Nerve conduction test

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Hi. Has anyone had a nerve conduction test relating to Lyme's, if so what was your outcome. The neurologist did a reflex test and he said I was sluggish so has sent for a nerve test. If it comes back negative apparently my gp needs to then refer me to a rheumatologist. The neurologist and gp are adamant its not Lyme's and have said its CFC but I'm not convinced. Just feel like I'm being passed around as no one knows the answer. I had a bite early last year which looked like a ciggarette burn, I didn't think anything of it until about a month later when I became really Ill and have been ever since. Doctors say your depressed but then I explain living like this would make any one feel depressed, feeling alone because you feel no one believes you so you don't have support from friends, and no close family. I try and push myself to lead a normal life but that gives people the impression I must be OK but I'm far from it, its a case of having to as its just me and my 2 kids with no one around to help. My kids are a great help around the house which is a blessing, mashing the potato as my arms feel like they will drop off when I attempt it. If I could afford it I'd like to be tested again privately but even that wouldn't lead to treatment on the NHS. Needs to be a lot more awareness here then maybe we could get some hope and peace of mind. Xx

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  • Posted

    Hi Zo,

    I'm sorry that you're feeling so ill. It's the not knowing that can bring you down and make you feel depressed, as well as the physical symptoms. Have you been tested for Lyme Disease?

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    • Posted

      Hey. Thank you for getting back to me. I know, the biggest thing that makes me down is thinking no one believes me, which probably sounds silly. If I'm not at my part time job then I'm asleep or crawling round the house. Your spot on tho, its the not knowing, but like I said I could be tested for peace of mind but if it was positive I couldn't afford treatment so its a case of what do you do. I was nearly tested at the begining of this year, the doc filled out the form I then went back to have it done by the nurse but she didn't know what color bottle to use so checked with another doctor which refused to let the nurse do it, just said it was ridiculous as we don't have Lyme's in kent. I was then tested about a month ago through the neurologist which was neg... By the looks of most are in the UK. Just all seems to much of a coincidence to have a bite and lots of symptoms but the docs lable you with CFS. Have you been tested/ treated for it, how long have you had it. Does it make you feel like your going mad. Xx
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  • Posted

    Zo,

    If you are found to be positive for LD, the treatment won't cost you much as it'll be through the NHS. The GP will prescribe you 28 days of Doxycycline.

    I was found to be positive for Lyme Disease last year and the 28 days of Doxy got rid of all my symptoms, although I have felt very tired, even though it's 12 months on. However, no pain and I can function fine.

    If you have LD, it will make you feel like you're losing it. I was diagnosed quite late and whilst I was going to and fro from the doctor, the more ill I got, the less able I was to speak in a rational way, which is why I wrote everything down before I went to an appointment. I also took my partner with me, as he could make notes and remember what the GP said, as my memory wasn't good at the time. A low point for me was when the GP offered me psychiatric help, although she did apologise for this when I was finally diagnosed by a duty doctor later on, and my test came in positive.

    Many Lyme Disease patients find it hard to get treatment. This is a very misunderstood disease and GPs are still not informed enough about it, although this is slowly changing.

    If you need support or advice, contact Lyme Disease Action. You'll find their website details easily. I found them to a great source of information and support.

    Good luck, I really hope you feel better soon. 

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    • Posted

      Great I will have a look at the website. I thought if you were tested privately and it came back positive then you couldn't get treated on the NHS. Not that I can afford the test. I also had a doc refer me to a mental health place, I can't think of the term they call it, I had a phone interview with them and they said they deal with people that are mentally unstable and suicidal so they weren't sure why the doc had referred me, I couldn't agree more. The memory loss can get embarrassing at times when your mid convo and compleatly forget what your saying, also very frustrating. So glad you got a proper diagnosis so you could be treated and fingers crossed the tiredness passes and it doesn't creap back. Thank you so much for your help, nice to speak to someone and not feel judged. Xx
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    • Posted

      Hi Zo.81. so sorry to hear that  conclusive diagnosis is so difficult with this LD.  to me it seems more than a coincidence that you were bitten  and then presented with these symptoms. btw what was the time lag between being bit & symptom presentation?

      i'm sure you've had all the 'standard' bloods  done i.e. Thyroid etc. i'm wonderinmg Zo.81, if you've had a b12 deficiency test & your Folate levels tested. this is  a simple test  that rarely gets done. however, CFS/ME/LD & b12 deficiency symptoms overlap.  when b12D is diagnosed & treated the results can be amazing.

        research by the  Pernicous Anaemia Society (PAS) have found that a considerable number of ppl have been misdiagnosed with ME/CFS when in fcat, they have low levels of b12 or/and Folate. also ppl with ME/CFS tend to have auto-immune anomolies.  PA is an autoimmune disease.  do have a look at the1)PAS website, 2)Chandy's ''B 12 Deficiency'' website & 3)healthunlocked is an EXCELLENT resource & support forum. also, ppl with ME/CFS tend to become b12 deficient over time due to malabsorbtion. 

       i'm really sorry to hear you're being 'pressured' into ''it's all in your head'' stuff from the Medics.  don't buy it.  

      all good luck to u.

