MS Diagnosis advice - what tests & should I pursue?

[RainyGirlRR]

Hi, I'm new to this forum. I'll start with my question first & then go into my background & symptoms as my background is very long; thanks if you read all the way through :-)  I'm waiting on my 2nd MRI (no contrast, on brain) & blood results (for Lymes dis.). I'm wondering if my results come back normal if I should still try & pursue MS Diagnosis and additional testing & if so what I should request (ex. LP)?

Background: I'm a female currently 36; 3+ years ago (just turned 33 with good health) had upper back & neck pain. Came out of the blue, no accidents. Went to GP doc. Diagnosed pinch nerve and sent to PT along w/ given steroids & other meds for pain & muscle spasms. Started getting intense burning pain in arm, hand & fingers. Muscle Spasms in neck, shoulder & back and pressure at base of head, back/arm weakness all this on left side. Had some odd visual episodes,1 of them occurred while PT working on me; bright lights, face drained of color. They freaked out & wouldn't work on me till GP got it straightened out. Had MRI on spine (normal) and brain (normal). Finished w/ PT still wasnt fully recovered but things did get better over a year w/periodic brief flare-ups. Then very big relapse. GP sent me to pain management dr/specialist who I still see monthly (have chronic daily pain). Went through all kinds of tests (cervical spine again - normal & EMG -normal) & treatments (injections, more PT, different meds, etc.) Diagnosis changed to cervical Dystonia. Have also been to all kinds of doctors/specialists most confused by my symptoms but all can tell I'm in pain. Even though diagnosis is CD doctor not sure, cause have symptoms outside of dystonia or even pinched nerve (which no test gives proof of); he had me go through my 2nd brain MRI last week,  cause of increasing symptoms. I suspect he thinks I may have MS, which I do too, but he hasn't really said. I requested a Lyme Dis. test, cause I know some one w/ it & she recommended i have done. He thought it a good idea, "so to rule it out" he said. I'm seeing a Neuro specializing in headaches Monday & hoping she can tell me results of MRI.

So my symptoms (some are more frequent then others):
-frequent, random, weekly migraines
-frequent vertigo (triggered even toward end of mri last week)
-lots of muscle twitching, cramping and spasms in feet, calf muscle, arm, stomach, neck, back, shoulder & eye on one side
-difficulty walking sometimes, feel like alignment is off, left leg cramps up, stiff calf muscle & doesn't flow or move with rest of body
-light bug feeling of crawling up & down back of neck
-exhaustion beyond norm; could easily sleep my life away
-felt like spilled water down or urinated down inner thigh or calf of leg, but haven't (nothing there)
-irritated eye, pressure behind eye, sometimes will tear up or cry from one eye
-burning left side in arm, hand, fingers, leg & toes
-tingling, pins & needles &/or numbness in toes, fingers/hand, left side of face & lips
-sharp pain and at times like an electric feeling
  After taking meds pain will intensify & it feels like a spark is lit & running through my body; difficult to stand & painful but eventually calms all down & helps
-on left side: upper back, arm, hand weakness & weakness in both legs (to point of shaking) occasionally
-slight tremors
-Spacisity/tightness in neck, arm, fingers & leg
-sometimes feel like choking from the inside but only on the left side of throat
-lately voice has been getting hoarse and even started losing it one week, but not sick at the time
-sensitive to extreme temps - will sweat on just one side & if very cold extreme pricking pain in palms of hand
-feel spacy, forgetful, often can't think of right words

Okay, this is most or all of symptoms (I think). Sorry so long, but I've had a lot of symptoms over a period of time. I read in a old post that sometimes you can have nervous system/brain scaring that doesn't always show up on mri,cause it's too small. Kind of wondering if that may be my situation, but if so is it expected that eventually (x+ years) show on an mri or what kind of tests might have better results of showing damage?
THANKS!!!

[supermum_ms]

Q: When you say 'clinically abnormal neurological signs' does that come from something written that the doctor provides you or verbally?

