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Tests to see if I have nerve or muscle damage?

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Posted 7/17/2015 10:14 PM (GMT 0)
I've had Lyme for 11 years but started treatment not even a year ago. Anyway, I was in a car accident 3 years ago and my neck pain has been unbelievable ever since and is only getting worse and my muscles became extremely weak after and is only getting worse and my fibromyalgia is also getting worse.

After three years I just think something isn't right so I am going to see a new neurologist in about two weeks and I want to request tests to do but I don't know what tests to request. I am also going to see a new LLMD and rheumatologist but that is after the neurologist appointment. I know people with Lyme have a lot of neurological symptoms so I am wondering what tests have any of you done?

I am going to request an MRI but what other tests should I request? I want to see if I have muscle or nerve damage or just to test for anything that could be wrong.

My neck pain and muscle weakness is just horrible. Also after my last chiropractor adjustment my left foot and left cheek tingled for about 2 hours and my left arm and hand hurt for about 2 hours so I just feel like something isn't right with my neck.

Thank you :)
Posted 7/17/2015 10:53 PM (GMT 0)
Yellow Daisy if you think that there is a possibility of damage to your neck do not let a chiropractor adjust your neck EVER. If you take your hands and place them palms forward and than lock the fingers of both hands together and move your wrists in and out that is similar to how your spine works. There are discs in between to work as shock absorbents. The fast hard movement a chiropractor does is similar to whiplash. That can breakdown discs, cause bone spurs that irritate nerves and so on.

I have had 2 cervical fusion surgeries. It took years to figure out that I was born with missing bones in my lumbar spine and the compensating from that caused my neck to bare the brunt. By the time I got a diagnosis it was too late for anything but surgery.

My neck itself didn't hurt. I had endless migraines that were actually nerve spasms from the nerve at C7 being crushed and ending in my head.

Do you wake up with numb arms? Nerve conduction testing is two part. The first part is to zap you with electricity at multiple spots at increasing levels to see how your nerves react. The second part is to insert needles into your nerves at those same spots and zap you again. It is not a test for the faint at heart. You feel like if they do one more test I'm going to take it and zap them.

Have you done physical therapy for your neck? Where does your neck hurt? Along the sides, behind your ears, at the base by your shoulders?
Posted 7/17/2015 11:13 PM (GMT 0)
I went to a Physiatrist before lyme diagnosis...and he did an EMG and NCS on my left arm/hand to see if my nerves were functioning properly.

One of them was just putting little pads on my arm/hand and testing the muscles - the other one they stuck needles in....it hurt...but it didn't last long.
What was strange, though was when he stuck the first needle into my forearm, my left leg kicked up.

From WebMD:
"EMG measures electrical activity in the muscles during rest and contraction (I'm pretty sure that one was the little pads placed on my arm and hand)

NCS measures how well and fast the nerves can send the electrical signals.

An EMG is done to:
Find diseases that damage muscle tissue, nerves, or the junctions between nerve and muscle. These problems may include a herniated disc, amyotrophic lateral sclerosis (ALS), or myasthenia gravis (MG).
Find the cause of weakness, paralysis, or muscle twitching. Problems in a muscle, the nerves supplying a muscle, the spinal cord, or the area of the brain that controls a muscle can cause these symptoms. The EMG does not show brain or spinal cord diseases.

A nerve conduction study is done to:

Find damage to the peripheral nervous system, which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves. This test is often used to help find nerve problems such as carpal tunnel syndrome or Guillain-Barré syndrome."

I will never go back to that Dr. He said some strange things to me...like "You don't need to apologize,...it's not your fault" You're a nice lady, it's not your fault"
I never once apologized - it was really creepy.

Then he called my husband in and said to him, "I told your wife she doesn't need to apologize...it's not her fault"..

Weirdo
He just said everything was "fine".

That was one report I never got a copy of...I'm thinking of getting it and seeing for myself how the results turned out.
I wonder what he wrote down on the report...
Posted 7/17/2015 11:56 PM (GMT 0)
Girlie we had very different experiences. I've been tested 3 times. Each time was worse as my nerve damage progressed. They increase the current until they get the desired nerve response. It's how the tell the level of damage. The move the needle around trying to find a spot in the nerve that will respond.
Posted 7/18/2015 12:11 AM (GMT 0)
The thing to remember, Lyme causes nerve impairment and damage (but it can heal too) and muscle issues, but it's good to be sure that it's not something else. So while I encourage you to get the tests for these things, remember that as you heal the Lyme many of these issues could go away.

