How were you diagnosed?

[MrsBritty]

Hi all. I hope that it is not insensitive for me to post here as I do not have an MS diagnosis. I have however experienced really odd symptoms for about a year now and have undergone extensive testing to no avail. I have been forbidden to use google and thought it might be informative to go directly to people that have experienced the diagnostic process.

I'm 27 now about a year ago I woke up one morning with pain coming from my spine and all through my limbs. My hands and feet felt as if I were being stabbed particularly in my pinky fingers. I also had tightness in my chest. The only way I could describe the pain was "bone pain." I've also had migraines and heart burn for years.

I went just to Primary care normal blood work was told to go to rheumatologist.

I went to rheumatologist I described my sypmotoms & was tested for things that met my symptoms. I was told I could have lupus to come in for a lupus panel, I did, and it all came back negative.

In the mean time I began experiencing widespread muscle twitching, spasms, cramping. I have sensations where my hands feel fumble-y. I have had cognitive difficulties. I had tingling almost like a feeling of static electricity coming from my spine that I get on occasion. Sometimes parts of my body for example a leg will go numb. I have poor eyesight anyways but started experiencing strange things in my left eye it is like my eye is shorting out and I am looking at neon in my peripheral. One of the most troubling things I have experienced is extreme pain in my tongue. All of these things come and go.

In addition to my physical symptoms I started getting sick frequently which is quite unusual for me. I never missed a day of school or work my entire life. In the last year I had shingles, the flu twice, stomach bug twice etc.

I have had a normal brain MRI, EEG, neck and spine MRI. My neurologist says that my symptoms are from anxiety. My immediate reaction was he is full of bologna. The visions disturbances (without pain) are due to ocular migraines, the muscle issues benign fasiculation syndrome. Etc. migraines, stress, migraines, stress

After a while I went with the anxiety diagnosis but to the point that I was having issues and brushing them off. Last week I felt nausea and dizziness which worsened to the point that I could not lift my head and was vomiting. After about 4 days and being unable to move my husband says "uhh I think that you have vertigo." My vertigo has eased off, but the headache that followed was so intense. I also experienced chills while trying to sleep when very sick with vertigo one night.

Yesterday I had the tongue pain return, my food tasted really odd, and I was unable to keep my food down.

I'm questioning my neurologist diagnosis constantly. I'm not sure if I should pursue more testing. I'm considering asking for a lumbar puncture. Could this all be due to migraines and anxiety? How hard is It to actually diagnose MS?

I have read through some of your post and read that MS presents in early stages as asymmetrical. Does this sound anything like how MS presents in early stages? Would I have all of these symptoms so close together? Could it have been missed on MRI's?

Thank you all for reading through this and I hope for helpful advice

[aspen2]

Agree with JJ in that nothing you are experiencing suggests ms as a cause.

Have you had blood work done?  The cramping, twitching etc. could definitely result from deficiencies of magnesium, and where that is low, low Vitamin D is often found as well.

If I were you, the first thing I'd do was make sure all my vitamins and minerals were optimized, and then see what (if any) symptoms remain.

Another question -- have you been taking medications for any chronic symptoms?  I've had a few things you are experiencing as adverse effects to medications (the eye thing, for example; had three episodes of that and palinopsia which turned out to be caused by amitriptyline.  It could still be ocular migraine, but something to consider.)

Sorry you're struggling.  You have a lot going on and I know how hard it is.

[supermum_ms]

Hi and welcome,

To be honest there wasn't really anything you'd mentioned that made me think it sounded MSish.....from what i understand you've basically been experiencing the MS red flags which are things like; all peripheral limbs, symmetrical, wide spread, lots of different symptom types, multiplying symptom, rapid or inconsistent progression pattern, normal neurological test evidence ie clinical exams, MRI's etc and typically all point away from neurological conditions like MS.

Both Migraine and health related Anxiety can cause people to experience episodic symptoms that mimic many different medical conditions and doesn't cause condition consistent test evidence or clinical damage......keep in mind though, over this same time frame you are saying you have been diagnosed with multiple 'viral' conditions which would have overloaded your immune system - Shingles (herpes zoster virus), 2 pouts of the flu and 2 stomach bugs, and IF the dizzy/vomiting episode wasn't migraine that too could be viral related.

All in all what's been happening to you is less likely to have anything to do with a neurological condition like MS and more likely to do with what you already know to be true, as in the combination of all those 'viral' conditions, your Migraines and anxiety. It's not actually uncommon for people to experience a medical scare and it trigger's health related anxiety, googling medical symptoms whilst experiencing anxiety can definitely feed anxiety and make the situation worse if you end up hyper focusing on to a specific medical condition, and the more your researching the condition the more symptoms you experience...  

Hope that helps.......JJ