Going on 2 years without a diagnosis

[bobbeb8]

How long should a diagnosis take?  I've been going to an MS Clinic for about 2 years now.  I feel like I've been to every doctor and have had every test in the book and still more to come.  I've been diagnosed with Fibromyalgia by 2 another drs.   I've been diagnosed with many other issues but nothing that my MS doctor believes covers all my symptoms.  I don't think my MS doctor believes in Fibromyalgia either.  He's also not convinced that it's MS.  I'm exhausted, emotionally and physically.  I work full time, have 2 children under the age of 10 and a husband.  I'm desperate to get my life back.  How much longer should I continue with this circus?    :-(  

3 MRIs (going for a T3 in the next few months)
Spinal Tap
3 months of PT
Sleep study at home (going for the overnight next week)
EMG
Electro Shock test
Colonoscopy
Multiple blood tests

I've seen Spine Specialist, Neurologist, MS Neurologist, Rhuematologist, Gastrologist, Uronerologist, Pain mgmt dr , ENT

I'm on 60mg of Cymbalta which helps curb some of the pain and brain fog.  Weather change seems to be making my symptoms worse.  Any advise...

[aspen2]

Just wanted to commiserate ... I'm going on three years in limbo now.  So many doctors, so many tests.  Everything ruled out.  

Be strong despite, and seeing a counselor was very helpful for me

[supermum_ms]

Hi and welcome,

Unfortunately, sometimes getting the correct diagnosis can take years, I can't comment in regards to MS or offer suggestions of alternatives, because you haven't provided any diagnostic information. It's possible you have more than one medical condition going on which would definitely complicate things but if you've been seeing an MS specialising neuro for 2 years, and he's still not convinced you have MS, it's quite possible that it is something else.

The alternative is that he's waiting for something MS specific to happen that cements MS in his mind, which may be perfectly logical if your neurological evidence is non specific or even absent but it may necessitate you getting a second MS opinion.  

I can only advise you to compile your medical reports together and look through all your test evidence and doctors reports to see exactly what abnormal diagnostic evidence you actually have eg the neurologically abnormal clinical signs found in your neurological assessments. T2 lesion size, shape, enhanced, non specific, the different locations on your brain and spinal MRI's, note any changes ie new lesion etc from one MRI to the next. Your LP results, abnormal visual test results, blood tests etc

Note every thing you've been officially diagnosed with that is suggestive / consistent with a neurological causation or not suggestive / inconsistent  eg visual symptom of blurred vision was diagnosed as Optic Neuritis (ON), Nystagmus, Diplopia etc = suggestive / consistent with MS vs diagnosed with normal 20/20 vision and dry eye = not suggestive

Keep in mind that many medical conditions cause similar symptoms, MS has many mimics because MS is a disease of the central nervous system, your diagnostic evidence would need to have some neurological abnormality for MS to be on your list of potential causes but the totality of your diagnostic evidence may be more suggestive of an alternative medical condition and will hold the clue.....

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

[Joiedecour]

sorry you're going through this. it's a long, never-ending process, or so it seems for some (myself included) but sometimes it is a very fast diagnosis. if your neuro is continuing to see you and follow what's going on then that's something. but you can expect him to treat symptoms. eg. meds for pain, meds for fatigue etc. keep us posted on the sleep study. good luck.