[njmama09]

Sorry if this is long, I want to provide background to be as informative as possible.

Background, when I hit 18 everything changed for me. My back started to degenerate and I herniated a few disks, I had knee pain too. I started gaining weight. I lost energy. I developed "floaters" in my eyes and at 1 point, optic neuritis for which I was given a short course of steriods. I had very bad, constant diarrhea (I lost weight during these periods).

Each thing was attributed to separate causes. Cheerleading and horseback riding for the back and knees, weight gain and fatigue to hormones and Polycystic ovaries and the floaters were classified as PVD (posterior vitreous detachment). Diarrhea was actually misdiagnosed as Crohn's until I saw a new doctor 2 years ago and we discovered it was really just severe lactose intolerance. All the rest were dismissed by doctors basically.

So now I'm 30, overweight with no success dieting and have had 2 micodiskectomies in my back.

Last April I actually had a lumbar disk (L5-S1) fragment and now my achilles tendon on the left side is weak and I have a drop foot because of it.

A year ago started with "flashing" in the eyes. Like a strobe light in the corners of my eyes. It was only at night, and only when looking at something red or orange. Wierd huh? Now, it's all the time in my left eye and intermittent in the right eye. Saw 2 opthamologists and both still say it's PVD. They admit I'm young for this problem, but "its a natural process"

A few months ago, I had really bad neck pain on the left and had an Xray, which of course was negative. My PCP said it was muscle strain and gave me Flexeril and Iburofen. It eventually went away.

About 6 weeks ago, I noticed my big toe on my left foot was twitching. Moving back and forth by itself. Then within a week, I started to feel a like someone was plucking on my sciatic nerve, a deep "twang-ing" feeling and a vibration all the time- like my foot was in on the floorboard of a car with no exhaust. The muscle fasiculations are visible to the eye in my leg, you can see my calf and buttocks and thigh moving. My toe will move so much, I'll try not to put weight on that foot because it makes me unsteady.

I went back to my surgeon and we did another MRI showing the disk L5-S1 on the left is bulging again and to add to it, the L4-L5 on the right that I had operated on in 2007 is herniated again. He proposed an epidural steriod injection which I did not get because then the same thing started happening with my left thumb. Plus, I wasn't having any nerve pain, my muscles hurt from the spasms, but nothing like I'd experienced with my back in the past.

So, now the thumb is going and the toe/leg are going nuts all the time. Then I got really stressed out at my 2.5 year old and my neck sort of spasmed, although it didn't hurt like a muscle spasm, but it pulled my head down and to the left. Luckily that hasn't repeated since.

I had blood work, all normal besides an elevated C-reative protein, which is always high when they test it on me (and the rheumatologist I saw said it must just be "normal for me"). Lyme negative, other tick bornes like Ehrlichia and babesia negative, normal chemistries, normal CBC, normal sed rate. I've had my ANA tested multiple times in the past and its always neg. All autoimmune tests are always neg. like, Rheumatoid Factor and stuff like that. I did have Epstein-Barr last year though. An MRI of my brain w/o contrast was "unremarkable".

I have an appt. on 9/12 to see a neurologist. Hopefully I can get some answers. I draw blood for a living and I can't hold the needle in my left hand anymore, I've had to switch to my right. The flashing in my eyes is driving me nuts too. I just hope it stays on the left for now and doesn't progress to the right or I'm screwed. Especially since the doctors keep blowing me off like I'm some looney.

I hope I can find support here, or similar stories so help aid me, since it seems I've have to push on for a diagnosis.

Thanks,
Carly

[njmama09]

I did want to note that I have had epidurals in the past, many of them. And when I had my son in 2009, I had a full spinal block for my c-section (I was not allowed to deliver vaginally because of the herniation I had at the time, the one that later fragmented) and it was placed pretty high on my back, above the surgical scar from the L4-L5 microdiskectomy that I had had back in '07. I was actually numb from my neck down.

Hi Carly,

How frustrating for you to have had these progressive problems for 12 years? with no "zeroed in" diagnoses
I can only compare some of your symptoms with my Parkinson's Disease symptoms. But, it doesn't sound like the typical "events" of PD.

I have floaters in my eyes. I don't have the flashes, but I do have dry eye and spasms in my eyes. I have some degeneration in my c-spine. My neck gets very stiff and I have muscle spasms and weak spine and muscles. Have had injections and epidurals with no improvement. Although, after I started taking carbidopa/levodopa for PD, it has cut the amount of time in pain down.
I have Hashimoto's thyroiditis, urinary problems - kidney and bladder, tremors - resting and non-resting. My tremors are not twitching, just shaking and jerking sometimes.

This is probably not going to help you in the least bit. But, I just wanted to let you know I read everything you wrote to see if I could help or recognize your symptoms. It doesn't sound like PD, but you never know.

Frankly, I'm surprised you are just now about to see a neurologist. Or, am I wrong about that?
I wish you the best and I think the neurologist will be able to help you better than any other doctor so far.

Hoping you get some answers soon.

