posted
I was wondering if anyone has numbness in their legs and or feet all the time. Does the numbness turn into pain? If so, what do you do for it?
I am still waiting on my Lyme test and I should know any day now. The pain in unbearable at times.
I am trying to be patient but it is very difficult.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Maria, I am sorry to hear about your problem. When you say you are waiting for your test results, what exactly do you mean? My concern is that your test may come back equivocal or negative and you may not get treatment. Why do you think you have LD? Were you diagnosed?
In answer to YOUR question, I have had trouble with my feet and legs for the last 9 years. The problems vary. In 1997 the pain in my feet was so unbearable that I could barely walk. Paresthesia, or tingling, is an almost constant companion especially when exercising or in bed at night. I don't think numbness leads to pain necessarily.
I have peripheral neuropathy. I have been on antibiotics for many years (although not constantly).
I have heard magnesium is helpful, although I have not found any real relief with it.
Good luck, Maria! Make sure you get proper treatment.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I wasn't DX yet. I had a Lyme test (Western Blot) and I am waiting to hear from that.
I have been to a Neurologist also. He feels that I have MS.
The numbness is from the top of my thighs to the bottom of my feet. The numbness is there all the time. There are certain places on my legs and feet that are more noticale than others. There are also times when those places hurt more than other times.
I dont know if I am herxing but it sure feels like I am.
I am on antibiotics till after I get those results back. I should know any day now but for sure by Monday.
I hate waiting.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
What about taking Flexeril? That might help alot!
Posts: 1485 | From USA | Registered: Apr 2004
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Katydid
Frequent Contributor (1K+ posts)
Member # 1128
posted
Hi Maria,
At my worst point, I had considerable numbness (tingling and burning too) in my back, legs and feet -- to the point that I had to stop driving. One doctor thought that maybe I had MS but I went to an MS specialist who ruled it out after a lengthy evaluation. After I had positive Lyme tests (3 of them, plus positive tests for babesia and ehrlichia), I finally began treatment and have seen tremendous improvement. It's taken quite some time but has been worth it. I hope you find some answers soon. Best wishes, Kay
Posts: 1745 | From El Paso, Texas | Registered: May 2001
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I have the numbness from the top of my thighs to the bottom of my feet. There are patchy places that are worse than others. I do have the burning of the feet and I am having a difficult time driving. I can do short distances but any length of time can be horrible.
I am in the middle of getting tested for Lyme. I should know something by Tuesday.
I went to see a MS doctor also and my symptoms are consistant with MS. She feels that I have MS.
I have brain lesions and I had the Optical Neuritis. Information that I gathered on LymeNet, says that these symptoms are also consistant with Lyme.
I guess I won't really know till I get the Western Blot results.
Thanks so much again and if there is other information that you can pass along, I appreciate it.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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Another angle is that it may be Candida/yeast. If you aren't already, try avoiding carbs for a few days and see what happens. If the symptoms initially worsen (from die off) and then get better, it could possibly be from Candida.
Ofcourse, there is always the possiblity that it is a combination of both Lyme AND Candida.
I was (and so was my entire family) in that club. I now know that I cannot over do the carbs. As soon as I do, my finger tips start tingling. I am still fighting the yeast battle, but I am definately ahead of the game.
p.s. I didn't even consider yeast to be part of my problem since I didn't have the "typical" yeast symptoms ~ thrush, female issues....etc. But, after cutting out the carbs, many of my "Lyme" sysmptoms disappeared.
frenchbraid
------------------ Stay positive. Smile. People care.
Posts: 948 | From Northwest, NJ USA | Registered: Jul 2003
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posted
Go to your doctor and COMPLAIN! I go with a type written report on my complaint and questions and "demands". Maybe draw out an outline of your body and shade in the pain or numb spots. RAte them on a scale of 1-10. Docs always like the hard numbers. Go on a day when you are really feeling crappy, irritable and snappy. Tell him/her you are in living hell and won't leave until something is done!
Or you can go to your local ER and describe your spot in hell.
In either case, the doc will do something, if for no other reason than to shut you up and get you out of his door. Don't be intimidated by your doctor. They are there to do things that you can't. You can't prescribe or diagnose. They can. Make them. Make them want to do it. Be nice. Be polite. Be persistent. Above all, BE CLEAR in your complaints.