      C

       

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    • Posted

      Thank you. Lots of info to read up on. I'm not 100% on the timings, In later march last year i noticed a thing on the bottom of my leg resembling a cigarette burn, it was black with a bright red ring around it then another fainter raised ring around that. I took a picture then forgot about it, I then went to Thailand a week later and when i came home I felt jet lagged but it got worse as the days went on until I could barley walk, I went to the docs and assumed I caught something out there. I had loads of blood test, came back iron deficiency and low folate and high white cells, I took iron and folic acid but made no improvment. Iv taken them again this year and the levels are now normal. My white cells are still high but as they haven't found a cause for this they say it must be normal for me to have high cells. It was probably about a month after being back from holiday that someone said to me about Lyme's, I had never heard of it then I remembered the mystery thing on my leg. I found it hard to bring it up at the doctors as I'm not one to self diagnose but felt I had to as I was having blood done every 2 weeks and not getting anywhere. Then they diagnosed CFS n I just kind of gave up and thought OK it must be that, maybe I am depressed but not letting myself believe it. But In my heart I don't believe it, its just how they have made me feel with their lack of understanding. I will take a look at all your advice thank you ☺ xx
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    • Posted

      Hi zo.81 - the 'timing' of the bite &  sympton presentation seem connected. however, it's interesting that your Folate was low and you were also had iron defifiency anaemia.  these are often concommitants in ppl with b12 deficiency (D).  do you happen to have a copy of the blood results.  if yes are the MCV & MCH within range?

       i'd definintely get that b12 test done. if low the GP will presceribe b12 injections.  as mentioned before, lots of ppl with ME/CFS/MS/LD tend to have low b12.  which this is  addressed it lightens symptom load meaurably. energy &  cognitive function often seem to be the first symptoms to improve. 

      the problem as you probably know with  the CFS/ME 'label' is, it's very diffiicult  to get proper investigaton. everything is put down to the condition & there's little support for ppl with CFS/ME and of course the stigma & lack of understanding from the professionals, the Medics and one's loved ones is almost as debilitating as the disease.

      all good luck.

      C

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    • Posted

      Wow so much information to follow up. As far I know I haven't had a b12 test, I will ask when I next go, if I haven't had one then I will ask for one. I'm also going to ask for a copy of all my blood tests since last year so I can have a look at levels etc. Thank you so much for your help and advice. Xx
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  • Posted

    If your gp Is that hesitant a private test will not influence him to treat you. They will say the test isn't valid etc... But it is a good indication for you so you don't get given a dustbin diagnosis of Cfs and believe it. I'm not saying people don't have Cfs but telling this someone with a potential history of lyme is dangerous. I have no faith in the nhs when it comes to lyme. There are many many tic born infections you could be suffering from. It's horrendous in this day and age we are battling for our health like this. Good luck getting the answers you need and more importantly getting healthy.
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    • Posted

      Thank you. I take it you haven't been sucessfull with nhs either, have you gone privately. I think with CFS because there is no test for it, its easy for them to lable you with it. I know some won't agree but I just see it as an easy way out and to stop you pestering them which is crazy if the person actually has something wrong with them. Lyme's does seem to be a lot more heard about now so hopefully specialist's will start doing their research. Hope your OK too ☺ xx
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    • Posted

      Yes have had no choice but to go private. Your absolutely right cfs basically gives them standing to be able to ignore any symptom you may have because it covers most things. A condition that they have no medical evidence even exists! It needs scrapping or at the very least the title does .... It's insulting!

      Get tested through lab in Germany they don't need your gp to refer. Let me know if you need any advice. Good luck x

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    • Posted

      If you don't mind me asking, how much did you pay. Have you paid for your own treatment as wel . Xx
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    • Posted

      About 150 for lyme test but remember if negative could still mean your positive lol. Yes I pay for treatment. My gp supports me in that they give me pain meds etc. they have their hands tied though mostly. Join all the support groups etc they have proved knowledgable and supportive and may help you knock some doors in the nhs X x
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    • Posted

      Ahh that's not as bad a i thought, some have said about 700 so thought it was out the question. I have read in the past that some doctors treat you even with a negative test so asked if mine would and they obviously said no we cant, I then pointed out they have prescribed 4 different types of vertigo tablets guessing that's what I had without a test, none of the tablets helped. Just don't get what the difference is. If its ok Would you be able to send me the details of the lab you used and how you went about doing it. Would be a great help. Xx
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    • Posted

      did you ever take a pic of bite.

      I ignored my bite as well. Then symptoms developed etc.. Doctors ignored/dismissed all my symptoms it went on and on I still had a faint rash after a while so took it to a fresh doc who I suggested about lyme and they agreed and told me the test was unreliable so treated me anyway. But the nhs suggested treatment is mainly inadequate after acute stage. So even though I found a reasonable doctor the guidelines she had in front of her to follow were just hopeless. Can't write the name of the lab on here, however if you look on lyme aid UK's website it's on there. X x

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    • Posted

      Also 700 would be for coinfections etc. if money isn't a issue (I wish) then go for the full range because you may test negative for lyme but positive for co infections.
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    • Posted

      I will have a look on there website, think the private route is out the question money wise, maybe not if its just 150 for the test without all the other tests but will look into it. Thank you for all your help and advice. Much appreciated. Xx
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