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A little down
Hi everyone,
I think I told all of you that my neurologist sent my paperwork to the national institute of health to see if they would see me. Well I heard today and they rejected my case. I was really hoping they would see me. Actually, I felt like everything was hinging on them for a diagnosis. A little update on my condition. I had a positive skin biopsy from my neurologist in PA. Then I went to Hopkins, they did their own skin biopsy and said I don't have neuropathy. They said probably Sjogren's even though all my blood work was normal. The doctor there said I could come back once a year for follow up to see if my blood work changed. Now you can see why I really wanted to be seen at NIH. I think I would like to have another skin biopsy to see what it shows. I saw a doctor last year who was so rude and mean to me and said if Hopkins said it is not neuropathy then it is not. I'm so confused at this point. It sure feels like neuropathy. Of course my neurologist says his lab is reputable and the diagnosis is correct. If you have suggestions, I'm open to anything. I live in PA and would even go to another state. My muscle weakness is getting worse and I'm getting worried again.:( Hopeful |
I understand that let down feeling, I can really say I am feeling it too. I am sorry we are both feeling it.
I hope we both find comfort, healing, and direction. :hug: |
Hopeful:
Tests are not infallible, and IMO arrogant doctors aren't worth the effort dealing with. I haven't had the time to boil this stuff down yet, but it's here for the gleaning...
neuropathy skin biopsy false positive neuropathy skin biopsy false negative Doc |
Hopeful, I am sorry that you are dealing with this. The hardest thing in the world is having an inconclusive diagnosis and being disbelieved by doctors. It makes you feel so powerless.
I have also been seen at Hopkins. The doctor there basically agreed with my neuro that it was CMT and further testing was unnecessary since there is no treatment, but my EMG/NCS and skin biopsy both showed severe neuropathy. I do think they get carried away with their own reputation, the doctor claimed to have gotten a reflex from me, something no doctor in my entire life, even as a child, has been able to do. Neither my husband nor I noticed it, but he seemed excited about it. My EMG/NCS there was slightly less dire than the results from the local neurologist. He also found muscle atrophy. The most upsetting thing about being seen there was when the doctor told me I could discontinue IVIG as it probably wouldn't help. I have never been on IVIG. He didn't read my chart, evidently. He also seemed not to believe me when I said I wasn't taking it. Both neurologists tossed me back to my PCP for pain management. I would assume that your neurologist's test results are accurate. Skin biopsies are read in a strange way where the results have to be really bad to be positive. Was the Hopkins biopsy barely within normal limits? Mine does not use numbers but uses the word "devoid" of nerve fibers, so perhaps yours was similarly pass /fail? It is terrible that your own doctor is taking that attitude about the results from Hopkins. That is an unhelpful consequence of their reputation in this area. As much as they are told to believe the patient and accept their experience, doctors can't seem to help themselves from focusing on test results and being impressed by big names. |
Susanne hits upon an important point--
--that I've written about a number of times here (you can look up posts under my name if you'd like), but the essence is that the determination of what is a small-fiber neuropathy through skin biopsy is based on a very strict statistical determination--the McArthur protocols, so named after the lead researcher at Johns Hopkins who was involved in the age-based "norming" of both experimental and control subjects at Hopkins when this procedure was first being developed.
The strictness of the statistical window--you are considered to have small-fiber neuropathy if you are below the fifth percentile or above ninety-fifth percentile in intraepidermal nerve fiber density for age-matched "normals"--probably leaves a lot to be desired, especially among doctors not familiar with how the protocol was developed (and by that I mean most of them). One big problem is that since almost no one gets a skin biopsy to measure nerve fibers unless one has symptoms, there's no "pre-morbid" comparison for a symptomatic person. For instance, you may be considered normal if you are in the twentieth percentile, but who knows where you were before symptoms started? To me, if, for example, you've gone from the fiftieth to the twentieth percentile, you've got a neuropathic process ongoing--but almost no one knows their pre-symptomatic numbers. So, the chances for false negatives are considerable. This is why there is also supposed to be an analysis of the condition of the small fibers--are there deposits, swellings, excessive branchings, other signs of deterioration--included in the biopsy reports. Depending on who does the reports, though, these may or may not be there. One good thing about skin biopsy is that it is sufficiently non-invasive that it may be repeated at the same areas over time. If one has biopsies a year apart and a big movement in numbers is seen, that may be more enlightening than the absolute numbers. I've discussed this with neurologists at Hopkins and Cornell, though, and many do think the numerical criteria for definite small-fiber neuropathy are set too strictly. |
skin biopsy
Just wanted to let you know that a neurologist did not do my biopsy. I was having plantar fasciitis pain and the foot dr suggested doing that since I had such buzzing in my feet. She did this in her office. So just passing this on... the test did not rule this out 100% so the test was not real clear to me
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Thank you all so much for your responses. It is late where I am so my mind is tired and I can't respond the way I want too.
