for people here who have sensory issues, please describe what it feels like to you. I am having burning sensations. These are pretty consistent in places (lower legs, back of left arm, trunk from time to time), but ebb and wane for the coverage in other areas.
Today have new spots: my right ear feels like it has warm/hot wax poured into it. Back of my neck feels like a severe case of sunburn, my cheeks feel like I am radiating, the sides of my tongue feel hot! (but to touch everything is just normal warm)... No other new stuff, except the feeling so tired at the moment....
Is this possible to feel like this???? (I am not diagnosed with anything....)...
Am so weirded out! Don't know if I can trust what I am feeling!!!!
I am currently dealing with "hot feet". I feel like I've rubbed aspercreme on them, because at times I have trouble determining if they are hot or cold. I have also had spots of heat or have felt like I had cold water splattered or poured on me. This feels so "real" that I've looked around to see who the culprit was, only to realize it was just a nerve thing. Several areas that were tingling this summer have now changed to a heat sensation.
I have had burning sensations for 3 & 1/2 years. It began in my legs, top of feet, thighs. Some days it feels like a bad sunburn, other days it feels like a blowtorch, and the worst days it feels like a trillion bees stinging me. It progressed to my spine last Dec., and the nerves sting. Yes, you can trust what you are feeling. Push for a diagnosis. It only gets worse without treatment.
I'm so sorry this is happening to you. I empathize.
I too have had the burning in my legs. Definitely felt like a blow torch on them. My face gets a hot burning sensation as well but I don't have a temp. Just recently I had an incredible burning in my ears but it came with extreme pain in my neck. The burning seems to come and go and I usually get it when I am experiencing some other symptom in an extreme state. The burning itself doesn't seem to last long and will sometimes come and go during one session.
I have had burning sensations for 8 years now. I have not yet been diagnosed with anything. All my brain and spine MRIs are normal, no lesions. I refuse a LP. My neuro says maybe small fiber neuropathy, I dunno. It comes and goes. These weird sensory issues started right after being sick for three months with nausea and insomnia. Neuro says maybe a post viral thing also. Hope you feel better. Have you tried Neurontin or Lyrica, its supposed to help some.
Thanks, nice to know I am not alone.... have a sinus infection (cold at the moment) which seems to have made things worse..... I can live with this - if only I wasn't so tired....
Feels like I've been rubbed with too much methyl salicylate (bengay, dencorub etc)...
My tongue is burning at the moment and my lip.... along with a spot on my thigh... and on my shoulder, and a few other spots....... and so the weirdness goes on... :(
hi, im also having burning sensations in my thighs it's been going on for vabout three years and now my face has it it's come with severe pain this month i was dianosed with fibromyalgia an also have osetoarthritis.
I tend to get it along the top of my thighs for the most part but on the other end I do tend to get and hot spot in my feet as a peace of metal burns though my shoes when I'm cutting metal with the torch lol
But I tend too get an icy feelings in my toes even when I were my bunny boots, I can feel my toes are freezing but when I remove them my feet are just sweaty and warm and trust me you don't want to be around when I take them off
I'm not currently DX either. I'll get a burning sensation on my left side (that's the side that's messed up). The sensation will be in my parts of my left arm and left thigh. The burning sensation reminds me of when you exercise. It's a deep muscle burning. Then I'll get patches of numbness and weakness soon after.
I've also had the burning sensation feel similiar to when something is really cold. My left arm and leg will feel cold to me, but to other people they are the same temperature.
I have a feeling in my heels that I equate to having someone stab hot knitting needles in them and it hurt's like he**! I have also had burning in muscles in my thigh after a severe muscle spasm and this moved down to below my knee eventually and has now disappeared.
Hi Sally and all members here
I have just found this forum and can I say "thank God I found it."
I live in Australia and am a 50 yr old female.
I have been going through the very long process of an unconfirmed diagnosis now for the past 3 years. Nobody can make their mind up what is wrong with me, the opinion just keeps changing...yes it is MS, no it isn't, yes it is, no it isn't...........aaahhhh!
I have had 2 MRI's both with contrast a year apart and both showed multiple scattered lesions of different sizes and shapes and in both hemispheres of my brain but mostly adjacent to the corpus callosum with no changes within that time frame.
I have also had a lumbar puncture, (negative) and a spinal MRI (also negative). I have had multiple blood tests all negative, no B12 deficiency, Lupus, Lyme, Thyroid problems. Nerve tests, visual tests, all normal.
