I too have paresthesia all over my body for 6i yrs. now. The Neurologist at Mayo Clinic did numerous test, spinal tap etc. and said that I have Immune mediated peripheral small fiber sensory neuropathy. I was on numerous medications and nothing helps me. I get cold sensations mostly, not warmth. Mostly in face 24/7 and legs. It drives me crazy. Mine started in my face first after a bout with the flu. Hope things work out for you. Mention this to your doctor. At Mayo they have special sensory labs there. I live in Wisconsin and I don't think any facility does here, so you may want to ask your Neurologist , as I don't know where you live- if there is a place that has sensory testing. An EMG will NOT tell you if you have a small fiber sensory neuropathy. Take care Laaz
Thanks for your input, Laaz. I live in PA and will have to see what testing facilities are available here. So, you have parethesias in your torso as well as your arms, legs, and face? I was thinking mine wasn't a peripheral nerve issue, since it's literally all over -- back, hips, chest, scalp, etc., as well as limbs and face. For instance, I just walked to work carrying a backpack, and now my back is all prickly.
I hope you find some treatment that helps. My sensations are mild enough that I think I could learn largely to ignore them. (If it's a progressive condition, that's something else). In contrast, your situation sounds really difficult.
Some additional info:
My magnesium levels have also tested normal since my symptoms began.
Over the last few days, I've begun to have some very mild dizziness.
I agree with the poster above. You describe small fiber neuropathy to a T. It is a tough diagnosis to get because many docs, including neurologists, have never heard of it. Do lots of research. Contrary to what many docs believe, small fiber neuropathy does not always start at the feet and may be patch or diffuse.
Also, small fiber neuropathy causes dizziness due to autonomic neuropathy. I have this problem and it is the WORST symptom I have ever experienced in my life. There are not many sympoms wost than not getting enough blood and oxygen to your brain, which is what is causing the dizziness in autonomic neuropathy. Please be very careful driving, as it is possible to pass out.
I have the same symptoms, and have found no relief, and no help from doctors. However, mine is seasonal. I'm fine all summer, but as soon as cold weather comes and I turn on the heat (heat pump), I start getting the symptoms. It seems to me that I'm allergic to something, but I don't know what! When the air conditioning is on (uses same vents, etc.), I'm fine. I've talked to heating/airconditioning people, but they don't have anything to offer. Sometimes the paresthesia is light enough that it's tolerable, but when it gets really cold and the heat stays on, it gets very uncomfortable. So frustrating! Some research shows that paresthesia can be related to heavy metals.
Thanks for your input, everyone. I've now seen a neurologist a couple times and undergone quite a few tests. The diagnosis I've been given is this: the paresthesias are being caused by a combination of a slightly herniated disk in my neck and an ideopathic neuropathy. I'm glad to know that it doesn't look like lupus, MS, a spinal tumor, or something like that, but I'm not entirely satisfied with the diagnosis. Of course, coincidences do happen, but a herniated disk and some separate, mysterious neuropathy appearing at exactly the same moment? Seems sort of unlikely to me.
Also, there's so much immune disease in my family. (I'm actually the only surviving person in my immediate family not to have an autoimmune disorder.) The neurologist I've seen here didn't seem to take immune disfunction into account as a possible cause for the neuropathy -- at least, if he did and had reason to discount it, he didn't mention it to me. He just told me that
- ideopathic neuropathies are really common,
- there wasn't really a good treatment,
- it would probably get worse slowly over time,
- it would likely never become disabling, and
- he didn't need to see me again.
I don't know ... at the time I was so relieved to find out it wasn't something life-threatening that I didn't really ask many questions. Now I'm sort of annoyed with him and wondering how to pursue it further. If the neuropathy does have immune origins, like laaz's, I'd like to know it. It could progress differently and there might be different treatment options.
.Hi there, I am from PA also. I have the same symptoms as you. My neuro did all the regular testing and now said that she wants me to head to Pittsburgh to have the testing done for SFN. The testing is done at UPMC. They will do the tilt table testing, sweat test, skin biopsy, etc... What area of PA are you from? I really hate that the cold weather is returning also, I usually have less symptoms in the summer months. Can't stand tight fitting clothes, etc.... I get feelings like there is cold water running across my skin, the face is the worst. I started with these crazy feelings after the flu also. Good Luck, Jen
I have paresthesia all over as well as muscle wasting and the only thing that has ever come up in testing is positive ANA. There are five girls in my family and so far 4/5 of us have some type of immune related disorder. My one sister has RA and sjogrens syndrome and the other two both have celicac's, My sister that has RA both her children have celiac. Other then our grandmother having MS all of our cousins are all healthy and then bam all of my family has all of these immune problems. There has got to be some relation to all of these problems
Hi, Jen. I'm in central PA. The nearest neurologists are at the Geisinger hospital in Danville. It sounds as though the neurologist you've found is much more interested in pursuing a specific diagnosis than mine has been, which is great. Does she think your neuropathy might be immune-related? Having it start up right after the flu makes it sound immune-related, doesn't it?
