@JustABlonde 

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JustABlonde

Neuropathy as a symptom of MS?

I thought I'd introduce myself... I'm in the "watch and wait", with symptoms that could be MS or peripheral, and which need to differentiate and show up (or not) on a followup MRI. From what I understand, I am statistically, at 37, in the age-range and fit the statistical profile for MS (my ACE score is 5 or 6, and from what I've read there is a strong correlation), and I am statistically very young for peripheral neuropathy to exist as a standalone disease. Background: I haven't had a regular GP since 2001-ish. I literally have never been sick enough to see a doctor since then, except for an ingrown toenail last year (left side), in 2010 for an infection, and in 2011 for a minor ear infection. Until September, I haven't been on medications since I was a teenager. I recently realized that I was accidentally eating the Wahl's protocol, since in 2002 when I went on the Atkins diet, I discovered that omitting most tomatoes and "nightshade" vegetables, beans, lentils, and everything else coincidentally on her diet, made my dermatitis 90% asymptomatic and helped immensely with my concentration and mood (I tend to be a bit hyperactive and have always had some issues with attention). May 19th, I woke up dizzy and with tingling hands and feet and feeling like I'd stuck my tongue and lips in hot coffee. I thought it was maybe a vitamin deficiency and really bad ear infection, but after the vertigo lasted over the weekend, my nurse friend convinced me to go to urgent care for a CT scan and make sure that I didn't have an awful ear infection. I was pronounced perfectly healthy and given Bonine for dizziness, which turned me into a zombie so I only took one dose. Following the advice of my nurse friend and a friend who was a pediatrician, when I didn't feel better the next day I made an appointment with a doctor at the local teaching clinic so that I could get in "ASAP" - in about 10 days and not wait a month or more. It was totally shocking when my doctor was more concerned with my feet and reflexes, and when he had his attending redo all the sensation and reflex tests on me. I got scheduled for an MRI and referred to a neurologist before my bloodwork was back. Right knee is hyper-reflexive. My big toe in my right foot is apparently totally numb, I have decreased sensation especially on my right leg and hand... but no noticeable loss of muscle strength or fine motor coordination. My bloodwork was completely healthy. MRI revealed 3 lesions (a punctate and a "small" one in a "significant area"), but not enough to diagnose MS because there is no "distance in time" and the lesions could be "benign" (specifically: "On this baseline MRI examination, there are 3 FLAIR/T2 hyperintense lesions: this includes a punctate subcortical lesion in the left medial postcentral gyrus, a punctate periventricular lesion in the right temporal horn, and a small periventricular lesion adjacent to the right occipital horn.") My feet were still tingling, although my vertigo had faded within a week, and my right hand had quit burning by the time I saw the neurologist (got in within a 6 weeks of symptom onset). Got more testing, including an EMG/NCS that revealed minor nerve damage in my right foot, but no muscle damage. I got tested for so much blood-born stuff that the testing center folks got to know me by first name. Since my symptoms came on suddenly, we were sure it was an acute disease like Lyme, AIDS, diabetes, or cancer. Luckily, I tested negative for absolutely everything, including the deeper IgG testing and testing for MMG or MAG antibodies (can provide a link to this, it's pretty new). At the end of September my right hand started burning again, worse and more persistent than before and harder to ignore. My tongue and lips again also felt like I'd stuck them in hot coffee (but this would come and go through out the day). I got into see my neurologist within 2 days and prescribed 20mg of Cymbalta, which after about 12 days helped me immensely (no more face tingling and 80-90% decreased hand burning)!! My anxiety is definitely MUCH more under control, because the physical pain was triggering it physically. My neurologist had to tell me that the burning and pins and needles sensations are pain, because I was not able to consciously interpret that as pain. I was really thinking that this was all in my head, and luckily my neurologist didn't think so! Anyway, my neurologist has not ruled out MS, has not ruled out autonomic involvement, or a diagnosis of small fiber sensory neuropathy... but says he wants to wait for my symptoms to differentiate. My official diagnosis right now is "idiopathic neuropathy". I'm continuing to have the vibrating sensation in both feet. About 2 weeks ago I started getting muscle facilitations in my left leg at night and in the morning, and while doing fine motor activities my left forearm painlessly tremored for about 2 minutes three times in as many days (not sure if that was significant, but I think it's the right word for the painless involuntary quick contracting/relaxing of that large muscle group that made my hand and arm shake). I also went thru about a 10-days or week where I couldn't seem to sleep enough, which is very unusual for me, and I am not sure if that is "fatigue", a side effect of medication, or fighting a cold (which is what I previously would have attributed that to). Curious what others make of this. Previously, in 2016, I had leg cramps for about 6 weeks that went away on their own, another 6-8 weeks of regular muscle facilitations in my legs that also went away, and face tingling last year for about 10 days, all of which I attributed at that time to stress or not sleeping enough etc. I am seeing my neurologist again in two days because I got the forearm facilitations or tremor on video, and am still having left side small-muscle twitching in my arms and legs. Anyway, no official diagnosis and curious to share... I am an open book with the types of testing I've had done (no spinal tap, although I fear that might get brought up soon). I'm researching initial symptoms like mine, how long to get a diagnosis, and
@Vixen

Hi @justablonde, great that you found this site. This is going to be boring, but I'm sure most people would agree that there are MS-type markers for sure, but there are other conditions that exhibit these too. For example, some of the symptoms I had pre-diagnosis were being investigated as potentially bing a reoccurrence of sarcoidosis as there is so much crossover. I am not expert, but am sure that an MRI with contrast and a lumbar puncture will be the surest way to rule MS in or out. Sounds like you're totally on top of things and you've clearly done lots of research. All the best, would be great to hear how you get on x

@BOK2Bjan

Greetings @just a blonde - sounds like you have taken your symptoms in stride. I agree that some of these vague things are often due to sleeping on a body part wrong, or coming down with a cold, or just a peculiarity we have to get used to. I blew past years of oddities that way! You do have symptoms within the MS differential, so it would be considered. There are other possibilities for sure! But temperature sensation abnormalities and unexplained numbness always need to be investigated. Fasciculations can be caused by numerous things - including nothing much at all - muscle fatigue, magnesium deficiency etc. I had those as a young healthy person. (A lot more now though!) I think it's often hard to know what we can ignore vs what needs to be checked out. But it sounds like you have a neurologist who is going to get to the bottom of things. That's so important - and not something everyone has! Let us know what you find out. I wish you the best! Glad you found this site. Jan