I have pursued a second opinion and didn't get any sense out of that neuro either both saying "they are not sure." The 2nd neuro did say I have no active lesions at present,
I asked my Dr to send me off to a psychologist in case I am going loopy and because
I am getting nowhere fast with my diagnosis and I feel that my symptoms are increasing and my disability is also.
How refreshing to read the opening articles with the information on MS, MRI's and how they don't necessarily show up every lesion, symptoms and diagnosis of same.
I now know I am not going nuts and I really truly don't consider that my symptoms are all "psychological."
I thought I had found an ally in the psychologist who initially was great but nope, after taking in my MRI's ( he asked to see them ) he is no better than the others and is another text book junkie!
He said "your brain lesions could not possibly be producing any of your symptoms and it doesn't make physiological sense!"
I don't fit into the "text book diagnosis" and my lesions don't match my symptoms so therefore they are all now of the opinion that I have just conjured them up to get attention?
Do they really think I want to feel this way? Do they think I have nothing better to do than to surf the internet looking for symptoms so that I can run back and forward and have medical procedures that I hate to get attention?
The psychologist suggested that because I am not in a close relationship with a partner ( I don't have one ) I am compensating by making all of this up so that I feel that somebody cares about me.
Is he for real? I mean, come on!
If you had of asked me what symptoms I had 3 years ago I can only remember telling the neuro I was tired all the time, had become clumsy, was dropping small objects and of course the reason I went there in the first place was because of my facial pain and I was looking to get some type of better pain relief. Now I am really no better off and have the exact same facial pain only worse. I take medication but it is not very effective. My other symptoms have developed over time and were not present prior to this. When the neuro tested my balance I fell over, I had no idea I had this problem. Then he ordered an MRI of my brain. He told me later that he suspected I had lesions.
I am just so fed up with these people, they now treat me like I am just being a nuisance and am wasting their time. I just can't believe their attitude!
For what it is worth to any members here, I will list my "psychological symptoms"
Perhaps many of you have these...........
I know they can be caused by other problems but anyway here they are:
Numbness, pins and needles and burning in both my feet constantly
Pain and stiffness in my feet and legs especially first thing in the morning, very hard to walk legs and feet very stiff
Pins and needles in my hands and lower arms and sometimes numbness
Some facial numbness, sometimes I bite my tongue by accident
My speech has been affected, slurred words sometimes and other times I try to say a sentence and the wrong words come out. I sometimes write the wrong words and my comprehension is really slipping, can't remember how to spell words sometimes and have to hit the dictionary. Thank God for spell check!
Sensitivity to heat which aggravates all my symptoms and makes me feel nauseated and terrible, I just have to go to bed and rest
Occasional hot spots or cold spots
These "spots" seem to come and go and don't seem to affect the exact same spot each time
Sometimes one foot is freezing cold or boiling hot and the other is normal temperature, it can be either foot
Balance problems, "I will never pass the heel to toe walk the plank test" I always fall sideways to the right
If I shut my eyes I fall over. ( There is nothing wrong with my ears )
Clumsiness, I drop things or can't hold onto small objects and sometimes stumble when I walk ( no, I'm not drunk )
Dizziness and sometimes nausea and vomiting
Chronic Fatigue, this is a real shocker
Short term memory loss, so frustrating
Left side chronic acute facial pain ( no it's not my teeth or my sinuses or jaw )
Nerve pain, like someone pricked you with a pin, especially on the tip of my big toes and this comes and goes
Tremor in my right hand sometimes
I have had my left foot shake uncontrollably while I was in bed, this has only happened once
Double vision when tired and blurry vision often ( I have had my eyes tested and only need reading glasses )
Chronic reflux, I am on medication for this and have had an endoscopy
Hypertension ( I am under a specialist for this and it is under control )
The burning I know is just awful and I have it every day, mostly my feet.
I feel so sorry for you Sally and anyone else going through any of the above symptoms and not getting any answers. You're not crazy and neither is anyone else with these crappy symptoms.
I am just so fed up with being like this and not knowing what is happening.
I have decided to ditch the current neuro and try and find a specialist clinic for MS. They are few and far between here but I will just have to keep searching.
I don't know whether I will hit another brick wall but at least I will be trying to do something new and get a fresh opinion.
Good luck to everyone here and once again, I am so glad I found this site.
I hope to be chatting to you all again soon, good luck Sally.
