No diagnoses, symptoms getting more concerning

[boobugzeez]

Hi there,

I’m new here….. Feeling overwhelmed & discouraged. I’ve been experiencing symptoms since Dec of 2007. I felt as if I was getting a horrible flu, with terrible body pain, but the flu never came. Ever since that night, I’ve had random on & off issues. I’m only 28 & feel so old. My hands & feet tingle randomly, sometimes when I lay on my right side , the whole side falls asleep. I’m terribly fatigued, and lately, my balance is terrible- I randomly fall over, and my legs and arms feel so weak that at times  I’m concerned about even holding my baby.  My hands seem to get the worst of it lately, first they will start to feel stiff & “thick” feeling. Then they will turn all sorts of different colors from white to purple to red. I use a steroid on my hands to help with the pain & stop them from bleeding all winter long & that helps to take the edge off. (They think I have raynods)  I’ve noticed that once my hands start hurting, the pain will move up to  my elbows, then shoulders. I’ve also been getting headaches daily now. And where I wouldn’t be the type of person to take Tylenol at all, I find myself popping it daily now.
I’ve had every test done under the sun. They only test I have not had is a spinal tap. I live in an area  where unfortunately, you usually need to go out of town to get answers. I’m trying to get into a doctor in Syracuse, NY who will look me over one more time before they settle on the “fibromyalgia” diagnoses. I’ve never believed it was that, I just feel like its something more. Oh, and last month I experienced the weirdest issue so far. Deep down in my throat/neck, felt like I needed to gag.  I wasn’t sick, wasn’t even nauseas, but it felt like I wanted to gag at random times during the day. This lasted for about 3 weeks. Along with that, I experienced this weird abdominal spasm that didn‘t hurt, but felt almost like a contraction in my stomach muscles- that only happens in the shower & was accompanied by my back feeling rigid and my skin feeling tight. They checked my thyroid while this was taking place & it was completely normal.
I know I sound like a fruit-loop. But honestly, if I had the right answer, the answer to what is REALLY wrong, I could move on with my life. I’m stuck in this constant worry of what is wrong with me, accompanied by the pain and exhaustion, I feel like I’m loosing who I am, or who I was. L
So anyways, I’m really hoping to get in with this Neurologist in Syracuse, who can maybe finally give me some answers. Oh, and as a side note- my first brain MRI was done within 6 months of my symptoms  first appearing and was done with no contrast.  The EMG that was done  revealed “carpel tunnel”- which made no sense.  I said to them, then what about my legs since they has the same issues? The nurse said they didn’t know.

Well anyways, any suggestions or thoughts would be appreciate.

Thanks so much. -- Ashley

[Guitar_grrrl]

Hi, Ashley, and Welcome!

I'm glad you're going to see another neurologist.  Have you made the appointment, yet?  Have you had other MRIs after 2007?  Have you had MRIs of the C-spine and T-spine as well.  These are all useful tools to help the neurologist find answers.

Keep in touch, and let us know what's happening.
Feel Better,
Lisa

[Dagun]

Hi Ashley, and welcome to this wonderful forum. I´m sorry what you´re going through, it is difficult not knowing what is going on, I´m also been looking for answers in so called Limboland. I also have tingles all around, but that is also in so many other ms mimics. The hand pain and color change like you describe it, I´ve not heard off that being a symptom of MS.

You should also consider that if you have carpel tunnel in hands (making most of the symptoms there), there could possibly be something else going on also. Like I have learned in my search for answers there are SO many mimics out there so it will be great for you to get the neuro to help you figure this out. But you should try to stay possitive and don´t think the worst, because it could very well be something that gets better. Good luck and let us know how it turnes out. Hope you understand my English.

My best,
Dagun