posted
I was in a car accident 30 years ago and suffered whiplash. I've had pain and difficulty holding my head up periodically ever since. I currently have a dual dx of ALS and Lyme and am on iv ceftriaxone.
Yesterday I tripped and a massive electric shock of pain paralyzed me from the neck down. I barely kept my balance.
Is this the ALS or Lyme degrading an already weak area of my spine? My MRI showed no abnormalities a few months ago. Should I see a neurosurgeon?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Uhh, you mean it momentarily paralyzed you?? I assume so, since you seem to be typing. How are you now??
If you're in an acute state, you need to go to the ER pronto. If not, yes, you probably should see a neurosurgeon, even if you don't intend to get surgery, unless absolutely necessary.
But get a good referral! (I know a dr who is supposed to be the best neurosurgeon in NYC).
Posts: 3792 | From around | Registered: Mar 2008
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posted
I would be looking for a chiropractor or accupuncturist.
A surgeon is not going to be able to help if there is no spinal damage.
Most likely the problem is in your brain rather than in your spine. If you have not had a brain SPECT scan then that test will give you the best info. The SPECT will show brain inflammation or hypoperfusion.
There is an LLMD neuro in Stamford, Connecticut. Hubby just got back from an appointment with him. He treats using Dr B guidelines and is very thorough. Very expensive as well. One of the best neuros hubby has seen -- just wish he knew more about coinfections.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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mojo
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posted
Sounds like you need to see your neuro. I'm guessing you have one if you have a dx of ALS??
Posts: 1761 | From USA | Registered: May 2006
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posted
I would be questioning how much experience your LLMD has actually treating patients with neurological lyme.
There are many lymies in wheelchairs and many others will strange movement disorders and other neurological problems.
Hubby has tremors, myoclonus, seizure-like episodes, dystonia and even torticollus -- his symptoms all come and go. Technically he has normal neurological exams because his symptoms fluctuate so much and they do not fit the pattern for any neurological disease -- his neuro symptoms have components of MS, Parkinsons, myastenia gravis etc etc.
Pain by itself can cause a lot of unusual symptoms -- everything from vomiting to loss of consciousness.
The LLMD neuro I mentioned is also a pain specialist so that is someone to keep in mind if you continue to have unusual neurological symptoms.
Hubby has had many episodes that I used to call temporary quadriplegia -- his entire body would freeze up and he couldn't move a muscle and he would lose the ability to speak.
Some docs thought he was having muscle rigors, but now the term they are using is dystonic spasms. These episodes can last for hours and will only resolve with IV Ativan or some other IV med -- at different times we have used everything from IV phenergan to IV demerol and more. Many ER visits and hospitalizations over the years due to these spells.
Of course another possibility would be something like "drop seizures".
This is not medical advice, just my experience based on hubby's symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I am so sorry that happened. Personally, this disease never ceases to amaze me and I would bet your episode was lyme related. Hope you feel better!
Posts: 747 | From Utah | Registered: Apr 2010
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posted
Have you had an MRI of your neck lately? You may have degenerative disk disease and nerve compression. Try to get one done and see.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You say you tripped and this is what caused the 3 second electric shock and paralysis due to pain. If this is correct, then I believe the tripping jolted your neck and caused the paralysis by pinching a nerve.
When I herniated a disc in my back, it was while riding on a riding lawn mower. I hit a few small bumps, and this feeling of electric shocks (bad pain) shot up and down my entire back. It was something!
But, I cut the entire yard and raked it and loaded it into the wheelbarrow and emptied it in the back woods.
2 days later (48 hours later), I got the worst back pain and began to freeze up (have difficulty moving from stiffness in back). That's how long it took the total inflammation to set in from my injury.
Then, I had the most awful back pain ever. Got an MRI and found out I had a herniated disc and a bulging disc.
So, I would say that the next few days will tell if you have seriously damaged your neck or not. If you have herniated a disc, it will take a little time for the inflammation to all set in and the bulging disc to press on your nerve and cause bad pain and other symptoms such as stiffness.
If this happens, it is MRI time. If nothing happens, you just jolted yourself and probably temporarily pinched a major nerve, causing the 3 seconds of paralysis.
Hope nothing comes of it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Rumigirl
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The only thing is, if it's from compression in your neck, which it sounds like, and you had temporary paralysis, that means that the impingement would be on your spinal chord, not just a nerve.
