! imagine that), said no its just your fibro, which i have been dxed with for 10 years, and never suffered as much as what began and continues daily, almost 3 years ago, terrible face and head pain,and now nero issues. i'm in a holding pattern right now, trying to get in to see a infectious disease specialist, and on the look out for a new nero.
I know exactally how you feel, and i'm so sorry for your struggles too.
this forum is great, stay                           humming

[essdipity]

I sure hope this helps you! Great plan of attack, Shelly!

ess

[sllowe]

Ok, well Thursday is the day w/the GP right?

You want help w/your thoughts?  Possibly getting together an order of events in a timeline style fashion? Then providing a copy of it the GP?  This we can do.....

Just say the word. Can we, or you work on something like this:

Symptoms Past (put estimated year here)
        -migraine proceeded by blurry vision for 1 month
        -stiff and achy - daily
        -right arm difficulty picking up the slightest things
        -fatigue

2003 diagnosed with trigeminal neuralgia
  -right and left side of face couple times a year

2003 diagnosed with fibromyalgia and IBS

2008 MRI (do you have this report? Can you get it?)

(2008?) Neurosurgeon documents reflexes and sensation loss

EMSchick,
Obviously, we've got to drill down on this, but I'm hoping this helps to put it in some perspective for you and the Dr. so you can walk out of that office on Thursday with a plan of action.

ttys,
Shelly

[Quixotic1]

Hey are you an EMS?  Welcome to the forum.  What a mess you are in that you are being denied medical care because of a diagnosis you don't even yet have!  We all understand the horrible quandries that arise when you are in the undagnosed.  I hope we can gice you some support and maybe some info.  

Yes, neurologists can be jerks.  Even when they are right, they can be jerks.  Fav topic around here.

You have severe fatigue, history of thyroid disease (autoimmune??) bilateral severe face pain, clumsiness  (what kind of increasing trouble with your right arm?), stiff and achey.  You have IBS and have been given the diagnosis of Fibro - by whom?  Have you seen a rheumatologist?

I understand why they are talking about MS.  It would be very unusual to have bilateral TN except in MS.  And because in MS the pain is caused by a lesion on the 5th cranial nerve and not by nerve compression, surgery is not a solution.  So, I understand the neurosurgeon's view and applaud him for knowing this.  However, having had MS raised as a possibility, you need to be seeing a neurologist who specializing in MS and can make sure the work up is done properly.

When they did the MRI for the Trigeminal neuralgia it is quite posssible they did not do the proper technique for diagnosing MS.  This is maybe the reason they want to repeat the MRI.  But, the use of contrast is required as part of the diagnostic MS MRI protocol, as is small, contiguous 3mm or less slices, various techniques and a minimum MRI strength of 1.0T.  You'd think that would be automatic, but we heard just this week from someone who had their MRI on a 0.25T!!!!

It seems that you need a concerted work up for MS.  I hope this last MRI was done correctly.  Talk to your GP about another Neurologist who isn't a jerk.  We have recommendations about finding them.  You should see a rheumatologist.  MS occurs often along with Fibro.  Several people here have that dual diagnosis.  Also, there is more IBS in people with MS.  Well, not really more IBS, but certainly more trouble with their IBS.  MS plays with bowel and bladder function also.

I have a whole bunch more, but today is not a good day at the computer.  I can't focus my thoughts.  I hope others will be by soon to talk.

Welcome again,

Quix