Have you been tested for celiac disease yourself? It can cause neuropathies and muscle weakness. I do think that immune disfunction runs in some families. For my family it seems to begin with my maternal grandmother, who had RA.
No, I haven't been tested for celiacs disease yet. My neuro said probably idiopathic SFN. My maternal grandmother had MS. She was diagnosed with it at age 60. I don't have no muscle wasting, or weakness, just strange sensory symptoms. Besides my gram, there are no more autoimmune disease in my family. Hope you find some help. Take care, Jen
I was tested for Celiac and it was negative. I was hoping I would test positive and be able to reverse some of the symptoms. I think some families just are more susceptible I was reading families with MS are more likely to have RA and visa verse as they think the gene that is responsible for both is the same or similar. Since the root of auto immune diseases is inflammation it seems like this inflammation appears in different systems in different people. Our mother was really sensitive and had allergies so bad she had to carry an epi pen. I have always been very sensitive myself and it seems my body is highly allergic. My problems seemed to start after I had an allergic reaction to a drug that caused muscle pain and swelling and then my symptoms slowly started after that.
I began having paresthesias almost 2 years ago. It came on very suddenly and "spread" from my hands and arms to legs and feet to torso, back of head and lips and tongue. Also had rapid onset twitching, buzzing,and tremors. I am an RN and had never been sick but had been working myself to death and not resting. After two years, 6 MRI's, a lumbar puncture and 40,000 blood tests the only thing that my Neuro can tell me is what it is not: Not B-12, not MS, not Lupus, not RA, not pinched nerves etc. Since I work at a hospital I have some amazing doctor friends who hooked me up with an Infectious Diseases doctor who teaches the interns and is really good. He ran a battery of viral titers on me and is convinced that it was an immune-mediated response to a Mycoplasmic infection. (It can present as an upper respiratory but can manafest in the CNS). In other words, my body was infected and began to fight the Mycoplasma and then the immune system didn't turn off like it was supposed to and attacked my CNS. A few things led him to this conclusion: 1. My Vitamin D level was very low and we now know that Vit D acts as an immune mediator. In other words, your immune response may go haywire if yours is not at least adequate and preferably in the 50-60's range. Being that your symptoms get worse in the winter time (when you are cold and your vit D levels are lowest) get your level checked. #2 It "attacked" like a spread starting in one area and continueing until it had encompassed the whole CNS. I continued to have very strong symptoms for the first 6 months, then they gradually began to lesson. Here I am 2 years later and they are about 90percent gone. I still have some tingling in hands and feet and one anke. Tremors unoticable (they were so bad I couldn't hold newspaper without shaking) and one or two twitches a day. I am on Lyrica 50mg TID, Cymbalta 60mg once a day both very helpful with nerve pain. I take B-12 (2000mcg), Calcium, Magnesium, C, 2000IU of vitamin D, fish oil and evening primrose oil all shown to help nervous system. I don't drink (except a glass of red wine once or twice a week) I use warm whirlpool baths to enhance circulation. I once read that nerves need 3 things to heal: Oxygen (increased circulation) proper nutrients, and reduced stress and lots of rest. My doctor says we should see how I am in another year or two, but I can live with it at this point, two years ago I thought I would jump off a bridge, it was that uncomfortable, painful and frightening. I hope I have helped!!!! Angela
I read your post and feel a ray of hope. Thank you. My story is bizarre also. I had a total hysterectomy at the end of January this year. In April I came down with Shingles on my left foot and leg up to my knee. At the same time I had extreme pain in my hip and butt but no rash. Since I have a back problem the doctors thought it was sciatic pain. After seven weeks I finally consented to a lumbar spinal epidural. The pain finally lessened but tingling started in the other leg and fingers. Then came terrible digestive problems. It took a couple of months for my digestion to straighten out and it is still "not quite right". My gastro thought I should treat the h-pylori I had been diagnosed with the year before so I took the "cure" Prev Pak for 14 days, 60mg prevacid, 1000mg biacin, 2000mg amoxicillin. As soon as I finished the meds (Aug 15) this awful tingling and numbness started in hands, arms, feet, legs, torso, back, face and scalp. The head is the worst. Had blood tests, CT scan, brain MRI, EMG testing. All they came up with is that I had some minor nerve damage on the left foot. I can't take Lyrica (itchy rash and swollen ankles). I had been offered Cymbalta but am afraid to take anything else.
In desperation I went to an alternative medical doctor. He took titers of herpes and zoster which were extremely high and found I had a very low Vit D level of 9. Also low cortisol levels from being stressed for so long. I am on lots of supplements, Alpha lipoic acid, benfotiame, multi vits, fish oil, curcumin, vit D. He said it will take a long time and after hearing your story I have some hope. This is the worst thing I have ever had. It is very frightening when it goes to my scalp. Georgia