Burning Sensations/parethesesias? Opinion/help?

[Udkas]

Hi Guys,
I apologise in advance for venting, thinking out loud and being afraid and the length of this post.

I am curious about people who are diagnosed with MS what there burning sensations feel like? How long they last and if they are fleeting on and off for weeks or there as a permanent thing for weeks on end.

Why I am asking,

My burning sensation in my perineum has lasted for weeks without really relenting, so much so I was convinced I had a UTI, but I have had numbness there before too. With my burning in my perineum I also had burning sensations in my groin and in my legs and my back.  My perineum burning was there day and night, that is why I thought I had an infection, my back symptoms come and go throughout the day but are always fleeting, there one second gone the next, a bit like lhermettes, something that repeats itself throughout the day. Almost like a really bad sunburn feeling or something. I do have other problems as well but this is my problem at the moment.

My GP has told me to go back to the neurologist and has sent a new referral, in part I want to go but the other half is scared.  I want the best of care because my burning is making me miserable, sometimes my leg is so sensitive to touch it becomes painful and my privates the same. Does my burning sound like what others get with MS?

What am I scared of:
I have had normal MRI and normal LP (2) and normal nerve conduction studies and normal blood tests.. latest MRIs on T3 machine. 7 MRI to date over the years, spinal incl. thoracic and cervical and brain, with and without contrast. MRI scheduled again for March, 2010.  Current Neuro reckons that I have had an attack of Transverse Myelitis, he now seems to think it is reoccuring.. has not ruled out it changing to MS. My old neuro thought it was MS but changed his mind when it didn't reoccur and MRI didn't change after a couple of years... I think he then too thought it was perhaps a single demylination episode.

My fear is if I get scheduled for a MRI and it's yet again normal that the Dr might change his mind and I will feel then like I have "no name for my symptoms" and I will go through the question process I go through every time I have a normal MRI.  
Questions:
Why do my MRI always turn out normal but I have so many symptoms?

Am I just a fruit loop?

Are my symptoms caused by anxiety, migraine, hypercondria etc. etc.

Am I talking myself into this...

I get angry when my MRI is normal as I feel frustrated that I have all these symptoms and no real answers but if I get an answer then I will prob be unhappy too as it means things have progressed.

If I wait until March it will be just a routine check because I was having symptoms, he said he would monitor me while I continued to have symptoms... his reasoning for my mri being normal is that spinal MRI is not fullproof and that with TM you get left over symptoms and that was what he thought was happening but now it's progressing I think he is expecting eventually for MRI to show but then if it doesn't?

All My Symptoms

I have had bladder issues, urgency and incontinence and now I am not emptying properly,
Sensory stuff like pins and needles, burning, electric shock like stuff and numbness prickly feeling
Leg has felt heavy like it has gone to sleep,
vertigo but neuro says that is from migraine.
tongue numbness as well but I do wonder if that is also migraine as have had headache with that.
Can migraine cause burning sensations in the perineum? Could anxiety do this?

I am so miserable at the moment, and yep anxious too as I have had enough of it all, the Gabapentin has helped but not enough, it is such a horrible place to get burning, I want to go to the neuro but I don't...see I am going in circles here.

Thoughts and input welcome and appreciated,

Thanks for allowing me to rant and vent,..
ahhhhhhhh feel much better now.

cheers,
UDKAS

[Valerie64]

Hi Udkas,

I've got a burning sensation in my left knee (it's always the left side), had it for 3wks now and it's more noticeable or rather stronger when I'm tired, it doesn't feel hot to touch it but it's burning to me (sounds daft doesn't it?) also had (for about 2 wks) the sensation on the inside of my thigh that eveything touching it was wet, my Dr says it's another symptom and to tell the neurologist (first visit in 2 wks)

Val

[Udkas]

Hi there,
In answer to your question I have an abnormal neuro exam.  I have ankle clonus, babinskis. hyper reflexia,

I am not sure about the others, not sure what they are.  My neuro whom I have seen about 8/9 times in the last couple of years always does the hammer stuff, makes me do finger to his finger test, pulls the ends of my fingers? Go figure what that's for, runs the pins over me( I think it's a pin), does the babinski stuff and makes me stand with my legs apart and then together but I always wobble and start to fall when I do that, also tandem walk I struggle with a bit. Oh and strength stuff, I always have to push against his hand etc...
Mind you my first neuro visit he did everything from checking my facial muscles to eye tests etc... but he seems to concentrate on the same things now. Apparently my reflexes are very hyper.

He seems to think I have a lesion in my thoracic as I have a clear sensory line below the thoracic and he also thinks cervical and brain stem but my MRI is normal...

So I don't know or understand why he thinks this, I keep thinking it's all migraine or something.

Cheers,
Udkas.

[Guitar_grrrl]

Hi, there!  I was diagnosed only 3 months ago, but I've had burning paresthesias for over 15 years.  Mine last anywhere from a day to a couple of weeks (I'm sure, now, I was having a flair at the time).

I have a bunch of old lesions on my brain MRI, but my C-Spine and T-Spine MRIs and LP are normal.  This is in spite of my neuro being convinced I've had a spinal cord injury.  His explanation is my lesions are just not big enough to see on even a 3T machine.  He gave me a diagnosis based on the brain MRI, and a very positive neuro exam.  

Do you have any abnormalities with your neuro exam?  Babinski's sign?  Hyper-reflexia?  Hoffman's sign?  Romberg's sign?  Just curious...

