MS, MG or Crazy - Oh My! - Neuromuscular Diseases Message Board

frustrated grl · 03-14-2005, 11:28 AM

As many of you know - nerve problems are some of the hardest to diagnose, so that is why I am writing: to see how many of you have gone through similar things and whether or not I am doing all I can do to help myself. So here is my story.... 4 years ago I was really stressed out and I started getting classic Trigeminal Neuralgia signs of stabbing pains in the left side of my face and migraines. I recently had moved back to the Midwest and was faced with high humidity and heat in the summer and high stress - which both exacerbated my symptoms. My Neurologist treated me for TN and they started getting better after about 6 months. Granted I am a very physically fit, women in my late twenties - this diagnosis was fine with me and I got through it with only occasional twinges and pin pricks now and then. 2 years later I was pregnant with my first child and I started getting double vision in my last trimester. When my blood pressure shot up right at the end of the pregnancy we thought it was all just pre-eclampsia and it would go away and now more than a year later I still have the double vision and trigeminal pains and no neuro or opthamalogical neuro can figure it out. Neither MG or MS is conclusive because all of my tests have been fine for the most part but I still have double vision that occurs suddenly, migraines and problems focusing. My bp finally went down after about 6 months post-pregnancy. I am barely 30 and I am scared to drive and frustrated that no one can help. Any ideas on what else I can do? Go to Mayo? I have done multiple MRI's, had my Ach bloodwork done, had the horrendous needles in the arm nerve test and my eyes and eye nerves are normal.
Why would a healthy 30 year old woman have two totally independant nerve problems and neither be related as one neuro suggested. Ugh! I am sick of double vision, shotty nerves and stress and heat making everything worse!
And spring is just around the corner!

Any suggestions?

jmsimon · 03-15-2005, 10:29 AM

Hi FG, I too have been going through similar symptoms. I get shocks, tingling and numbness through my arms and my face, and also numbness in my legs, as well as weakness. I've had an EMG (nerve test) on my arms and that came out fine, I've had MRI's and brain scans and they all seem to come out fine. ALthough I have a venous angioma in my brain, but the neurologist seems to think thats not causing any of this. I've been to several different dr's and they all say that the symptoms don't go together. Although some say its consistant with MS, I just went back to the neuro today and he is checking for MG. My pupils have dilating opposite each other several times in the past few months and no one seems to be able to figure this out. I am so frustrated as well. I'm sorry that you are having these problems, if I come across anything I will let you know!!! Good Luck!!

ncgirl88 · 03-20-2005, 05:49 PM

FrustratedGirl - take it from another FrustratedGirl - I believe you are suffering from tick borne illness. I have Lyme, Babesia and Ehrlichia all transmitted from a tick most likely the size of this . I don't remember being bitten - I never had a Bull's Eye Rash.

I have migraines from He**, I had the double vision, gastro problems, my temperature ran under normal, chest pains, problems breathing, my blood pressure was/is all over the place, hormones all wacked out, weight loss for me, heavy menstrual bleeding, symptoms all get worse during that time of the month...truly I cannot list every symptom here or my post would be a mile long.

Testing for lyme and tick borne coinfections is hit of miss at best. I even went through John's Hopkins and tested negative for everything. It was not until I went to an LLMD (lyme literate M.D.) and had my blood sent to IgeneX Labs in Palo Alto, CA that I got a Western Blot back that was extremely positive for lyme, Babesia and Ehrlichia. I had been tested twice before - once through LabCorp and once through Quest - they had reported negative titers for lyme.

The babesia is like malaria and attacks red blood cells, the ehrlichia attacks the white blood cells, and the lyme all the organs. I was really sick but all the doctors kept telling me I was fine.

Go check out the lyme thread here on Healthboards and read about it. If you want to find an LLMD in your area post and someone will have some suggestions. You just want to make sure if this is what you are dealing with that you get yourself to a respected LLMD so you can get proper treatment. Treatment is tricky when coinfections are involved and should be done in a proper sequence.

Lyme and tick borne illness is everywhere not just in the NE like the wonderful CDC leads everyone to believe. Lyme is called the "Great Imitator" because it mimicks so many diseases including MS, Lou Gerigs, Parkinsons, Crohn's, Fibromyalgia/CFS - it even puts lesions on the brain like MS - I know there are tons of people out there misdiagnosed with MS as I type this.

Take care and I hope you get answers soon. Do not give up on figuring out what is wrong. You know your body better than anyone. I cannot tell you out of the 15+ doctors I saw in a 6 month period how many wanted to chaulk it up to stress...how wrong they all were.

Lyme struck me hardest after a move. As well, many find it rears its ugly head after a pregnancy when a woman's resistance is low. Many believe it can be passed through the placenta and breast milk...so if you suspect it could be an issue get checked out and keep an eye on your child.

-ncgirl88