Can't take this anymore

[Melissa072]

Hope I don't sound too negative but I am sick of being sick, or knowing that something is wrong and no one able to give me any answers.
Last June I had terrible face pain, tingling, numbness, burning, twitching, cold spots, zapping, dizziness, this all lasted 24 - 7 then all subsided expect the numbness feel in my face and both feet, ankles,  today the dizziness remains, along with spots of burning over my body, especially in my back when I'm doing something, like ironing or washing the dishes, under feet sometimes I feel like I have stepped on an ice cube, and I even look, but realise it's another sensory thing going on, the tingling in my feet has gone but returns in the same spots in a hot shower or if I put feet into direct sunlight. I've had tingling coming and going in my groin now for a year, that I can recall.
G.P's tell me its not ms with neg mri, post viral, stress, 1st neuro tells ms it's not ms, mri clear and look you don't even have a brain tumour, she tells me, 2nd neuro tells me my chances of having ms are less than 3% but my symptons are very suggestive of ms, I just want to yell at all of them and state the obvious, that something is totally wrong, I have feared ms for a year now, and still have no answers, my L.P. in Feb was also neg. I have had the face pain before lasting only about a week, and have suffered with dizziness before too, last June was a big attack of whatever it is which is still affecting me now. I am due to go see neuro again in July. Can anyone tell me am I better to get 6 monthly repeat mri's or would 12 monthly mri's be better. I just want a diagnosis or something, anything.
If I did have ms and last June was my first big attack wouldn't lesions show up by now, please help, anyone, any advice will be taken on board............

[Melissa072]

Thanks everyone. It's just hard I feel so isolated here and don't discuss this with my friends, I don't want to be the person who always talks about their health......
The only G.P. in town fobbed me off twice last year and told me my symptons were due to stress so all I can do it wait to see neuro.

[Amyloo]

I am not saying this is what it is, but can you get to a good rheumy that can check out fibromyalgia?  They really do have alot of similar symtoms. And it can be just as debilitating.  Heather and I have both MS and fibro, and a few other people on this board as well,  Just a thought.  Love to you, Amy

[Heather3418]

If you have any NEW symptoms, it would be good to have the MRI repeated within a couple weeks of any new lasting symptoms.  Remember by new symptoms, I mean ones that seem to hang on...not ones that appear for a few minutes then re-appear in a day or so.  Symptoms that are hanging on.  If you have a big worsening of your current symptoms, this is also a good time to repeat the MRI.

I think because of the costs of MRI's, they are not done often enough.  Since they apparently not harmful to the body and have no lasting effects except for people with kidney disease (due to the dye used) then I don't know why they are not repeated when a patient is having new symptoms or worsening of old.  At least more often than they are done now.

I hope you feel better.  I have been in the land of limbo and to this day, I have never forgotten how awful and lonely it was....so I do feel for you.  As was said before, hang in there...it's the only thing you can do for yourself.  You know your body.  If something isn't right, keep seeking answers.  When the doctor's don't see anything through their testing, they seem to just chalk it off to nerves.  I HATE that.

Be well,
Heather

[cjacks]

Hi Doc

I know this Limbo stuff is very wearing ..  Do you have someone to talk to ? Some support?  It might help while you're waiting ..  Or post more here

you didn't mention having any of the  evoked potentials. I just had the VNG and the test showed I have abnormalities in CNS(parietal) and vestibular. So I have a reason for my dizziness.  Last neuro said I wasn't and said everything was probably stress.  ???

Push for some specific testing , if something comes back positive , its validation , plus the docs will do more to narrow it down .

I wish I had more for you .  Good luck with all of this..  

Hugs and prayers

Jo

[ohwild]

Hi there so sorry to hear of your problems. Limboland is the worse place to be and all I can say is 'hang in there' it's so frustrating ,scarey and painful, I really hope you, me and everyone else in limboland will get their dx soon.In the meantime know that we are all here for you.  :-)
Blessings
CJ