My experience is much like what jrpsf's was - very painful and I'll never let another person do that to me again because of it. My legs locked up and I couldn't even drive home.
Posted 7/18/2015 12:28 AM (GMT 0)
Not sure about the nerve testing, but I've had the EMG and even a muscle biopsy. I survived both, although neither were all that pleasant. But for starters, I'm sure they will do simple CPK levels... this will directly let you know if you have muscle damage.
Posted 7/18/2015 12:35 AM (GMT 0)
Oh, it hurt - I guess I didn't emphasize that...lol

But, each test I had the EMG and the NCS - it was about 15 minutes total time.

The way he was talking to me...was like he had some opinion about me...and I'm wondering what he wrote down...
And, I'm not happy with "you're fine"...or "Everything tested ok"
I'd like to see the graph...or the numbers...whatever it is...so I can see the evidence.

I guess I'm a little suspicious of dr.'s. It's because of my experiences over the years...even prior to lyme.
Posted 7/18/2015 1:41 AM (GMT 0)
Girlie I think there are way more lousy Dr's than good ones. It's sadly the reality. I had a Stanford Neurosurgeon that I went to before I knew my first surgery failed. He ordered a CT Mylogram of my neck to get a truly accurate picture. Think how dated MRI technology is.
My post Mylogram appt he told me there was nothing he could do for me. I kept it together and got to my car before crying. My mom called and I lost it. That was my hope.

I had the best physical therapist. I wouldn't be here today without her. She suggested a pain doctor. This was a year or so later. I had faxed his office all of my tests ahead of my appt. He brought me into his office and said I can help you but anything I do will be a band aid until you have surgery to fix your neck, WHAT? The Mylogram showed clearly that the fusion failed. I had received a copy of the results and questioned my PCP at least 5 times over statements in the results.

The surgeon didn't say there is nothing I want to do for you...that's different. I could have easily sued but that would have added to my stress and I would have donated the $.
Posted 7/30/2015 8:37 PM (GMT 0)
Thank you for all the replies! I will ask about all these tests. I have read people get nerve damage from some of these test you guys mentioned so I am a little worried but I will talk with the neurologist. Unfortunately I have to cancel the appointment I had on the fourth because I just found out the place I was going to go to does not see people who were in car accidents. So I have to try and find a neurologist who will see me. This neurologist was recommended by a Lyme doctor, too so it stinks I can't go see her.
Posted 7/31/2015 2:07 AM (GMT 0)
jrpsf- What's the name of the type of doctor you saw? I didn't know there was such a thing as a pain doctor. I have back pain, neck pain and headaches. I see a physical therapist and she has helped, but whereas I was making slow progress, I feel as if I've stalled. I'm pretty sure most of my headaches are coming from issues from my neck.

I had an MRI done about a year ago and they didn't find anything wrong. I've seen a chiropractor, but after a bad adjustment that made me feel worse, I stopped going. I saw an upper cervical chiropractor, who did help part of the time. But he worked strictly on my head and neck, and I knew I had trigger points and issues with my back that he couldn't address. My NP gave me a couple of recommendations for holistic physical therapists and she's been great. But like the neck chiro, I feel like there's something she's missing.

I'm also debating whether or not I should get more tests done. Is all this just Lyme and anaplasma messing with me? how much damage did the Lyme do? The questions feel endless sometimes.

What kind of picture does a CT mylogram give?
Posted 7/31/2015 5:27 AM (GMT 0)
We have Pain Management Doctors (Canada) - and that's what their practice is...helping you with managing your pain...
Posted 7/31/2015 3:05 PM (GMT 0)
Get the MRI study done but I would try to avoid having it done at a hospital. MRI studies can very with how many slices they take and a lot of times the MRI machine at a hospital is in high demand. What happens is that a person with an emergency will get priority so they will do the least amount of slices with your MRI to speed things along.
With a whiplash injury there is a good chance that the cervical nerve rootlets have been damaged. These guys are small and you need as many slices as possible to image them. I forget the name of the type of MRI to ask for but you neurologist should know, it is the same study they use when looking for brain lesions.
Also I would recommend seeing a sports medicine Dr. to get a proper neuromusculoskeletal evaluation from a mechanical injury. They are similar to orthopedic surgeons but the don't do surgery. Most Dr.'s these days aren't worth their salt when it comes to doing basic orthopedic exams that can have clinical significance, instead they rely too much on the tests and imaging because they are lazy or never learned it well.
Posted 7/31/2015 6:55 PM (GMT 0)
Cheetah
At that time the test was ordered by my neurosurgeon who was a brain surgeon and fixed my neck.

