NEED A DIAGNOSIS!! PLS HELP!!!

[mercygracious]

Can anyone help?  Does anyone have these type symptoms?  I started getting symptoms in 2003.  Started out with tingling throughout my brain and entire body along with alot of other parathesias such as pins and needles and burning sensations in head and body.  Got extreme fatigue from time to time and had extreme weakness in legs along with balance problems.  Also, would walk crooked, slur my speech, trouble with memory and concentration, felt like something was crawling in my head, pain in my eyes, buzzing and clicking in my ears, legs hurt, muscle spasms in legs, twitches throughout entire body and alot of others symptoms if we ever continue this discussion and you have the time I might elaborate on those.  But that is a quick , short list of some of my symptoms.   Last year I broke out with a rash on arms and legs.  Like I said I have gone undiagnosed since 2003 and no one seems to have a clue what I have.  It is so disheartening.  I just wanna give up some times.  But, I will tell you this I have most recently had the pains in my body as well. I have also felt like my nerves were being constricted at times and something was clenching something in my body.  Most recently I have alot of movement in my body along with vibrations in my legs.  After my rash I got extremely ill a few times and had to go to the ER but they didnt have a clue what they were even doing.  ER's are a total waste of time and money.   They will let you die.  I hate going to the ER for anything.  Anyway, what kinds of docs have you seen?  I think I have some type of vasculitis but can't get the docs to agree.  I am terrified every day of my life.  I am getting worse and worse and no one does anything for me.  I am feeling a strong pulse through out my entire body and am always aware of my heart beat.    My MRI's shows some small, white matter which some docs thinks mean something but Mayo doc doesn't think it means anything.  He says anyone can have white matter in their brain.  

[mercygracious]

I am sorry nikki!!!  I wasn't aware that you were going through something as well.  Want to talk about it?  I am here to listen if you do.  :)

[nikkiprew]

Well I dont know for sure what kind of testing they do on her, but i do know they kept switching there answers as well saying it was MS one day and the next it's Lupus. But some of her symptoms are breaking bones easily. Shes only in her  later 30's by the way. Weakness and being tried a lot. I dont keep up to date as much as I should. I think doctors have diffrent opinions because they are diffrent people. But yeah I agree that they should all try to keep practice similar. I this situation we do this, so on and so forth. I'm sorry that you have had a bad experience. I have as well and still go everyday for 15 years not knowing what is wrong with me. They still have yet to help one bit. I hope that they find a way to help you :) Best of Luck!

[mercygracious]

Hi nikki,

Is your step mom being treated for Lupus?  Do you know what kinds of tests they use to determine a diagnosis for Lupus?  It all gets so complicated.  I agree with you about the docs as well but you know what I really have a problem with is for as long as some of them have been in practice 20 yrs or more you would think they would have seen a little bit of everything on a daily basis but that just doesn't seem to be the case with them.  I think docs should be made to go to school every so often and get refresher courses to stay up to date on the latest illnesses.  I don't understand one doc telling you one thing and another doc telling you something else either.  Because if they are all trained to know the same things why then don't they know the same things.  Ugh!!!!!  I just get so frustrated with them.  Even the doc at Mayo !!!  I just couldn't believe what my experience turned out to be.  It was ridiculous.

[nikkiprew]

No I do not have MS but someone close to me dose and has suffered with it for many years. My Step-mother also has Lupus or at least they think she dose. They tell her yes and no all the time LOL. It dont seem that a lot of doctors know what they are doing and yet there are no sure ways to test for certain things. It all comes down them doing trial and error like the rest of us but the only advantage they have is seeing diffrent types of things on a regular basis and extensive testing when they are willing to use it. I'm sorry I could not be more help to you.

[mercygracious]

Hi there!  thanks for the response!  yes, I am aware of MS as that is the first thing I thought of when I started getting symptoms.  Have had numerous brain scans and continue to go to MS doc but he doesnt think that is what it is. He told me he thought it might be lupus but 3 other docs have told me NO!!!  So....by the way do you have MS?

[mercygracious]

thank you for your post.  Do you know what kind of rash your mother had and where it was located on her body?  Have there ever been times when she felt a general all over illness (really hard to explain) but where she had to go to the ER or anything?  Have you all looked into vasculitis as well??  That is really the only thing right now that I think my symptoms point toward but they refuse to give that diagnosis.  I think this is usually ruled out by having a biopsy on the affected area but getting them to do that obviously takes an act of congress as well.  You might want to look into that though....I think what your rash looks like and where it appears is a big indication.  How long has she been struggling with her symptoms?  Do you know how they started?  Does she have the same tingling, burning and itching in her head???  thanks for your help!

[nikkiprew]

What about a neurological disorder? Such as MS.....That can give you lesions in the brain. which would account for a werid brian scan. Also you get the pins and needles, Loss of body functions, Weekness, Fatigue, Those body functions can come and go depwending on things like the weather and how it will effect the MS. Did i mention painful, it is.  Hope this helps. My best guess so far.

[thedeloachs]

My mother has very similar symptoms as you. They recently tested her for Multiple Myeloma due to the rash...she expiriences extreme fatigue and weakness, muscle twitches and alot of pain throughtout her body. She also has a little white matter on her brain. She has a hemanginoma in her neck....good luck