Patchy sensory loss

Helen

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Hi all,

I just got to know something from my ME-specialist (who also is experienced when it comes to infections), that I would like to share.

I have searched for an explanation to my sensory loss and neuropathy, and seen a handfull of reputable neurologists, during the last 5 years. I have had two EMG and ENG tests that didn´t show either axonal or myeline damage. Yet the sensory loss has progressed.

You might know that when doctors are examinating sensory loss they have to kind of "maps" in mind. One shows dermatomes and one the distribution of the peripheral nerves. Neurologists were perplexed when I told that my sensory loss is patchy (and doesn´t correspond to any of the maps). It was clear that they didn´t believe me.

The ME-specialist told me that this is typical for Lyme disease. The bacterias cause an inflammation that affects the outer layer of the nerves where the sensory part of the nerves is located. The sensory loss will disappear after successful treatment.
 

Helen

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It started in my feet with a kind of tingling along nerves for some seconds. Then a numbness spreed out from my feet, hands and tongue very slowly during the last two years. Now there is an ongoing feeling of tingling, numbness and also burning pain on and off. You might have a look at maps with dermatomes and maps with peripheral (and cranial) nerves and compare with sensory loss if you have this symptom.
 

Tammy

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Mine started in the head with numbness felt in temporal region and then areas around the face...........then slowly patches around other areas of the body. Neurology tests proved useless.
 

Valentijn

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I used to be ticklish, but that stopped somewhat abruptly in 2008. I thought it was due to bad work shoes at first, but it's not just my feet which stopped being ticklish.
 

melamine

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I'm not quite sure where mine began, but when I started experiencing the kind of excitotoxic symptoms that inevitably lead to numbness, it was first in my lower spine and bowel area. As it spread throughout my body, numbness was always preceded by tingling, vibrating, and at its worst, an intense, excitotoxic electrical sensation in my spine. I now have chronic tingling-numbness-vibrating sensation that varies in intensity and specifics by location. I also get a fatigue tremor and unsteadiness in the dark. I have to be more conscious when walking down stairs and feel a kind of mild diffuse paralysis in my lower spine area. I've been asked how I could feel ("tingling and) numbness", as though the doctor had never had his leg or arm fall asleep. My EMGs were consistently "normal". Meant to some doctors that I was exaggerating, faking, etc.

I definitely do not have Lyme or any of its co-infections. I carry high titers of three viral infections and even though the neuropathic symptoms became more noticeable within about a month of a severe and unusual infection, there were occasional indications of nerve damage for about 6 years prior. They started to appear at a time when I was experiencing a number of other new symptoms, for which toxicity appeared to be the (main) cause.
 

Helen

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I used to be ticklish, but that stopped somewhat abruptly in 2008. I thought it was due to bad work shoes at first, but it's not just my feet which stopped being ticklish.
Did the treatment with abx that you are on decrease the symptoms so far? Are you on LDN too? (To newbies; both treatments are supposed to decrease inflammation that should be the cause of the nerve affection).
 

Valentijn

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Did the treatment with abx that you are on decrease the symptoms so far? Are you on LDN too? (To newbies; both treatments are supposed to decrease inflammation that should be the cause of the nerve affection).
It might have improved a bit. But the fiance doesn't try to tickle me much anymore, since it hasn't worked for so long :D I'm on 4ME, B12, and antibiotics. No LDN.
 

andre79

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The ME-specialist told me that this is typical for Lyme disease. The bacterias cause an inflammation that affects the outer layer of the nerves where the sensory part of the nerves is located. The sensory loss will disappear after successful treatment.
Uhmm the more i read about Lyme, the more i get convinced that that is probably what I have. I do have loss of sensory patches in my back. They come and go.

But I tested negative in the elisa. Both IGG and IGM. I haven`t tested other ticks diseases though. Maybe i should.
 

Valentijn

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But I tested negative in the elisa. Both IGG and IGM. I haven`t tested other ticks diseases though. Maybe i should.
The ELISA test has a high incidence of false-negatives - in the neighborhood of 50%. Elispot-LTT has a much better false-negative rate, at approximately 10%, but still has a very low false-positive rate as well.
 

andre79

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The ELISA test has a high incidence of false-negatives - in the neighborhood of 50%. Elispot-LTT has a much better false-negative rate, at approximately 10%, but still has a very low false-positive rate as well.
Sigh. I wish I was in a developed country so i could get accurate test. Maybe in the future, I hope.

I do have all the symptoms, and I took amoxicilin for a bad cough I had and even though first it hit me hard, it relieved temporaly some of my symptoms.
 

Helen

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Sigh. I wish I was in a developed country so i could get accurate test. Maybe in the future, I hope.

I do have all the symptoms, and I took amoxicilin for a bad cough I had and even though first it hit me hard, it relieved temporaly some of my symptoms.
The lab results may have changed to the better for a diagnosis after the course of penicillin. E.g. the IgM antibodies might have increased.
 

Mariah

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Hi Helen! Just wondering if you are getting treated, and if it helps this patchy sensory loss?
 

Helen

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Hi @Mariah,
Yes, I get a.o. I.V. antibiotics, but so far it is still there. I expect it will take some time for the nerves to heal. The tingling and burning pain though is gone.