MS? Lupus? Undiagnosed symptoms

[skc04]

Almost 4 years ago - I noticed blurred/dim vision in my right eye - after much testing, was told optic neuritis, then maybe optic neuroretinitis - has never improved - still the same after 4 years. Through the use of photography - the doctors say it is still ongoing as they can see changes in the optic nerve inflammation - leading them to believe it is some kind of underlying disease. In addition, I have had several other symptoms including joint pain, debilitating fatigue, headache, migraines, IBS, high blood pressure ( I am 28 years old and have taught fitness classes for 10 years - eat well and exercise alot and have never had a problem with blood pressure), dizziness and blurred vision after exercise that lasts about 10 min. and goes away, extremities like fingers and toes turning white when cold, and other random symptoms. I have had several MRI's, lumbar punctures, bloodwork, and almost every other test imaginable ( tested for all STD's, HIV, Lyme Disease, Cat scratch disease, thyroid, diabetes, and others....)- all showing no signs of any disease. I find it difficult to get any answers - and these symptoms are starting to get in the way of work as well as my life - any information or ideas would be helpful - thank you!

[Nilyta]

I was diagnosed on March of this year at 25 after 2 months of study.I've never had optic neuritis, just some lessions on my spine and one little one on the brain on the other hand my spinal fluid was normal and thats why there were many confusion and was hard to diagnosed. Finally a specialist on Ms confirmed it even though I had no spinal fluid abnormalities due to all my other symptoms he explained that years ago people wouldnt have the chance of getting mri done and since the fluid came normal people were not diagnosed on time. It could be very frustrating because you think that time is running by and meanwhile you're not getting treatment. Fortunately during those months of waiting I got pregnant of my first child which is due on Nov and Im happy. I also had ssa protein consistent with other inmune disease like lupus and sygrogen syndrome. I have no other symptoms related with that so my doctor explained that is normal to have that protein on MS..  The idea at first is frightening but we have so much to live and to thank god for that it acually becomes something insignificant. MS has helped me appreciate more life and now that im going to be a mom even more.. My recommendation is that whatever you end up being diagnosed with... just take it with a positive attitude and that will help you get thru it. Best of Luck from Miami

[Terrihoward]

I was diagnosed with MS 14 years ago. I have had optic neuritis and believe me when I say if you have it youknow it! first it is big pain with eye movement. did you know that no matter how hard you try not to, your eyes move! After a few days of that you get a foggy white spot somewhere in your field of vision. Some are small enough to see around and some you can't. There is more than one type of MS so it certainly doesn't have to be the end of fun. I take shots and do pretty well most of the time but I didn't believe I had it either. I took massive doses of antibiotics hoping it was lymes. It wasn't. I wonder if they just name it ms if they see spots on the mri and no idea how they got there. Sure symptoms are there but it seems to me they could fit many different neurological conditions. Well whatever, the shots have kept the eye thing from getting so bad that i get that big blind spot and my funks don't seem to last as long. So i say maybe you should ask about avonex. they make you feel like **** for about a day and a half after but it is way better thatn some of the other joyful things that happen with ms!

[stacysnette]

I have had some of the same symptoms, i am 27 yrs old with 4 children. STarted getting burning sensations in my head, pain in my face, severe joint pain, and a feeling in my throat like someone was applying pressure in the front of my neck. My right eye continuosly jumps, and all of this lasted for about 3mths, then went away. Now they are all starting over again. I have had every blood test known to man, and mri's, and ct scans, and even nerve conductions studies.  I find sometime when i pass my bowels it hurts in my legs as well.  I don't know what else to do.

[Carol in PA]

skc04:
The symptoms that you list are consistant with Lyme Disease.

Symptoms of Lyme Disease
http://www.canlyme.com/patsymptoms.html

The usual Lyme tests are so inaccurate, that a diagnosis should be made by looking at the patient's symptoms.
This is known as a "clinical diagnosis."

So, if your lab test for Lyme was negative, it doesn't mean squat.

The Canadian Lyme site above has alot of good information.

LymeNet.org has a support group that can answer questions for you, and can help you locate a physician who is experienced at diagnosing and treating Lyme.
http://flash.lymenet.org/ubb/ultimatebb.php

Wishing you the best,
Carol

[zayny]

how much did u follow up on the IBS? different intestinal problems can be overlooked or underestimated, and with a healthy diet and routine, maybe malabsorption is to blame. have u checked all of your vitamin levels? the simplest things can cause some of the nastiest problems and they're often overlooked.

i'm 22 and had pernicious anemia for years before it was figured out. it nearly killed me because my blood test results seemed normal, they just weren't normal for me.

MS, lupus and thyroid problems are all autoimmune disorders. they can be very difficult to diagnose. maybe try googling autoimmune diseases and cross reference your symptoms with what you find... that's how i was eventually diagnosed. after years of seeing specialists, i told my dr what to look for and it saved my life.

good luck!

[bengalcats]

I AM UNDER THE IMPRESSION THAT PEOPLE WHO HAVE MS ALSO HAVE OPTIC NEURITIS, BUT YOU WERE ALREADY CHECKED FOR MS CORRECT? IT PROBABLY WOULD HAVE SHOWN UP IN YOUR SPINAL TAP. I BELIEVE THAT I HAVE MS BUT HAVE NOT BEEN DX WITH IT YET, STILL WAITING FOR MY APT. I HAVE HAD VISUAL PROBLEMS FOR MANY YEARS, DID YOUR DR SAY WHY YOU WOULD CONTINUE TO HAVE OPTIC NEURITIS? DID YOU DO SOME RESEARCH ON IT?

[NoAspartame]

Have you eliminated food additives (such as aspartame) from your diet that may be causing this?

I went to four MD's and none of them suggested that perhaps journaling my food intake might be appropriate.  Turns out that aspartame (NutraSweet, Equal) caused me many problems similar to yours.  This lasted for nearly 10 years before I figured it out myself.