My Symptoms UnDX

[slightlybroken]

These are my symptoms

Blurred Vision –left eye is blurred and doesn’t react to the light as fast as the right.

Double Vision –becomes worse by the end of the day, double vision caused from weakness in the muscles that line up the both eyes. Opthamalogist believed my double vision and blurred vision could be caused from something going on deeper on the optical nerve where he couldn't see.

Lock Jaw –jaws lock up anywhere from hours, to the most a week. When checked for this in the late 90’s doctors found no problem with bone structure.

Stabbing Pain – around jaw area, affects ear and the side of my face.

Weakness – left side affected (left arm &leg.) Occasionally, right leg is affected but not to the extent as left. I have dropped things unexpectedly out of my left hand.

Numbness –patches of numbness on the left arm, leg is more affected around toes and ankles, and bottoms of heals. Numbness feels similar to swelling but there is no swelling. The skin has some sensation but it feels numb in the muscle.

Pin & Needles –left arm, left leg, and right leg. The feelings come and go and last for minutes to hours.

Burning Sensation –feels deep in the muscle of left arm, left leg in thigh area and other places, and right leg in thigh area.

Muscle Spasms –has happened in left arm & leg, and a little in right leg. It can be a feeling of tightness all the way to contorting the appendage at the joint and drawing it in. Muscles will feel flexed even in a relaxed state.

Shoulder Pain – left arm shoulder pain from the joint.

Bladder Urgency –when I have to go, I got to go now.

Stress Incontinence –lose bladder control under coughing or sneezing, even if I just went to the bathroom.

Bowel Urgency – when I have to go, I got to go now. There is no warning.

Bowel Incontinence –can not hold my bowels under urgency.

Electric Shock Sensations – sensations down arms and legs and occasionally down back starting at the base of the skull.

Shaking Legs – when bending my legs to stand or sit my legs begin to shake uncontrollably or if I’ve been on my legs too long. My leg will shake when I try to bend my toes in a rhythmic shake.

Tremor in Hands – this happens occasionally when I go to reach for something.

Fatigue –I don’t feel sleepy but I do not have energy to do anything. Muscles are tired.

Cognitive –word finding, memory, short term memory lose.

Balance Issues – I have problems with balance and will go side-ways. The room may feel on occasion that it is spinning. I’ve had trouble with this when I can’t feel my feet as well.

Heat Sensitivity –after being exposed to heat I feel sick and fatigued. My legs will feel weak. I will get diarrhea as well. I will not be able to think straight either.

Bowel Issues –I have diarrhea a lot. When I have a normal bowel movement I have problems with going.

Urinating Issues –sometimes I feel like I have problems emptying out my bladder. My urine flow will stop, then I sit for awhile and it will start up again.

I've had a complete blood panel, EEG, SEP, LP, EMG and MRI. I've been tested for Lupus & Lyme. This will be the 2nd neuro I've went to about my symptoms. The first neuro noticed I had clonus reflexes in my ankle and in my wrist on the left side. The only test that has came up bad was the MRI's which showed 4-5 small lesions in the white matter of my brain. They also noticed a something in the cervical spine but said it was too small to see. One radiologist believed it was early demyelinating disease. My first neurologist said they were non-specific. These MRI's were done on a 1.3T high field open MRI. The reason I quit going to the first doc was because of no answers after 6 months and he kept sending me to this MRI machine. I'm going to get my reports eventually.

My above symptoms will last for 4-6 weeks, on average, then I'll have a week of feeling normal, then go back into the symptoms. Not all of these symptoms happen at once and some will occur and then disappear. I will get the muscle spasms and weakness about everytime.

I beleive this could be MS or another autoimmune. Autoimmune diseases are extremely common in my family. I guess you could say I'm nervous about my appointment with neuro #2. I just want some answers at this point since I've had these on-going symptoms for almost a year. I made a timeline as well. My GP, Opthamologist believes it's MS. My mother is a nurse and she also thinks this. I just can't seem to find a neuro that will DX me with anything.

Does this sound like MS? Is there any other autoimmune disease that would cause these problems?

[slightlybroken]

Thanks for all the advice. It really help knowing that there are other people out there going through the same issues. I guess you could say I'm a little nervous about meeting my new neuro. This forum has helped a lot.

Deb - it's funny that you mentioned Sjogrens. My mother has Sjogrens. When she was first DX most docotrs around here didn't even know what it was or how to treat. My mother hasn't had any neurological problems with her disease so far. Thank God!

I was tested in the late 90's for Sjogrens and I did have some characteristics of the disease but the ENT doc said that the lymphocyte infiltration wasn't enough for them to say I had Sjogrens.

[Deb61]

You have a lot of MS symptoms.  I have almost of the symptoms you mentioned with an exception of just a couple, and was just diagnosed.

I had a negative MRI to begin with because of the low magnet open MRI machine without contrast.  Yes, according to my neuro, the machine matters.  My second MRI was positive.  My third MRI showed more lesions, and I was diagnosed.

Another MS mimic that's autoimmune is Sjogren's--it will also cause white matter lesions.  This had to be ruled out before I had my diagnosis.  As far as I know, it doesn't cause heat sensitivity issues, however.  

I agree with ess- you need a machine with a strong magnet, possibly an LP, and an EVP.  You may ask your doctor also about an VEP (I think that's what it is--evoked potential) to find a optic nerve problem, too.

Also, make sure that you bring in the MRI on CD to your doctor's office.  You may even mention this to the MRI people before your visit to see if they can load it on to their software to make the split screen thing that they did for me for comparing the two (I really don't know if it's possible, though).  He can compare your last MRI with the one you'll probably get and see an increase in lesions, which may be needed to meet MacDonald's criteria for MS.  The "multiple" in sclerosis (scarring) must be evident for a diagnosis.

Best of wishes,
Deb      

[floridamom2]

Your path sounds ALOT like mine and so does your relapse hx.  My cycles run about 3-4 weeks of bad and 1-2 of good.  Have no answers yet but you can read my journal that shows all the tests I have had so far and where I am on the spectrum of diagnosis.

The thing that hits me about you is the lesions on your MRI - I have none.  I vote for a new MS specialist for you - do some research and find a good one before making the move.  I know it is hard to keep looking for answers ad especially hard to keep opening yourself up to being treated badly by the weanie neuros but we are all here behind you and most all of us here have been excatly where you are right now.  Read Quix's story on her journal too.  It gives me hope that I will someday have an answer that makes sense and be able to move out of limboland!

Big Hugs and I will be thinking of you!
Kristin

[essdipity]

Sorry, I missed seeing some of the tests you've had. My MRI comments still stand.

ess

[essdipity]

You have a lot of MS symptoms. You don't report having had rule-out blood work, an LP or Evoked Potentials. If you neruo won't order these, then a new nuro is way overdo. Also, an open MRI with low-strength magnet is not ideal for diagnosing MS. If your neuro is holding back because of your MRI, insist on a better machine.

Good luck,
ess