A: Sometimes the abnormalities will be mentioned to you during your appointment but not always, there will definitely be medical reports written by the movement disorder specialist and the neurologist with his/her observations of your neurological assessment and any abnormalities will be noted in these reports eg "-Spacisity/tightness in neck, arm, fingers & leg" .

Spastic muscles typically demonstrate a loss of movement, there are 2 or 3 different but similar general tests neuro's can use to measure muscle activity in your neurological assessment, to give you a basic idea this one is the MAS scale....

0 - No increase in tone
1 - Slight increase in muscle tone, manifested by a catch and release or     minimal resistance at the end of the ROM when the affected part(s) is moved in flexion or extension
1+ - Slight increase in muscle tone, manifested by a catch, followed by minimal resistance throughout the remainder (less than half) of the ROM
2 - More marked increase in muscle tone through most of the ROM, but affected part(s) easily moved
3 - Considerable increase in muscle tone, passive movement difficult
4 - Affected part(s) rigid in flexion or extension

I'm not sure which country your from but you should be able to get copies of all the different tests results and specialist medical reports eg neurologist, movement specialist, physiotherapst, pain clinic, ophthalmologist etc.....they will each have made individual reports, but usually the doc that sent you to them and or is prescribing medications should have copies of all your records.

Cheers..........JJ

[RainyGirlRR]

Thank you for your response. I really appreciate it and I'm definitely keeping an open mind; just hope to have some better understanding of what is causing all my symptoms. I've been to a neuro that specializes in movement disorders. He said my "presentation is consistent with chronic...pain & that my underlying diagnosis was not clear." Also said I had "subtle" features "possibly consistent with cervical dystonia."  He seemed confused on what was causing all my symptoms same as my pain management doctor along with the other specialists I've seen. I've thought that maybe I have more then one thing that is causing my symptoms, cause Dystonia doesn't cover some what I've experienced.  
When you say 'clinically abnormal neurological signs' does that come from something written that the doctor provides you or verbally?

[supermum_ms]

Hi and welcome to our little MS community,

MS would have to be a potential explanation because MS and dystonia are associated, it's generally always better to see a neurologist who actually specialises in MS, so if the neuro your seeing specialises in migraines, it would probably be a good idea to request a referral to an MS neuro and or a movement disorder specialising neuro.

It would be highly unusual to have the amount of neurological brain and or spinal damage caused by MS that you're talking about and for there not to be any MRI evidence of lesions. MS means many scars and when there isn't any lesions showing up, it's generally a red flag and one of the MS mimics is more likely and need to be ruled off their potential causation list.

You've mentioned symptoms worsening with medication, so there is a potential that some of what your dealing with 'could be' related to side effects of the medication(s) your on, which would be worth looking up and asking your prescribing doctor about...

You don't mention your 'clinically abnormal neurological signs', which are still diagnostically significant hard evidence suggestive/consistent with different  neurological conditions. Regardless of what MRI evidence you have, your clinical signs of neurological abnormality is important diagnostically, do you know what your neurological exams found to be abnormal?

Keep in mind that symptoms are not the same as the clinical signs of neurological damage, symptoms are often subjective and can be caused by many different non neurological conditions but your abnormal neurological clinical signs are objective medical evidence that narrows your possible causation list to neurological conditions.

"Idiopathic hemidystonia may spread more slowly. Symptoms may spread through the affected side during the first few months to years, followed by an eventual plateau and stabilisation. However, with no identifiable lesion in the brain, there is no understanding/reason as to why the dystonia only affects one half on the body."
http://www.dystonia.org.uk/index.php/component/content/article/2-symptoms/239-hemidystonia  

MS has many mimics and because you have an awful lot going on for early MS (first presenting 3 years ago and had 1 relapse since), so i'm not sure that MS would be your most likely explanation so i'd definitely recommend keeping an open mind on causation....

Cheers.........JJ