I was recently diagnoses with MS last month after 11 years of symtoms (symptoms) that bounced me between multiple doctors. My symtoms (symptoms) are very similar to yours but would come and go sometimes lasting for only a couple of days and other times for months before completely remitting. About 2 years ago recovery was incomplete and I was left with cold/hot sensations on my left arm from the elbow to the wrist that is more intense later in the day. Still the doctors were clueless and one neuro even told me "as far as I can tell it is all in your head". This couldn't have been more insulting yet closer to the truth.
Last month I had a relapse that is quite severe fitting most of the symptoms you mention you are experiencing. So I was sent to a Cardioligist (why, I am clueless). He thought it may be a stroke so he ordered MRI with and without contrast of the brain. Low an behold, they found numerous lesions that show enhancement with contrast and are consistant in shape and locations to those of demylenating lesions causes by MS.
The next day I find myself sitting in a Neurogilist's office. He reads the report from the radiogist at the MRI clinic and says I have
"probably MS". A week later I had another visit with him after five day's of methyl-predinsone IV drop and complained of worsening systems. He ordered another MRI including the T-spine and C-spine. More lesions were found there and one of the brain lesions had increased in size but no new brain lesions were found. I'm thinking great, we can get a "clinical diagnosis". Nope, don't meet the McDonald criteria for clinical diagnsis yet since we don't have seperation of time (i.e. seperate MS relapses seperated by at least 30 days) he says.
Third visit I handed him medical records from 11 other doctors who documented symtoms (symptoms) consistant with MS over the past 11 years but failed to ever make a diagnosis. He changed the diagnosis to "Clinical MS".
I don't know about the regions of the brain your lesions were located and you didn't mention if it was the same lesions found on the first and second MRI.
It has been 5 weeks on this relapse with no improvement so he ordered another round of IV steroids which I started today and wants to start Copaxone treatment on my next visit. The neuroligist seems to ignore my complaints about memory and cognitive problems so I have schedule an appointment with another neuro and with a opthamologist later this month to test for Optical Neuritis.
My recommendation is to not rely on your doctors for all the answers. Get familiar with the McDonald (internantionally accepted as of 2005/6) criteria for diagnosing MS and question your doctors why they don't think you meet this.
This is what one of my MRI reports looked like:
Protocol: Sagittal T1 and axial T1, spin echo T2 and FLAIR sequences, as well as coronal and sagittal FLAIR through entire brain. An axial diffusion weighted sequence was also obtained. Then, following intravenous administration of contrast, sagittal, axial and coronal T1 weighted sequences were also obtained.
Multple lessions of increased signal are seen through the periventricular white matter and centrum semiocale bilaterally. The lesions are more severe within the right parietoccipital region and are seen to be perpendicular to the longitudinal axis of the lateral ventricles. The largest lesion is within the right parietal region measuring 1.3cm in widest diameter. Additional lesions are seen within the left side of the pons measuring 7.5mm in widest diameter and within the left dentate nucleus of the cerebellum measuring 1.06cm in widest diameter and the left aspect of the cervicomedullary junction measuring 4.9mm in widest diameter. None of these shows mass affect, shift of midline or post contrast enhancement. There is no hydrocephalus. On the sagittal FLAIR, no white matter lesions are seen within the corpus callosum.
1. Multple white matter plaques through the periventricular white matter centrum semiovale bilaterally as well as on the left side of the pons, left dentate nucleus of the left cerebellar hemisphere and the left side of the cervicomedullary junction. Findings are highly consistent with demyelinating plaques from MS.
If you are not getting that kind of detail I would return to the MRI clinic/radiologist and ask for it. They charge big money to do an MRI the least they can do is write up the findings in detail. MS lesions/plauqes occur in higher frequency in certain regions of the brain and spine and armed with a detailed report you can do a lot of research yourself to question why your neurolgist flip/fops on the diagnosis.
I found talking to a Neuro-Psychologist before have a "clinical" diagnosis a waste of time since they are only testing for cognitive and memory deficits and not trying to diagnos the cause. Once a neuroligist makes a diagnosis they become more receptive and everyone stops telling you "it's all in your head" implying you are imagining it all.
I hope you can take something usefull away from my experience. I know how frustrating this can be.
