Tag Archives: Neurologist

Neurosurgeon Visit And Lyme

11 May



Neurosurgeon Visit And Lyme

Last month my Neurologist told me my he found a new spinal cyst, more bulged discs and my spinal stenosis was worse. He told me I was one “small jolt away from be paralyzed from the neck down”. That’s enough to scare you. So I was a little nervous for my appointment yesterday with the neurosurgeon.

For the first time ever my neurosurgeon really surprised me with his answers and he was a really nice guy. I won’t bore you with how the long appointment went since he was running an hour behind. He was probably one of the nicest doctors I have since since this nightmare started.

The first thing my neurosurgeon asked me when he walked in was “did your kids do this pain chart’? (I posted a picture of it below) My pain chart circled the whole body and I filled in the various shapes all over the body. He said “there is no way your spine is causing all of these issues you must have an illness” and I told him about lyme disease. He said that makes sense.

So after going over some physical tests with my and my 2 CD of MRI scans he said my neck was worse. He said I have “hypermobility” and he can tell by my fingers. He measured the compression on my spinal cord and said that it wasn’t enough to cause he to perform emergency surgery. He seemed confused the whole time we talked.

He said I do not need surgery and I should be fine. He blames my paralysis and loss of ability to walk a couple months ago on lyme. Yep he actually told me he believes I am really sick and lyme is causing it all. I can’t believe a neuro said these words. So no surgery and no plates and screws. He said he can do the surgery but with all of the pain I have he said “what is the point you wouldn’t know if it helped anything”.

He recommends I go to a well known hospital and have a a community of doctors or meeting of the minds to figure out what is all wrong with me besides just lyme. He saw my medical records and each doctor has different diagnoses such as Fibro, Lupus, Lyme, CFS….. so he said I need Dr House in my corner who will figure out exactly what is going on.

He said I was a nice guy and he really hopes I can get some help. Which was very kind and doctors have never said that to me. He even talked about the 49ers with me. I was very pleased with the visit and happy I do not need surgery. Although it doesn’t cure the paralysis, radiopathy and pain at least he said it was the lyme and not my spinal cord for sure.

pain chart

My pain chart. My hand cramped or I would have marked more.

Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

11 Apr



Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

After losing the ability to walk recently my walking slowly came back. Vertigo has not been my friend though so I never walk like a “normal” person. I knew my body was telling me something and I bought a wheelchair because I could feel something was wrong. My body was right so always listen to it. I had a lot of bad news this week not just about me so let’s just say I am a walking zombie.

At my neurologist appointment today the neurologist said “why did you come to me, you need to see a neuro surgeon asap”. He did the standard muscle testing and poked needles in my body and I couldn’t feel most of them. I have numb, cold areas down my spine, legs and feet do not work well, a lot of spinal pain. My arms are really numb and couldn’t feel the safety pins he stuck in them.

The neuro said “you are very close to becoming a quadriplegic and you should have had surgery back in 2010″. Well back then my Lyme doc said “no surgery” due to the antibiotics and the neuro surgeon told me not to come back until I was losing feeling in my arms because the surgery is not the greatest and try to get by as long as I can.

I was told by my LLMD and by my new LLND that Lyme can ruin the spine. So I am not 100% sure if this is Lyme related or just a coincidence. But how does ones discs herniate when they just lay in a bed all day and barely walk around the house? The doctors seem to think I am out playing sports.

I am going to remain positive and know that this surgery will help keep me from being a quadriplegic. I am now looking at options for surgery so if anyone has feedback good or bad feel free to comment. I am thinking about the laser surgery in Arizona versus the standard plates and screws.

I was looking at the Laser Spine Institute in Arizona. Any feedback? Better than normal surgery?




– Hope you all are having a better day. Keep your head up better days are ahead.


PS I haven’t slept in 24 hours so I may not be really writing this and just hallucinating. LOL




Lyme And Fibro Flare

29 Oct



Lyme And Fibro Flare

My body is in a tug-of-war between my Lyme disease and Fibromyalgia (FMS) both flaring up at the same time. Some say you cannot have Fibro and Lyme together but you can. I know many are misdiagnosed with Fibromyalgia and they really have Lyme disease and not Fibromyalgia so it can be confusing. You will know if you have both Fibro and Lyme since there are differences.

Doctors like to tell everyone they have Fibromyalgia if they don’t know what is wrong with them. It is a general term which basically means chronic wide spread pain. Fibromyalgia Syndrome (FMS) is used when they diagnose the condition. I’m not great at explaining things with my Lyme brain so just pretend this sounded very scientific and smart.

To get an accurate diagnoses of Fibromyalgia you should see numerous doctors and get different opinions. I went to a rheumatologist (recommended), neurologist , Primary Doctor and a Movement Disorder Specialist. You can even go to an Endocrinologist and rule out thyroid issues and other issues before hand. Most likely if you have Fibro or Lyme you will have a thyroid issue and low Vitamin D levels. Get blood work and many panels because I found so many issues I would have never even thought to check.

