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Jlau89

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Aug 21, 2014
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Undiagnosed
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Country
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State
KS
First, hello! My name is Jen, and I have been in the precess of getting diagnosed with some sort of Neurological disorder for about 6 months now. My Neurologist continuously tells me "I think it is Fibromyalgia" every time I see him. He has done this since the first day I saw him with my symptoms.

Obviously I am not a doctor, and he is much more educated on the topic than I am, but I also have this sinking feeling that he is rushing into a Fibro diagnosis because he doesn't believe a word that I say.

I presented originally with a terrible type of pain that I have been referring to as "nerve pain" because it is a shooting and radiating pain that lasts for about 10-30 seconds and is so intense it stops me in my tracks. While this had been bothering me for a while I just ignored it, attributing it to stress.

That is actually a common theme for my symptoms, it was always caused by something else.

Chronic debilitating fatigue, it was because I am a mother of 2 small children of course I am going to be tired.

Arthritis pains and back pains, it had to be due to my job, I am a mechanic and perform manual labor on a regular basis.

Getting dizzy randomly throughout the day, I told my self that I should just should be careful when I stand up, I am changing positions.

Numbness in my feet and hands, the simple explanation was that I had poor circulation.

These excuses went on for 3 years, I attributed it all to something easy, and never drew parallels between everything. That was the case until my mind started to go. I am 24 years old, and I forget everything. It started with little things, like where I put my car keys, where did I set my wallet, and where did I park my car. Then, It turned into big things, things like "Did I drop my daughter off at school?" and "Did I remember to annotate those aircraft forms". This was when I initially went to my doctor for an evaluation.

He did the basic memory tests, which I did fine on. The day I saw him, the tremors that I had been ignoring were so violent and obvious that he couldn't help but notice. At this point I was diagnosed with Cerebellar ataxia and sent to get an MRI. At the beginning they were almost positive that I had MS and started to prepare me for the worst. When my MRI came back clean everyone was lost.

I have also had a normal NCV/EMG for the "nerve pain" and muscle twitching.

I am waiting on my referral to go through for my Neuro-psychiatric testing and I am going to go from there.

Now I am sitting on the inevitable Fibromyalgia diagnosis, with rashes that show up for no reason, constant fasiculations, losing moments in time, and symptoms that don't coincide with the diagnosis at all.

I suppose I am looking for support in the process and reassurance that what I have described DOES sound like Fibromyalgia.
 
Sounds a lot like mine. I had my MRI yesterday and an EMG 2 weeks ago. EMG was "normal" per Dr. Whatever "normal" really does mean. They have my MRI results and I am expecting a call tomorrow. I forget things "brain fog". I had it with Celiac Disease, which I have. And now they say I have fibro and it is a symptom of fibro as well. I had the EMG and MRI trying to get to the bottom of things as well as I have a TON of muscle cramping, twitching, tingling, and muscle fatigue. General fatigue is common as well although I have to say since going gluten free with Celiac Disease, my fatigue is like night and day better. I read it's not uncommon for fibro patients to have some sort of gut disease or IBS, so makes sense I have Celiac as well. I get pins and needle pains, electric shock pains, shooting pains, tenderness all over the body like a bruise, lymph nodes swell and pinch, nodules that are excruciatingly painful in my abdomen/stomach area, low grade fever, my blood pressure has been up a bit slightly and pulse (although still in normal range, but I had a heart ablation back in 2005 and my BP is always 100/70 - lower with a pulse of 63. Now I'm 122/80 with a pulse of 84.) They told me it can be caused from pain. I get migraines. Vertigo sometimes. Lightheaded at times as well. Anxiety to the point of blurry eyes and the black out feeling. My fingers are now moving on their own. My thumb was pulling inward and yesterday my pointer finger joined in on the fun. Chest pain. I don't know - it's an endless array of symptoms. I am sure others will say so as well. It's different for everyone in some degree. I hope you find your answer soon. Hang in there.
 
I have had expensive and zero informative tests done by a neuro also. Your best bet is a rheumotologist, or if possible
go to a pain clinic. They can accurately access your problem and get you on some pain medication so you can manage
your symptoms. Since fibro isn't curable you really can only treat the symptoms. My search has gone on for several years,
finally i went to a pain management clinic and am getting my fibro to where i at least can have some relief.
Good luck
 
I'm so sorry that you're going through all this, Jen. I know exactly what you mean about the rationalizing everything as to being something else. I have a dear friend who does the same thing. Sometimes it *is* "something else" but sometimes it's not.

My bottom line after reading all this is that if you truly think it's something different from the fibro diagnosis they're putting on it, is it possible to get another opinion? Change doctors?
 
So sorry you are going thru this. Nohibg worse that feeling you are in the hands of the wrong doctor. In my opinion your neurologist is missing a lot things. If I were you I would really try to see a different doctor, one specializing in clinical diagnosis. This doctor doesn't even seem to be listening.

Best of luck and keep us posted!
 
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