I agree that it doesn't sound right that your LLMD didn't think that it could be related to Lyme or ALS?! Huh? Maybe he is thinking structural problem? But even that can be caused by Lyme (degeneration of the spine, etc.).
it's certainly true that we can get the weirdest, most awful symptoms that come and go (if you're lucky they are intermittent) with these blasted TBI's.
I second the recommendation of the neuro in CT that I believe Bea and her hubby went to, if you want an LL neuro. He's not a neurosurgeon, but he's a LL neuro and is thorough.
Posts: 3792 | From around | Registered: Mar 2008
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posted
TF Your experience sounds similar to mine. My neck is so stiff and sore right now that I can barely move.
I am going to see a neurosurgeon next week. I really think this is an old whiplash injury that has gotten worse with Lyme/ALS and age.
I've never had the electric shock feeling before so that makes me think its a bone spur or disc problem. My MRIs were ok 6 months ago but I've read there is a CT done with injecting a dye into the spine that can really show an internal bone spur.
Thanks for all the comments everyone.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
An MRI will show a herniated disc.
You tripped and the problem started, so I doubt the problem is a bone spur.
People can herniate discs by tripping and falling. I was sitting and rode over a few small bumps and it happened!
Bone spurs grow over a period of time. The symptoms come on slowly and get worse and worse over months. So, the way this happened doesn't sound like a bone spur to me at all.
A chiropractor can order an MRI to look for a herniated disc, or a doctor. If you have a neurosurgeon all ready, he would certainly order it once you tell your story and your symptoms.
You can ice the neck for the next few days and take anti-inflammatories to try to lessen the pain. If you have muscle relaxants, they will also help. If you get to a doc, they should give these to you based on your story and symptoms. I took narcotic pain killers and they just took the edge off my pain.
I herniated my disc a few years after getting rid of lyme and company. I had had ocassional lower back pain for about 20 years before this happened. I was doing something I routinely do, and this happened. So, the disc must have gotten in very bad shape over the years. This must have just been the last straw.
It could easily be the same thing for you. You have a long history of injury there and could well have spurs, arthritis, discs in poor shape.
But believe me, I knew that something different had happened to me when this disc herniated. I had never had anything like it when it came to extreme back pain. Going to the chiropractor did nothing for it.
Don't put off the MRI if this goes on for a week. Don't let the doc tell you it is just pulled muscles, inflammation, you need physical therapy, etc. A friend went along with this thinking after a fall, and 3 months later when she was no better she finally was sent for an MRI and found out she had herniated a disc in the fall.
That was 3 months of agony and wasted time off from work, unsuccessful treatments, money spent on PT, etc.
Better to get the MRI sooner rather than later so you will know if you are dealing with a herniated disc or not.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Have you heard of CT scan with myelogram? It's an invasive test where they inject dye into the spinal column but it really shows nerve blockage better than a regular MRI. I hope my doctor will order it.
I have muscle atrophy and arm weakness that has been getting worse for the past 2 years. do you think that could be related to a problem in my neck? My first neuro did MRIs and didn't see any problems. That's when he told me I had ALS.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, atrophy of an arm can be caused by trouble in the spinal column at the neck level.
I had a friend who was pole vaulting in high school and fell to the gym floor directly on his head.
X-rays showed nothing broken, so he was sent home. Then, his arm began to atrophy. He went back to the hospital and this time the x-rays found the broken neck! (He was a body builder. He was so muscular that the muscles kept the broken bones in place so that his spinal cord was not severed, thank God.)
He was operated on and put in a full body cast for a number of months. He made a full recovery.
This was many, many years ago. (Say, 40 years ago.) Hopefully, such a thing would not happen today.
This is not to say you have a broken neck, of course. It is just proof that a problem with the spinal column at the neck level can cause atrophy of an arm. There would be weakness of that arm as part of that.
If you have had this of just one arm for the last 2 years, the cause should have been found by now. You don't want to let this go on. It sounds like arthritis or a bone spur in your spinal column is affecting the nerve to that arm--digging into the nerve, you might say.
Now that you have fallen, you need your spine examined for another reason. A CT with myelogram would find everything--herniated discs, bone spurs, everything.
I'm sorry, but atrophy of one arm does not sound like ALS to me. Perhaps all your lyme symptoms drove the doctor to give you that diagnosis. But, that is only because he knows nothing about what lyme disease can do to a person.
ALS is a diagnosis of exclusion. It is only to be given when there is no other disease or condition that can account for the patient's symtoms.
Lyme and a bone spur can account for the symptoms you have described.
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