posted
Concerned there was something else going on too.
I thought muscle atrophy was a part of Lyme, I have it only in one leg, and that entire side is weaker than the other. I have night jerks too but not in my limbs, in my torso.
I have to see another neurologist now. I am devastated.
Please tell me that someone has one sided atrophy...please.
Posts: 243 | From chicago | Registered: Dec 2005
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i personally do not have atrophy but many on this board do. I think you will find it is very much a part of lyme. What testing have you had done?
lesley
Posts: 120 | From NB Canada | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Lyme may have weakend the muscles and nerves and may have let a disc collapse some which could be putting enough presure on the nerves to damage blood flow and correct muscle tone.
My father hurt his back a few times and has had different surguries for disc removal and or disc trimmed and he is right handed and his muscle's atropied in that arm there much smaller.
I didnt lose to much muscle tone in my case I tore tendons 3 of them.
Make sure your getting lots of mg,complex vitamin B into your system and cq10 they help nerve damage and muscle 's.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Mine started out one-sided, below the waist, so was suspected to be from pinched/damaged nerve in lower back. I definitely had lower back pain several years ago, improved now but still some stiffness there, so I was unsure........until the atrophy appeared on the other side and then above the waist. But the swallowing trouble and unreliable voice had suggested neuro anyway. I don't see how swallowing trouble could be caused by a lower back pinched nerve.
So, don't know what the doctor will say now, but for me it is obviously neuro lyme or something introduced at the same time, such as a virus. But Bb my prime suspect.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks, I tried an epsom salt bath and I thought the twitching would never stop so I have been too scared to try Mg orally.
I don't think I have a pinched nerve though, I have weakness in my hand and arm as well.
If you mean tested for Lyme I have been tested up the ying yang. Dr.'s say it looks like classic case of LD. I am quite sure I have LD, or something exactly like it.
What I don't want-- as I am sure you guys can relate too, is for it to trigger some random gene we don't know about yet and turn it into a disease with no cure. Especially the one with 3 to 5 years life expectancy after diagnosis.
I also don't want to go to another neuro that doesn't know enough about Lyme, 'cause then I will be getting a diagnosis I really don't want, and might not deserve.
Posts: 243 | From chicago | Registered: Dec 2005
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posted
Lyme is neurotropic so it is not surprising for it to produce neurological damage, such as muscle atrophy. Unfortunately, the neurologists have not learned this yet. So, if you go to them, it is like a dog chasing, but never catching, its tail. They will test and test and test, run up the bill, but never consider lyme.
Better to get treated, see what happens before jumping off into unknown neuro diseases for which there is no cause determined and no treatment available. If your LLMD is saying maybe something else involved, he may be looking over his shoulder at the state medical board which wants every blooming symptom given a differential diagnosis (looking for other stuff) before using the pattern of symptoms in a clinical diagnosis of lyme. Protecting his back, in other words.
So, don't freak out just yet.
Posts: 8430 | From Not available | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I didnt mean you had a pinched nerve, it lyme cause the same kind of damages nerves ,muscles,bone, it steals our minerals sugars about the only thing it leaves alone is iron.
It strips our body of{{mylene}} that covers nerves like insulator {carries electric signals}to muscles heart organs everything, mylene makes up tendons cartilages etc which holds body joints in place etc.
Add thgis all together eventially you get symptoms like yours and many many more.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
oh, sorry about the pinched nerve misunderstanding, I am really upset and not thinking clearly.
and thanks for the further info about the meyelin, I appreciate any info that can assuage my fears as I keep crying.
Thanks for your concern about my LLMD, but he is great and very reputable (buy-the-book), and seen tons of patients, which is why his concern- concerns me. I would like to think he is covering his *** but I have already seen a neuro through him.
And there is no way in hell I am stopping antibioitics, anyway.
I am just scared.
Posts: 243 | From chicago | Registered: Dec 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I developed the torso jerks and increased muscle twitching and muscle jerks. Several of us on this board have talked about it. For me, these are a few symptoms that have gotten worse on treatment, most other symptoms have gotten better. It's worse when I try to sleep. It scares me horribly. I'm on medication to try to get some relief from it.
Recently I did find a Lyme website (I think it was a state support group or something) a while ago that listed torso jerks under Lyme symptoms. I'm trying to find it on my computer files but I haven't so far.
You can look up in the search on Lymenet here about Myoclonic Jerks and there may be posts - I've ready many but can't remember the topic names.
I don't have the muscle atrophy but agree with the post that Lyme can de-myelinate the same way MS can, so symptoms can be similar.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I have lots of muscle atrophy from lyme and co-infections.
The advice you are getting here is 100% on the money.
Stick with the treatment and forget going to more neurologists.
The sooner you get propper treatment, the better the outcome. I got most, but not all of my muscles back, time is of the essence.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
The first time I saw the LLMD in Feb. I told him about all my neuro symptoms. He asked me if I had a seen a neurolgist before I came to him. I had seen three. None of them knew anything about lyme but at least they ruled out the bad neuro stuff.
My llmd said he doesn't know if I have lyme or not. He said it's a clinical diagnosis and if I get better with treatment then it's lyme, if not, then it's not lyme. He said if the test is negative the chance is still 50% of having it.
I continue to take my antibiotic but still keep an open mind to the possibility of some other illness.
My llmd is an honest and decent man.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
At my worst and before lyme tx, I suffered from torso jerks. It usually happened as I was falling asleep.
This symptom resolved with lyme treatment. However, I had a few again while herxing on babesia treatment. I am once again free of this symptom. Keeping my fingers crossed and feeling very grateful for the relief. It is a very scary symptom.
It can get better. There is hope.
Best wishes.
Posts: 925 | From California | Registered: Sep 2004
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posted
Here is an important point to remember. ALS only affects voluntary muscles. Almost in all cases, the individual has an intact mental capacity, they simply loose the ability to move their muscles.
In Lyme Disease, with certain cases, although rare, they do occur. I'm actually one of them. You will loose muscle tone, and have weakness. My weakness started in one side of my face, then spread to the other side. Facial palsy.
Then it spread down one side of my body, then the next.
In some of us, Lyme infects the spine. So, when the periphial nerves can't communicate with the spine, guess what?? nerve weakness, less blood flow, and symptoms similar to ALS.
The difference, of course is that your mental capacity with Lyme is profoundly affected. With ALS this is almost certainly not going to be the case.
While its possible to have both concurrently. I think its perfectly reasonable to ascribe these symptoms to Lyme if you also have mental deterioration.
Posts: 559 | From Cary, NC | Registered: May 2006
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bettyg
Unregistered
posted
Gambler, sorry to read about your atrophy problems.
I think you can/will get more replys if you change your topic title by using the PENCIL icon to "atrophy and torso jerks".
Now you have their attention if they have these symptoms. Up for the weekend folks to read.
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