I was a mess for years before Lyme. I worked with an amazing Physical therapist who did soft tissue work on me. That's what you would ask for but there are very few PT's that do it and really know what there doing.

See if there is anyone doing trigger point therapy in your area. I was sent to a trigger point specialist by the pain Dr I saw and that was really helpful. If your muscles are in fight mode than it's are very likely their causing issues. You can google trigger point charts. Then test the areas with your own hands or a tennis ball. I have a theracane. Amazon sells them for less than $40. You put pressure until the pain goes away. It's different than you imagine. It's logical and really helpful.

Regarding pain Dr's. The one I saw in the past is not covered by my insurance now so I researched and made an appt a few months ago with a different dr. It was a zoo, total BS. There had to have been over 50 people there. The end result was come in and be tested by the different depts. Ok that was fine. Then they call to schedule it and they wanted me there from 8-4 to do it all in one day. I manage about 2 hours out and I had told the doctor that. Avoid a big practice with all the services in one office.
That's a $ machine.

I wouldn't spend money on more tests until the Lyme is treated. I get infected about 3 months post major shoulder surgery. That surgery will be 3 years this Nov and I don't have full range of motion and I still have a lot of pain but I'm not going to go see the surgeon until I'm done with this. I don't think there is any point.
A myelogram consists of injecting a radiographically opaque dye (dye that is picked up by x-ray) into the sac around the nerve roots, which in turn lights up the nerve roots. The CT scan follows and shows how the bone is affecting the nerve roots
Posted 8/1/2015 5:23 PM (GMT 0)
After healing from a 40 yr old Lyme infection just 3 years ago, many things have healed for me - I do have some nerve damage that seems to be permanent, but it can take up to 7 years for nerves to completely heal - and to even regrow where there has been too much damage, so I'm still waiting to see if, in the next 4 years or so, I have even more healing.
Posted 8/4/2015 9:46 PM (GMT 0)
I have thought about seeing a pain management doctor but what exactly do they do?

Yeah I always get MRIs done at places specific for it, never at a hospital. I think because it is cheaper. I will ask about cervical rootlet damage and look into it myself in the meantime. I will see a sports medicine doctor, that is a good idea.

I have gone to airrosti which is muscle work but I can't remember if it helped. I went last year and the year before a few times. I am going to go do it again, I have an appointment set up.

I was working on treating the Lyme and assuming the pains would go away over time but then after I went to my brother's wedding in May I have been significantly worse. It makes me think something has to be wrong with my neck other than just Lyme.

Oh also I stopped seeing the chiropractor after the incident with the pain and tingling. He used to make my neck feel better but ever since the wedding I just can't get back to how I felt before May.
Posted 8/4/2015 10:01 PM (GMT 0)
I'm so sorry to hear this, Yellow daisy! I hope you can find relief soon! I hate it when my neck is all out of whack. It will eventually get my upper back stressed out too.
Posted 8/4/2015 10:57 PM (GMT 0)
Yellow daisy,
There are typically two kinds of pain doctors. There are anesthesiologists who are not being used for surgery that go into pain management but have no understanding of the anatomy of pain. They are just very good with needles so they can do epidural injections, nerve blocks, botox for migraine relief etc.

There are other pain doctors who actually understand and can explain to you what pain running up the side of your neck or at the base of your neck means, treat you and give you the tools to relieve the pain.
http://www.amcchiropractic.net/book/export/html/15
Scroll down to the area where it says Vertebral Subluxation and Nerve Diagram. That's a very helpful chart. I had what felt like endless migraines. It turns out they were nerve spasms from my nerve being crushed between C6-C7 and once the spasm got to my head it created the same effect as a migraine. I always knew the "migraine" was hanging on in my trap muscle and if that wasn't released it wasn't going to go away.

If your issues are at the base of your head take two tennis balls and tie them together in a sock. Lay on a pillow, place the ball sac (my son had a blast with that) under your head, right where your head meets your neck. Start off with just a few minutes at most. This is a common place that causes pain because we have tightened those support muscles in reaction to pain. We lift our shoulders and "turtle" our heads as a method of guarding from pain without realizing it. We also tilt our shoulders forward as a way to guard. That pushes our necks forward too.

Have you ever tried wearing a neck brace? Just the inexpensive kind you can get at a drugstore so you can see if lack of motion reduces your issues. I was sure my neck was giving me problems so I put my brace back on. Wearing it made it clear that it wasn't my neck causing the pain it was my shoulder.
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