I was dx with Fibromyalgia 12 years ago...I know those symptoms and MS are very similar except for the MRI with lesions of course. I decided this year to start questioning my health issues more. I asked to see a neurologist, since so many people thought I may have MS due to my symptoms. I went to one ( I had a MRI a month before that for migraines, and it was clear) and he did the usual balance tests, which I failed, and in fact on one of them I fell on the ground. At the end of the exam, he looked at me and said I absolutely did not have MS, and that I just needed to work on my core strength and do some yoga. Yes, you heard that right, he told me to do yoga. On the way out I was handed a pamphlet for a psychiatrist. So, here is my question... should I even bother trying to get a second opinion, or am I just not accepting the fact that I just have FMS and the symptoms are the same. Some days I just accept it, others I worry that I should be more pushy about getting an answer, because what if it is MS, and I'm not getting treated for it? How dumb would that make me? I have tried all of the treatments for FMS and none have worked, I just take Ambien for sleep, Vicodin for pain and a muscle relaxor if I'm having spasms. I have had a fever ( 99- 100) for the last 2 weeks..usually I have them 1-3 days a week, ALWAYS. I also have the burning skin, needle pain, speech problems, stumbling, tripping over myself, etc. All those things that scream MS, but the dr. is saying is Fibromyalgia. I find this odd since up until last week, I never heard a dr. say anything about a connection between nerve issues and FMS..they always just said it was a "pain disorder" caused by serotonin issues. Sorry for the rambling, I hope someone out there has some suggestions.
Hi sluglegs (love the name, know the feeling!),
You may not realize you posted this on the end of a very old post. Would you please copy this and post it as a new thread? I know many of our members will be happy to comment on the poor treatment you received from this doctor.
On posts this old, many people don't bother to read these.
hi all im new to post, im a new MS partaly dianosed person
i have proplems off and on for about 13 yrs i started at 17, i went numb on right side of body, but because i had a tiny headache nurses decided miargines, 6 years later another attack right side but things were different, i could walk proply for a month and the dizzy spells drive me nuts, had MRI came back normal so i was told,
3 yrs after that i had another attack, this time leftside, (april 08) rung ambo got told anxiety attack and see GP, went to GP he took one look at me and sent me to hospital, at hospital got told miargaines, told them they were **** and send me somewhere else, next hospital rund and sent me private to specialist (nz we have free healthcare unless you wnt to pay to get faster result) i went to specialist and had MRI got told normal, i aid check my spine, they did, had a 4.1cm cyst compressing spinal cord, had it removed, ON day of op they were wondering which part to op on MY HEAD or SPINE, i then got told i had an 8mm drop called chiari malformation, so they op on spine, when recovered they sent me for another MRI to check the cyst wasnt doing the damage, It wasnt, their were no new lesions and but still white matter (very confused), i requested copies of every MRI and heart tests and everything they did, and well i learnt more from that,
They decided not to op on brain as to danerous, so they decied MS early stages , this was march 2009. since then my symstoms have gotten really bad and i have requested to go back to specialist, so hope this time they can give me poper answers,
I have diagnosed brain damage, probably caused by being given contraindicated drugs. These are executive functions but also cerabellum and brain stem implicated. I have balance issues, intermittent ataxia, clumsiness etc
For your interest most brain damage/injuries are diagnosed by neuropsychological (and neuro physio)testing, not by MRI. Many people with brain damage do not have a thing onthe MRI. THis is because MRIs show lesions, not dead brain cells.
For those wondering about balance problems etc, try the tests for co-ordination on U Tube. That will tell you if your cerebellum has been affected. people with ms have these burning sensations.
Please note - through all the specialists, 10 years, no-one has ever 'owned' or diagnosed my skin sensations and burning., I get the looks too, as if you would have 20 genuine symptoms and one wasnt. Basically they dont know, or many of them dont.
I see burning is associated with cerebellum disorders, so try those co-ordination tests. If you find them difficult, it gives you something to go back with.
I'm an 18 year old girl just diagnosed with multiple sclerosis March 24 2012, and my entire right side feels like its constantly on fire 24/7. The heat aggrivates everything but when you live in Vegas with 108 & above heat, i will tell you its miserable. anyone else have any luck helping with subsiding burning pains?
I to have burning. It's terrible in my whole left leg and all area of my intestine and stomach area, around my side and back. Worse is when it burns between the buttock area and around. Some days behind my ear and right cheek. Multiple Sclerosis is a cruel disease. I can't predict my days weather I will be feeling good or bad. Anyone know help to stop the burning.
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