They get real excited (and into action)when you start talking about wanting to end the pain any way you can, even if it means your life...
Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Maria, please bear in mind that even a negative blood test does NOT mean that you do not have Lyme. Brain lesions can be caused by Lyme.
If a doctor put you on a course of antibiotics for now, perhaps it can be extended to see if you see a difference in symptoms.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Maria and Monica - thanks for your stories, they have made me feel less alone with my symptoms. I also have been experiencing a tingling, numb, sometimes painful sensation on the right side of my body. My doctor calls it paresthesia. It started in February, and has been off and on since then. My doctor ordered an MRI along with some blood tests. The MRI came back normal. Then she tested me for Lyme. Both the ELISA and western blot came back positive. I then went to a neurologist who ran some nerve tests in my arm and leg, which came back normal. Now maybe I should back up here, to the summer of 1994. It was 4th of July and I was so sick I could barely move. At the same time I had a bug bite on my back that had expanded to a good 4 or 5 inch diameter. So I made an emergency appointment with my doctor who at the time looked at the bite and said that it wasn't a lyme bite, although looking at pictures of lyme bites on the internet now I have no idea how he could have said that unless he was drunk. Getting back to my trip to the neurologist...he does not think that my current symptoms are from lyme. He doesn't believe that I have had lyme for 10 years because, in his words ``if I had lyme for ten years I wouldn't be able to run due to arthritis.'' He has not ruled out MS and said that a MRI only shows MS 90% of the time and scheduled me to have another in August. I am just finishing up my first treatment for lyme (3 weeks doxycycline), but am wondering if there is something else I should be doing. I guess I would like to find a doctor with more experience with Lyme. I live in the Philadelphia area. Does anyone know of a good doctor in the area or how I could find one? Posts: 2 | From philadelphia PA | Registered: May 2004
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danq
Frequent Contributor (1K+ posts)
Member # 2126
posted
suz0102, I made a topic for you, so people can respond directly. It's at new member suz0102
If anyone has some help for her, that would be a good place to respond.
Dan
Posts: 2420 | From Davis, California | Registered: Feb 2002
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danq
Frequent Contributor (1K+ posts)
Member # 2126
posted
Maria, as Monica already said, Lyme tests are extremely unreliable. Even the CDC and FDA say they should not be used for diagnosis. Diagnosis is primarily based on clinical signs and history. See U.S. CDC: Lyme disease: diagnosis
So many of us have been down that road, actually on what we call the "duck carousel" - round and round from one quack to another, until you're too sick to ride anymore.
Jump off while you still can raise your head. You need to see a "LLMD" - Lyme Literate MD.
We can help you find one.
Do not wait for the test results before starting to look for a new doctor! The Lyme is not waiting. It sounds like it is in your nervous system, and that means your brain too. No time to waste.
Dan
[This message has been edited by danq (edited 29 May 2004).]
Posts: 2420 | From Davis, California | Registered: Feb 2002
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posted
Hi, I also am not sure whether or not I actually have LD or not, waiting on blood tests. I have already reached out here for LLMD and found several in my area, now I just have to wait for the holiday weekend to be over so I can start calling these Drs to see who is under my plan! Anyway, I have definitely had the numbness feelings( tingling mostly) all over my body, the very worst experience was the also the scariest , I was in my car driving,went to roll my window down and my arm at the elbow wouldn't work! I freaked, it was the wierdest thing I've ever experienced, I just couldn't use it, I returned home and had to reach over with my right hand to get out of the car! Less than 15 min, later it just worked? It has never happened again, but my elbows and hips and knees and ankles and lower back and wrists and shoulders some days have so much pain I feel like I'm 107, and everyone just say's " it's the weather" ! I hope so , but I doubt it since I have never before been an "achey,headachey,numbness and pain all over complaining brat in my my 44 yrs, only after my most recent tick bite.I just wanted to say I am grateful to have the opportunity to read and participate in this forum because I feel just a little less nuts! By the way just for the record, I have posted before under the username Kathymcdonoughcollins, but had to re-register to change this too-lenghthy name Not happy as a complainer!
------------------ Kathy C
[This message has been edited by KMC8 (edited 29 May 2004).]
Posts: 3 | From Barnegat,N.J. USA | Registered: May 2004
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