Tonya

[njmama09]

Tonya, I'm just as surprised as you are to only just be seeing a neurologist now. And I'm only getting to go because I insisted. I had to ask for all the bloodwork and some of the tests I asked for the doctor didn't even know how to spell, how's that for ya? They wouldn't order the MRI with contrast so I"m sure I'll have to get another, which I hate hate hate. I'm beyond annoyed now.

All my problems until a year ago were sort of separate, the back and anything occuring below it was all attributed to my bad disks, so I got that part. My eyes have had floaters since I was 18/19 years old and they said then it was because the fluid was shrinking and pulling the retina.

But when this twitching started, I knew it was something entirely different. And the flashing in my eyes and the fact that it was worse or sometimes not even noticeable until I looked at something red or orange. I'm not having any nerve pain like I had with my bad disks, or that can be associated with PD. When the muscle spasms, it hurts like a charlie horse, but the nerve twitching is just that, nerve twitching/jumping.

I cross posted in the epilepsy board and the more I read up on it, the more it sounds like I might be having partial seizures. They can be triggered by certain colors and the flashing could be an aura and you can remain aware during the whole episode. It can cause twitching in just 1 body part. Most times you don't even have side effects afterwards and if you do, it's a headache or a tired feeling. It can be triggered by apspartame and I'm really sensitive to that, have been my whole life. I get super dizzy and nauseous with any diet or sugar free. A lot of things are pointing in that direction.

I see the neurologist on Monday and just hope she isn't as dismissive as these other doctors have been with me.

Thanks for responding, I'll keep you posted!

Well, then you must be beside yourself, eager to see the neurologist.

I know you are getting your hopes up by expecting some kind of answer soon.

But, please be patient with the neuro and don't expect anything in concrete right off.

Keep me/us posted.
I pray the appointment goes well.

All the best,
Tonya

[njmama09]

Oh believe me, I know it's gonna be a long process. I'm a medical assistant, so I know how these things go LOL It took forever for them to take my back pain seriously. The doctor wouldn't order an MRI initially for almost a year, until the back spasms got so bad they'd drop me to my knees. Needless to say, I switched primary care doctors and have stayed with the same one now for over 10 years. I even drive from NJ to PA to see him because he listens.

I'm just praying for open ears with this neurologist. I hate getting dismissed because I'm only 30. I just feel like yelling HELLO! I can't do my job (which is drawing blood) when my needle-holding hand shakes. Plus, I don't want to be alone with my son and have a major episode or something, that scares me.

Thanks again!

Carly,

I don't understand the reasoning process of the many doctors that put off diagnosing or even taking an aggressive approach with neurological problems and diseases.
Are they young age-shy?

Glad to hear you have a GP you are comfortable with and who listens. He must be worth the long drive.

I was diagnosed within 15 mins. of my first neurological appointment with a doctor who specializes in PD.
No tests, just experience and wisdom and boldness were used after an assessment. It doesn't bother me that she didn't run any tests because I had symptoms for 5 years and my grandfather had PD. I already knew, but didn't want to admit, that I had PD.

I wish it was as simple for you regarding a diagnosis. But, all Drs. are different and have different ideals when it comes to neurological diseases, it seems.

It seems like they should all follow the same standard in the steps taken to diagnose their patients.

You have a great attitude, though. Don't know if I would be as positive as you.

Thanks for being a good example,
Let us know how the appointment goes,

Tonya

[njmama09]

Hey Tonya,

I saw the neuro today and she was great. Very thorough. She did an EMG there at the office and it sucks because it can't differentiate between my existing nerve damage from my fragmented disk and anything "new". My hand didn't show anything at all. But she did see my videos I made of the twitching and was grateful I made them.

I have a "working diagnosis" of focal dystonia. Sort of non-specific until further tests. She basically beat it down to 2 causes. Either focal epilepsy or something going on in my c-spine (the EMG showed degenerative changes). I have to have an EEG and a c-spine MRI. My neck is absolutely killing me since she stimulated it. I had a roaring migraine earlier, which has thanfully gone away now.

I was very impressed with her. She is the first doctor to address my chronically high C-reactive protein, which other doctors have always dismissed. She said she wants to do some research and see if there is a correlation between that and dystonias, and plans to ask some of the rheumatologists at the hospital what they think. She also said that because it's so high, it shows I'm already in an inflammatory state- any little injury or irritation could cause an exaggerated response in my system. I thought that was very interesting.

I will keep you posted, I'm going to try to get the MRI and EEG this week. I feel good that I'm finally on a path to a diagnosis.

Thanks!
Carly

She's sounds wonderful, Carly! I'm so pleased for you. I wonder how far the drive would be from West Texas if I make an appointment with her.

I find it interesting that we have the same problem areas, just different problems. I have C-spine degeneration and osteophytes, and dystonia. Neurological movement disorders all have similarities and differences.

We just need to learn how to outwit our disease.
Here's a youtube video of Billy McLaughlin telling how he cont. playing the guitar even after he got focal dystonia in his hand.

http://youtu.be/cNOkvG-15wA

I know you'll get some deserved help now that you've found the right doctor.

all the best,
Tonya