I have similar sensations, but limited to my upper body. My neurologist finally concluded it was Trigeminal neuralgia and I've had it under control for a couple years now with seizure Meds. I hope you guys get some answers, I know the toll it can take on life!
No offense, but my doc is considering an MS diagnosis for me and my MRI is clear. She is a good doc.
No offense taken! I just assumed the MRI would have showed it. I will ask DH more about it (I haven't been to the Dr with him, and he isn't the best at relaying information) he just said they ruled out MS I am not sure what tests were done to do that, but I will make sure to ask. He is male (obviously) and hispanic so I know that puts his risk of MS pretty low.Â
MS isn't always obvious on an MRI. My mom had it. My understanding is the only way to get a definitive diagnosis is a spinal tap. Had he had one?
Post by badgerwrangler on Jan 4, 2016 21:23:38 GMT -5
Look up erythromelalgia. My mom and I both have it though I am in remission now. She gets crazy skin colour changes but I really don't. It's like a neurovascular issue and affects the small muscle fibres which is why the EMG comes back normal. Well actually everything comes back normal. It is very frustrating but when I flare, I am managed quite well by neurontin. My mom uses a combo of Lyrica and Cymbalta.
No offense taken! I just assumed the MRI would have showed it. I will ask DH more about it (I haven't been to the Dr with him, and he isn't the best at relaying information) he just said they ruled out MS I am not sure what tests were done to do that, but I will make sure to ask. He is male (obviously) and hispanic so I know that puts his risk of MS pretty low.Â
MS isn't always obvious on an MRI. My mom had it. My understanding is the only way to get a definitive diagnosis is a spinal tap. Had he had one?
Correct, you may or may not have lesions. Lesions can be on the brain, spine or even both. It is possible, albeit not as common to not have any at all.
I have had the feeling you described, the burning, and i have MS
apalettepassion.wordpress.com/ WHO IS BONQUIQUI!?!?!?!??!
"I was thinking about getting off on demand, but it sounds like I should be glad that I didn't"
MS isn't always obvious on an MRI. My mom had it. My understanding is the only way to get a definitive diagnosis is a spinal tap. Had he had one?
Correct, you may or may not have lesions. Lesions can be on the brain, spine or even both. It is possible, albeit not as common to not have any at all.
I have had the feeling you described, the burning, and i have MS
He said he has had two different doctors rule it out, but he has not had a spinal tap. I guess they were saying he doesn't exhibit any of the classic symptoms? He is not very good at describing stuff to me ha ha (or paying attention to what the dr says sigh)
Look up erythromelalgia. My mom and I both have it though I am in remission now. She gets crazy skin colour changes but I really don't. It's like a neurovascular issue and affects the small muscle fibres which is why the EMG comes back normal. Well actually everything comes back normal. It is very frustrating but when I flare, I am managed quite well by neurontin. My mom uses a combo of Lyrica and Cymbalta.
HTH
This appears to be in the extremities? He experiences it in the torso as well. I will add it to the list of things to ask about though! Thanks
Post by karinothing on Jan 4, 2016 21:34:11 GMT -5
fkaholly - That seems to include facial pain? He hasn't had any of that, but I wil add it to the list
carrotsmakemefat - Thanks for the info on the Lyme test. Do you know if it is possible to have Lyme with only the skin sensation and no other symptoms? He doesn't have any cognitive or fatigue issues.
Look up erythromelalgia. My mom and I both have it though I am in remission now. She gets crazy skin colour changes but I really don't. It's like a neurovascular issue and affects the small muscle fibres which is why the EMG comes back normal. Well actually everything comes back normal. It is very frustrating but when I flare, I am managed quite well by neurontin. My mom uses a combo of Lyrica and Cymbalta.
HTH
This appears to be in the extremities? He experiences it in the torso as well. I will add it to the list of things to ask about though! Thanks
It can be anywhere but it most common in the feet, then hands, then face. There are definitely people who have it in their torso.
I would encourage him to try a drug for nerve pain (neurontin or Cymbalta). I took a very low dose of neurontin and it definitely helped with the symptoms. The only real side effect I had was that I couldn't drink when I was taking them as the combo made me foggy and slurring.
It sounds like the all over pain my H has from fibromyalgia. I also think he should see a rheumatologist.
I don't know about FMS only because he neve has days where he doesn't want to get out of bed due to pain. I am not sure if that makes sense. Like it never impacts his daily activities. I feel like FMS impacts daily activities.
I was in constant pain for 18 months with an undiagnosed herniated disk. I didn't miss a day of work or give up any activities (not that I am/was "active"), because it hurt the same if I was in bed or pushing through the day. I think that contributed to the fact that I was brushed off by 2 medical personnel. They figured if it wasn't stopping my life, I must be fine.
If he hurts from the moment he wakes up, maybe he figures, might as well go on. Make sure he advocates for himself (or brings you to advocate) and really conveys that this is a daily and unending problem.
I would say fibromylagia. That is pretty much what I feel like everyday and it is especially bad in the mornings. I had all testing done and been to every doctor imaginable with this being the final diagnosis. Now, I have Hartington rods on my spine which plays the part of my back and some nerve pain but doesn't explain everything.
With that said, I still believe it is something else which has yet to be found. I think the fibro diagnosis is a catch all to some degree but after a couple of years of testing I have accepted it for the time being.
I started Lyrica almost 2 years ago and it has been a miracle drug for me and others I know and maybe worth exploring. After I take a dose in the morning I can actually get out of bed and has truly been a miracle. Dealing with pain pretty much your whole life takes a toll and think he should speak to his doctor about it. If he hasn't been to a pain management doctor I highly recommend he see one and go under their care.
I am truly sorry for him and hope he gets some answers soon.
How is his Vitamin D? Any recent traumatic events? Does anything help the nerve pain?
I was vitamin D deficient and it wasn't even that bad. I had BURNING on my skin near my back thighs it was awful.
Another suggestion is did he ever have shingles??
Postherpetic neuralgia (PHN) is a nerve pain (neuralgia) that persists after a shingles rash has cleared. If the pain goes, but then returns at a later date, this too is called PHN. Shingles is an infection of a nerve, and causes a typical rash. It is caused by the varicella-zoster virus.
Post by caddywompus on Jan 4, 2016 23:04:40 GMT -5
It sounds like Central Sensitization Syndrome. Basically, the nervous system gets super sensitive, and sends abnormal pain signals. If you google it, there are some good explanations. I am very familiar with it, and it's treatments, so please PM me if I can answer any questions for you.
Skin on fire like itching/burning? Sometimes a feeling like you are being pricked all over by tiny needles? That's what urticaria is like.
Not itching or burning. He said it is more under the skin I guess? Like when your foot falls asleep and you start to wake it up?
This sounds like MS to me. A very good friend of mine has it (this was her first symptom) but it took her almost a year to get diagnosed with it. Sorry it's a lengthy process. I would get 2nd and 3rd opinions as well