I'm going to look for thr results of both of my tests and come back to tell you. Thanks again everyone. This makes me feel better |
Hang in there.
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It's no wonder that you are feeling worried, tired and let down. I too have experienced that let down feeling. This must be beyond frustrating for you to deal with.
I am hoping for better days ahead for you. Take care! |
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When I first became ill, I looked to the day when I would be well again and could continue on with life as I knew it could be. Looking back, I knew in my heart something had forever changed but I was HOPEFUL that I was wrong. Now, I am adjusting to my "new normal" and trying my best not to let my health challenges rob yet another part of me, of my life. So, at the end of another day, just being able to say "I DID IT!" has to be enough. Don't lose hope! Maybe, just alter what you're "hopeful" for. :hug: |
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Thanks for the information. I suppose even John Hopkins can be wrong!:) |
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Hi, The Hopkins results did not give numbers at all. It just gave a written result.:confused |
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I love the way you put how you are adjusting to your new normal. I am trying to do the same. Just every now and then it gets to me. I'll be honest my head knows my life has changed forever but my heart and faith tell me you never know. You sound very much like me. In the past doctors have told me that I may have caught a virus or bacterial infx that started all this. I was in China and Mexico shortly before this all started. I remember being sick when I returned from China. I also have full body neuropathy. All but the left side of my face. As for the Sjogrens, I had the eye test and it was positive. Barely no fluid. I also had the lip biopsy. It was negative. I had it at Hopkins and was told I could still have Sjogrens. They said the lip biopsy depends on the gland they chose to take. One may be positive and one may not. Hopkins told me my bloodworm may show positive later. I neuro here believes that Hopkins is right and it is Sjogrens. That's what he believe is causing my muscle weakness. Thanks for your words of encouragement.:) |
I'm sorry it took me so long to get back about this. I got really sick. I guess the Enbrel lowered my immune system and I caught a virus. I was in bed for a few days and then just felt lousy.
I looked up my skin biopsies. The one from Hopkins does not give numbers in the results. It states that The distal thigh and distal leg results were: The epidermal nerve fiber density and distribution are within a normal age. The morphological appearance of the fibers is normal. The proximal thigh the nerve fiber density is within normal limits although there is marked fiber segmentation. The biopsy done at my neuro for left calf result value 3.54 abnormal is <5.4 low normal is 5.4-5.7. The left thigh result was 6.28 abnormal is<6.8 low normal is 6.8-8.0. Diagnosis was skin with significantly reduced epidermal nerve fiber density, consistent with small fiber neuropathy. These results came from Therapath in New York. I saw my neuro a few days ago and requested another biopsy to see if things had gotten any worse and he said no. He said it doesn't work like that and he is confident in his lab results and my symptoms are definitely SFN. Any thoughts would be appreciated. |
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Since my nerve biopsies show nerve densities within normal range (though I have the swellings) I haven't been officially diagnosed as having neuropathy. Good thing, right? But there has been the suggestion of a "central sensitization" maybe triggered from chronic peripheral nerve pain that perhaps is caused by a chronic virus, as I continue to test positive for it. Bad thing, right? As parvo virus b19 is medically documented to be a trigger for certain auto-immune conditions, I do wonder if something like that will eventually surface. I think I can speak for so may of us here who feel that if we only knew what it was that was raging through our bodies, we could perhaps deal with it a little better. I find myself looking behind every tree and under every rock because being in this much pain and feeling this ill just can't be idiopathic. But, so far literally hundreds of vials of blood and numerous diagnostic procedures have only turned up the parvo virus dna; some perivascular inflammatory infiltrates; and small to medium sized axonal swellings... nothing to stitch together a firm diagnosis and corresponding treatment. Hopeful, what symptomatic treatment/RXs are you taking? What has been your experience with them? Any input is appreciated as I'm facing the fact I may have to ask for bigger guns than the Gabapentin/Nortriptyline. FYI.. just yesterday at the grogery store I saw a bumper sticker that said, "Choose Hope." I thought of you and me, really. God speaks through strangers sometimes and draws other strangers together for comfort on a web site. I hope "Liftyourhands" is checking in, too. God's comfort and blessings to you. |