Sending good thoughts for relief ***
Cheers,
Guitar_grrrl

[Erin0313]

Kathy,

   Hi! I just wanted to say hi and let you know that I am thinking of you and sorry that you are suffering :(

  I get burning sensations that come and go. From the waist down (and my center, yuck & ouch). Sometimes it lasts minutes of complete numbness and sometimes days of tingling and burning. My doctors say that it is nerve conduction problems. I take 1800 mg of neurontin like you. It helps but not enough.

I have the anxiety also. For that I take xanax and it almost always does the trick. If you are not already on it, maybe ask your doctor.

Call the doctor!!!!

Hugs,
Erin :)

[Eyesnlegs]

I was dx last year after 20 years of what were described as mild sx - if you can call losing your sight and ability to walk mild - lol.

I am responding to your appeal but cannot talk about 'burning' as I do not get that at all. However, I do get tingling, buzzing, zapping and lots of pain!!! Mine varies and it can be instantaneous and gone or can linger longer so I don't think there is an answer to your question.

My MS Specialist nurse assured me that burning, tingling, pins and needles, pain and many other of the strange sensations we get were all part of the pain problem as they were all caused by false signals and damaged nerves. These can react in very individual ways and therefore need treating in many different ways.

Although many MS sx are similar, everyone's MS is very different and therefore yours may not relate to anyone at all. I hope that someone answers who can help you more than I can as I am still learning about this too. Yes I know after 20 years I should know more but as I pointed out I was dx last year until then I was a neurotic hypochondriac :-)

I agree with the others you need to go whatever the outcome you really need to get answers and treatment for this - be brave. I am trying hard to wish you loads of strength from over here. I can't imagine how uncomfortable what you describe is.

(((hugs)))
Pat

[Udkas]

Thanks for the replies guys but would love some more on the burning stuff.

I am summing up the courage to make the call to go.

ANYONE WHO IS DIAGNONED:   Do your symptoms come and go in a fleeting sort of manner?

From my understanding from reading Quix's post about MS it does not behave in this way, hence why I was asking people with MS to respond about their symptoms.

I get burning on and off throughout the day, like I guess how people might get sciatic nerve pain etc., my hand might tingle for an hour then disappear and then return an hour later.

I am also contemplating seeing a migraine specialist but will have to travel over seas to do so in the hope that maybe this might help me, I do believe some if not all of my symptoms are migraine... hence the normal MRI.  Although my neuro disagrees with this.

Anyone had acupunture? Naturpaths?

Cheers,
Udkas.

[Fluffysmom]

Hi there, I'm sorry that you're still suffering from all this; with all the questions and anxiety on top of the pain.

I wish the lidocaine gel would have helped, or any of the other things you've tried.

If you want my opinion; go see the neuro.  Migraines could cause some of the symptoms, but I doubt the burning in the perineum is from that.  TM probably could, but I'm not doctor.

In the absence of a diagnosis, an effective treatment is the next best thing to hope for.  I've also been told that spinal MRIs are the most difficult to get a clear picture; maybe something would show up.  It sounds like your neuro isn't giving up, since he's willing to do regular follow-ups.

As for other people having the burning sensations; I'm not diagnosed, but I have a lot of burning sensations.  Luckily, not often in the perineum.  

However, yesterday my right hip started hurting, then my right thigh started burning, which then spread down my leg (my calf was on fire!), and into my foot.  My lower back had a sharp burning pain, and when I bent forward, I'd almost fall over from pain and faulty nerve signals.

I have one bulging disc in my lumbar spine, but nothing to cause what happened.  I felt like I had a burning tourniquet around the top of my right thigh.  The burning.pain spread up under my ribcage all the way around my right side.

I took my regular Vicodin; didn't touch it.  I took my evening 100 mg. Lyrica; nothing, likewise with my bedtime 5 mg. of valium.  I took 100 mg. of Tegretol, and after an hour, the pain calmed down enough to let me sleep.

I'm wondering if your neuro would consider Tegretol, at least at night?  Mine helped calm things down enough that I could run some errands today, though now its burning again and making it difficult to sit at the computer

Mine was prescribed for trigeminal neuralgia, but last night I decided that nerve pain was nerve pain, and took a relatively small dose, and am glad that I did.

Anyway, I'm hoping that you find some relief, and some comfort in knowing that you aren't alone and that we care.

Hugs,

Kathy

[goofysmom1]

As Heather said....just go.  

I have not had burning in that particular spot, but have had some loss of sensation - so I can only imagine what you are experiencing.  The burning I get is on my left arm - and it has been so bad that I thought for sure that my skin was hot - it wasn't, but I checked anyway.  I did not have any luck with the gabapentin or the nortriptyline for my burning/numbness/tingling...they worked, but the side effects were awful.  

As you know, I am not dx'd, but am in the "highly suspicious" category for now.  I say that as long as your doctors are willing to treat your symptoms, and continue to monitor you (with regular MRI's) - then you should keep on trying to treat these symptoms.  

Obviously, if we have MS, a diagnosis would be great so that we could get on the DMD's as soon as possible to slow the progression - but if they are hesitant to diagnose, then the next best thing is to at least be monitored and have the symptoms treated.

Sending you hugs and wishing you relief!

Chrisy

[wadeheather]

I have felt the same way.  Just go.  You have nothing to lose unless you don't go. Obviously they are concerned about something happening or they wouldn't schedule you for another MRI to check.

I have not had the burning/tingling in that particular spot, but I have seen posts that others have.  Hopefully someone will see this post with the same experience.

Feel better,
Heather