posted
I'm seeing my LLMD, and because of some muscle jerking, got referred to a local neurologist as well. The jerking seems to have resolved, but I'm having trouble walking.
On the treadmill, I made it nearly half a mile before my foot went numb, and I started tripping over it. Last night, I had to walk about 6 blocks back to the car, and I didn't get the numbness, but I felt like I couldn't control my leg, my foot was dragging, and again I was tripping over it. It's almost like I don't know where my feet are when I'm walking.
My neuro exams always go fine, because to start out, I'm okay. I made it probably 4 blocks out of the 6 before I started having problems. So sure, I can walk down a hallway without falling down. But, apparently, I can't do it for 4 blocks.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I have the same problem...its an overall weakness on my left side. It is one of the first symptoms I had and continues to be the worst.
It is especially bad during a herx which I am going through right now. I had been to a neurologist who had done some mri's and found an inflammation on my brain stem that he says is contributing to it.
Posts: 37 | From Eastern North Carolina | Registered: Apr 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Same thing for me. It is hard to get doctors (besides our LLMDs) to believe this because in order to make it to the doctor we have to be well rested. So yes sometimes I can walk down the hall fine but there are other times when I can't. And most of the time I can hold a cup in my hands but when I'm tired don't be surprised if I drop and spill.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Started out my right side and has since changed to my left.
More specific, sometimes my hands just refuse to do what I tell them. I'll be typing along and my pinky just won't hit the A key (I'm a tech).
When the herx is pretty bad I can't get my arms to work to reach for my drink, remote, etc, knees just won't tense up when I go to stand, so I sit down quickly before I get up.
Even when everything is working its like there is a delay, kind of like using a slow computer. It'll do what you ask when it gets around to it.
Lately the severity of my herx does seem related to how active I've been. The better I do one day the worse I'll be the next.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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posted
Hi....my problems started out with severe pain and weakness in my right leg only. It goes from my inner thigh down to my knee, sometimes even to ankle. I can't control my leg, it's like it is separate from my body. Some days I'm pretty good and think I'm getting better and others I can't walk without a cane. Now I'm on Doxycycline and am pretty sure I'm herxing. All my Lyme tests so far have come back negative but need to have a Igenex. Also have tinitis, cellulitis in left foot, vision problems, depression, mood swings, terrible memory and just about everything else. If it isn't Lyme then I don't know what I have!
Posts: 13 | From Orange CT | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Check to see if any meds you are taking affect what is called QT - that will be in the mfgr. details. QT is a cardiac rhythm. If QT is affected, the legs can try to give out.
If anything you are taking is a sedative, that can also cause the muscles to not work as well.
I had lots of problems with my legs and several neurologists were of no use at all. None at all. I was falling dozens of times a week and it was, to them, as if I was invisible - or exaggerating.
This is something your LLMD needs to know about. She or he can guide you as there are so many things that could be connected. The inner ear is just one place to start as lyme can really clobber the inner ear. A neurologist did finally make that connection and told me to get tested for lyme.
He could not treat me (nor could any MD in my state) but the neurotologist knew enough to lead me to get tested. My inner ear had been hit hard by lyme and coinfections - and by some meds - and by liver damage. The liver affects the ears. Really. More about that in the Tinnitus Thread.
Oh, while various kinds of vertigo are common with lyme, the inner ear can be affected in such a way as to freeze or delay legs even in the absence of vertigo.
For a hint as to if you are using your eyes more than your ears to maintain balance, go stand by the bed or a sturdy chair that you could fall back upon. Have someone strong spot you if you lean or fall forward or sideways.
Back up to the furniture but do not touch it or anything at all. Close your eyes. What happens? If you tip at all or are dizzy, that can indicate inner ear stress.
Same with looking at stripes, check or patterns with harsh contrast. If they bleed, bend or jump, that's a clue that the inner ear is off kilter.
Magnesium Deficiency also can cause trouble walking, spasms, "freezing" and all kinds of other things.
Low blood pressure, too, can be connected.
And, of course, nerve problems common to lyme. B-12, Fish oil are vital, in addition to magnesium, calcium and other minerals.
It's best to be in a scent-free environment, too. If auto exhaust or someone's cologne came my way, I went down. I lost control over all my limbs and speech but it could be rather spastic.
All this - whatever all is going on - can get better. But your LLMD is the only doctor who likely can help -- or other LL specialists. While not everything is lyme, it seems that only LL specialists are able to make the proper distinctions. -
[ 10-09-2010, 05:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler~thank you very much for this information. Wow, there are so many possibilities of what could be effecting me. Also I never knew about the magnesium. Just recently started taking B12 & B1 and I'm hoping that it will help. I do take a very low dose of Depakote twice daily for seizures. Asked the neurologist if that could be the culprit for my leg problems but he didn't seem to think so. Thanks again~Skippy
Posts: 13 | From Orange CT | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Skippy,
Every seizure med I tried, even low doses, turned my legs to jell-o. I simply could not make my muscles move to keep me up. Too many injuries.
Did they check your intracellular magnesium levels before starting you on the Rx?
Are you totally free of aspartame and MSG, even traces of it? That is very important. Also avoid L-glutamine or glutamic acid, other than as a very small part of a whole formula.
Magnesium is the #1 seizure control supplement - after treating infections, if present.
Heavy metal detox and considering parasites - also vital.
You need to have a consultation with a LLMD who can better guide you regarding tests. Hope you can find one who can assess for a full range of infections, not just lyme.
Lyme may or may not be the culprit but a good LLMD will help you sort it all out.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Thanks again for all this information. It is very helpful and I'm going to search for a good LLMD. I bought magnesium and will start that as well.
Posts: 13 | From Orange CT | Registered: Oct 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You are describing the exact symptoms of small fiber neuropathy. I have it, and it is caused by Lyme and Bart. It's an autoimmune disease. It is diagnosed by punch skin biopsy. It is treated with IVIG. A neurologist treats it.
It is hard to get diagnosed and treated because it's a relatively "new" disease, and the testing is new, too.
In the group Neuropathy on www.lymefriends.org, there is a thread on small fiber neuropathy where I have posted a number of articles. I posted them here as well if you can find the thread.
Your posts about not being able to feel your feet, dropping things, muscle twitching, etc are the exact symptoms!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy I really appreciate your post! I'm making an appointment with an LLMD because I need to go over all the info I've received from everyone. My neurologist is treating me with the Doxy but he doesn't seem to be knowledgeable about all the other things that come along with Lyme. I read some info about Small Fiber Neuropathy and want to know....it said that you have to be treated every 3 weeks or so with IVIG. How long before you feel better? Does it ever go totally away? Also do you have capillaritis at all? I have it in my right leg where the pain/weakness is and all on the top of my right foot.
Posts: 13 | From Orange CT | Registered: Oct 2010
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