I have only had a skin biopsy at Hopkins (twice). Both times there is no density numbers at all (just within normal limits), yet description of fiber condition is very detailed and shows significant damage
I was frankly pretty disappointed that the institution that developed the test (I believe it was Hopkins) doesn't even provide the density numbers in their results...which would allow progression to be noted, even if initial tests in normal range (it could be informative to see if borderline or heading in the direction of abnormal). However, Hopkins did do a fancy MRI/MRN to look at the dorsal root ganglia and found bilateral damage & enlargement/swelling. So this also led to the explanation of the neuropathy diagnosis. I do plan to get another skin biopsy this summer (will be 6 years from the last one) to see what has changed. As for the Sjogren's, I have this even though my blood work has always been negative. My biopsy was positive, but only by means of so much damage there was nothing but scar tissue left. My doctors (several) believe my negative blood work is due to my deficient immune system...that not enough 'antibody markers appear' because there isn't enough antibodies to begin with. A diagnosis is only good if it means a change or different possibilities in treatment options. I thought you were receiving IVIG. If you still are, you are receiving the best option available for autoimmune based neuropathy. If it helps, then I wouldn't worry about pinpointing the neuropathy. If it does not help, then yes I would understand you wanting more info to see if you might benefit from other options...for other types of neuropathy. |
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The first neurologist told me my EMG/conduction studies showed definite small fiber neuropathy. The second looked at her test results and disagreed but said my description indicates neuropathy-that the testing does not necessarily show the damage until it is beyond repair (which may be good news for you). Hopkins said their EMG/nerve conduction shows nothing but the skin biopsy showed innervation of sweat glands leading to small fiber neuropathy symptomology. And also that my bloodwork indicates Sjogrens but my lip biopsy came back negative. Since the treatment in either case is to manage the symptoms, at this point my action plan is to manage the pain and fatigue and try to pinpoint and avoid triggers. The doctor I have now, who I LOVE, says many patients have "clinical" neuropathy that does not show up on any testing. So there you go....this could be your case as well. It is SO frustrating and I feel your pain (literally). Hope you find this forum as useful and supportive as I do :) |
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It's funny you tested positive for the parvovirus, I I did to before this all started. They said it could have been from years ago and had nothing to do with my neuropathy. I'm glad to hear your muscle weakness has gotten better. Mine also started with having trouble going up the stairs. Then it started to be difficult to stand to long in one place. Now I'm staring to have trouble when I walk from the living room from the kitchen. Once I stop for a few seconds and wait I can the start to walk again. It's strange walking doesn't bother me. My current Rx is cymbalta, tramadol, synthyroid, supplements, IVIG and enbrel. I don't think I'll be staying on the Enbrel. I have a skin reaction that gets bigger and bigger with each injection. I tired so many Rxs. The cymbalta really helped. The IVIG helps too for about a week. Maybe talk to your doctor about one of those. I do sometimes feel the neuropathy on my tongue but not always. I know I just have to learn to treat the symptoms and usually I'm pretty good at it. Every now and then when a new symptom comes up or one of my symptoms worsen I feel the need to try to figure it out again. I hope we all get answers and/or relief one day. I'll have to keep praying and enjoying life as much as I can!:hug: |
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I've never thought about my deficient immune system causing lower antibody markers. That is a very good reason for negative blood work. You are right. I am getting IVIG and it does help somewhat. My doctors are now considering raising my IVIG to every two weeks. I'm ready to give that a try. I just get really worried about my leg weakness. Please let me know if you get another biopsy. I'm interested to know if anything changes. Thanks for your help!:) |
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I find it so tough when the doctors disagree. Then I don't know who to believe. It all gets so confusing and frustrating. It does help me to hear others say that the treatments I am on would be the same for most of the things I have been told I may have. By the way I was told at Hopkins when my lip biopsy came back negative, that it may have been a different result if they chose a different gland. Apparently, some glands will show it and some won't. Thanks for the support!!:) |
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