I had all the pressure points of Fibromyalgia and every symptom which again many are the same as Lyme disease symptoms. My primary first diagnosed me with FMS, then two different rheums, a neuro and then a movement disorder doctor. At that time I knew I had many more symptoms than just Fibro but my Rheum refused to listen or care. I was diagnosed with Lyme and tick-borne diseases a year later.

It is hard to explain the differences in the Lyme and Fibro flare. I think the Lyme is more angry and in the brain at times (migraines daily, pressure, pain) and the Fibro seems to feel like someone is poking a fire poker in all the pressure points non-stop. They Fibro also seems to make the muscles in my case hurt worse than the Lyme flare or just daily bad day does. Of course there are 100’s of symptoms but they are all much worse than a normal bad day of pain, fatigue…etc.

The common factor tat realy set my 30 year Lyme and co’s off and my recently diagnosed (3 years old) Fibro was Stress! I was working as a higher up manager for a major retail chain/pharmacy and trying to keep a 2 million dollar profit coming in. I had been injured at work two times in the same month my stress was at an all time high since the CEO’s were coming for visits.

At no fault of mine a contractor dropped about 600 lbs of totes full of liquor on top of me. I was trapped under the pile and tweaked my leg. Being the model employee I never told anyone (my mistake) but basically at my job if you get hurt you get fired.

The next week an employee dropped heavy totes on me knocking me backwards kinking my back and my neck. Again I pretended it never happened although it did hurt for weeks I was tough and shook it off. I wish I would have filed for workers comp but I was dedicated and loyal although the company could care less that I got sick and went out disabled.

So the combination of stress and two back-to-back injuries set the Fibro and Lyme into a rage in my body and that is when I became disabled. It hit me hard and I was bedridden for weeks and could barely talk. Nearly 4 years later and now I am able to walk around the house and get out 1-2 times a year.

So even though a few people have been rude and yell at me saying “you don’t have Fibro” I know I do. I am in Fibro support groups and they are so much different than Lyme support groups. I can tell the subtle differences in Fibro and Lyme symptoms. So yeah they are both painful and a living nightmare. With both of them came Chronic Fatigue Syndrome (CFS) which is another horrible thing to have and another story for another time.

Worpress is acting up and deleted some things I am writing so I hope it makes sense. Hope everyone is sleeping or having a better night. Take care


Dropping Things, Tremors And Movement Disorders

10 Jun

Movement Disorders In My Hands

I have had really bad tremors in my arms and hands as long as I can remember. I can feel the jerking, twitching movement deep into my arms and tissue as if an earthquake is going off in my body. I was once thought to have Parkinson’s disease as I’m sure many of you have been misdiagnosed with.

My doctor when I was 13 said I would live my life looking like Katharine Hepburn with severe shaking. Every time I saw Hepburn in a movie growing up and saw her shaking I was scared to know that would be me one day.

I worked in retail at age 18 and when I would ring up a customer and hand the change back I would drop or what looked like throwing their change back. I cannot count how many times someone asked why I was so nervous. I had to explain to them that it was not nerves. When I do get nervous the tremors are severe.

Over the years I was prescribed pills which should have helped wit the tremors such as Beta Blockers. One doctor thought he struck gold when he prescribe me Beta Blockers. He was so excited and thought he had cured me tremors since he thought my heart and pulse caused the tremors. Turns out they did not help.

My old Neurologist thought I had some movement disorders. I now know that the Lyme, Fibro and coinfections can cause tremors. Now I know I am not alone and that there are so many others just like me in the Lyme community. Shaking and tremors are common symptoms.

For the past 4 years a new problem has come about. Not only do I have the tremors but now I throw or drop things a lot. I will be brushing my teeth and holding the tooth brush and my hand will jerk and there goes the tooth brush flying across the bathroom. I drop my razor while shaving and shampoo bottles go flying in the shower.

When I will nearly knock over something or drop it and go to catch it my tremors/jerks are worse and I end up making a bigger mess. It is like the old instinct to catch say my water bottle from falling over and spilling it kicks in but then my hands do not react the way I want them to.

If I sit certain ways in my chair my fingers will go crazy and shake violently. If I try to touch my pinky finger to my thumb the picky finger will shake rapidly.Holding my arms and fingers out straight, my fingers shake side to side very rapidly. I usually just hold my hands into fists all the time.

I call my hands my idle hands after the movie. In the movie this guys hands have a mind of their own and he cannot control them.

Depth Perception

I have noticed my depth perception is off also. I will reach across a table for an item and end up hitting or knocking over 1-3 other items I thought my arm cleared. I will reach for things and stub my fingers into walls or hard objects. I stubbed two toes last year on different days and broke both of them. I swear my feet were a good 6-8″ away from the objects my toes smashed into.

One of the many reasons I have stopped driving a car is due to my depth perception. I stopped driving from going in to a trance, dizziness, slow reaction time, feeling of movement when the car is parked and the list goes on. I feel depth perception is very important while driving and I am afraid I may hit another car or run into something.

I have bumped my bad knees into tables or chairs I thought were further away. I feel as if I was in a glass shop with delicate china plates an cup I may break a bunch of things. I used to be very precise and never run into things or knock anything over but in the past few years it is increasingly getting worse.