MS Diagnosis / Opinions

[Schroedingerscat]

Hi, first time posting

I hadn't been diagnosed with MS (haven't met the McDonalds criteria) but I also haven't been "diagnosed" with anything else.

Sorry about all the info, don't know what to / not include.

I went to the neurologist because of numerous (sudden onset) migraines (with aura) followed days later by numbness on my face and arm (which only lasted maybe as much as 30 minutes).

EXAMINATION: Disc hyperaemia and swelling of disc margins left  > right. Impression of preserved venous pulsation right. No RAPD. No evidence of nystagmus or ophthalmoplegia. Motor examination including testing of tone, power and reflexes normal. No pathological reflexes. Normal sensory examination. No evidence of cerebellar dysfunction. Normal coordination and gait. Normal vital parameters, normal HGT and urinary dipstix.

Visually evoked potentials showed no supportive evidence for diagnosis of optic neuritis

MRI found: 10 mm T2/FLAIR hyperintense nodule seen in the peripheral medial left cerebellar cortex. No restricted diffusion. Intense homogeneous enhancement after contrast administration. No evidence of meningitis, no evidence of abnormal cortical enhancement or hydrocephalus.

CSF clear. 12 red blood cells. 14 lymphocytes (elevated). Protein 0.27 (normal). Glucose 3.91. CSF albumin 111 (not elevated). CSF IGG 42.7 (elevated). IGG index 1.57 (indicative of locally produced IGG). Oligoclonal bands present.

LABORATORY INVESTIGATIONS: RPR, TPHA, ANF, ANCA negative. TSH 1.82, T4 11.4.

Conflicting evidence whether intracranial pressure was elevated. Pressure measurement was 28 cm H2O (elevated), there was however venous pulsation visible in the right eye, double pathology in absence of other clinical evidence of meningitis appearing unusual.

OPHTHALMOLOGICAL EXAMINATION: Normal left visual field. Increased right nasal scotoma.

Received a three-day course of intravenous Solu-Medrol.

Received a diagnosis of:
DIAGNOSIS: ​Optic neuritis left
​Raised intracranial pressure
​Enhancing nodule in the left cerebellar cortex
​DD: Enhancing demyelinating plaque
​DD: Small vascular malformation

After the treatment, I felt better than I had in years. Things that I didn't go to the neuro for had disappeared (like balance problems, inability to sweat, palinopsia etc.) The thing that I didn't go to the neuro for was my eyes and yet I had relief to a certain extent, but not ever complete recovery.

In the last years or so I have started having recurrence of things like walking into walls etc and I have now been having double vision in addition.

Was sent to neuro the other day and these were the findings.

Examination: Disc margins left not as well demarcated as right, however no optic atrophy. Pulsation of the central retinal veins seen in the right eye. Reflexes lively, impression of slightly increased reflexes in the right arm. No pathological reflexes or pathological increase of tone. They evidence of cerebellar dysfunction. Normal walking and turning.

Special investigations: Cranial MRI: The previously enhancing left cerebellar nodule no longer demonstrates contrast enhancement. It is T2 hyperintense and suppresses on FLAIR. No restricted diffusion. It has near CSF signal characteristics.

There is a new focal area of T2 and FLAIR hyperintensity within the periventricular white matter of the posterior right temporal lobe. This does not demonstrate any enhancement.

Intracranial flow voids all appear normal. No abnormal hemosiderin deposition.

Midline anatomic structures appear normal on the T1 sagittal sequence. Dural venous sinuses opacify normally.
There is incidental mucosal thickening within the right maxillary sinus. No additional abnormal findings.

Midline anatomic structures appear normal on the T1 sagittal sequence. Dural venous sinuses opacify normally.
There is incidental mucosal thickening within the right maxillary sinus. No additional abnormal findings.

COMMENT: The left lesion within the left cerebellar hemisphere no longer enhances and has near CSF signal characteristics. Appearances suggest inactivity. New non-enhancing T2 and FLAIR hyperintense lesion within the white matter of the posterior right temporal lobe, non-specific. The topography would be atypical for demyelination of the multiple sclerosis type. MRI could be performed for a follow-up if required.   No other lesions identified.

So here I sit, totally clueless, neuro simply said, everything looks fine (I had to get copy of the letter to find there had been changes). My GP is referring me to another neuro.

Any insights would be greatly appreciated.

Regards,
Sally

[Schroedingerscat]

Well I hope the next neuro can give me some insight into the situation. I'm personally not entirely convinced it is MS, but just have nothing to really attribute things to, from what it looks like from what I've read so far, he seems to have ruled out other things.

I'm actually going to start another thread just to understand the "attacks" aspect. Just needing some clarity on some things.

Thank you once again for your responses.

[HVAC]

Here is how neurologists think. It is not MS until all other things are ruled out and they decide it is MS. I do not know if you have MS I am not a doctor. Not always but many times Optic Neuritis eventually leads into MS. Also it sounded like you had a lesions which enhanced one time and then later did not. That is typical in MS. Many doctors say migraines are not MS. Many people with MS have migraines. That said there are other illnesses which have shared symptoms with MS.

For many people a diagnosis of MS takes years. Many neurologists like to follow you over time. All my tests from the start screamed MS. Because I had symptoms from childhood and did not know they were symptoms it took me two years to be diagnosed. I had several neurologists say I would be diagnosed with MS but none would diagnose me. The last dr. a MS Specialist looked at tests and said it is not MS. Next visit he looked at same tests and said oh yeah this is MS. I was hospitalized as a toddler for neurological. They looked at my files and decided I had MS since I was a toddler.

Actually other disease can take years to diagnose. First you have to get to the right specialist. It took me four or more years to be diagnosed with cancer. I saw all kinds of doctors. I even had my gall bladder removed. Finally a GP found it. In hindsight I had all the classic symptoms. The human body is complicated. Doctors do not know as much as we think they do. Neurologist usually follow you every six months. They like to see changes for themselves. They are like judges they want evidence and to see it for themselves.

Also tests do not show what we think they show. MRIs for example do not show the brain as much shadows brain. Most MS is gray matter damage and MRIs only show white matter. A lesion could be many things.

I have CT scans every two months they see cancer and twices said lesions were something I was born with until they grew then they say it is cancer. Another time they saw a lymph node and decided it was breast cancer which it was not.  It is all about interpretation.

Alex

[Schroedingerscat]

Hi Alex

Thank you for your reply. I actually don't think he was a headache specialist, from the very first appointment he "mentioned" MS, (but dismissed it and I never thought about it much after that), which took me totally by surprise, I initially had been concerned that I had a stroke because of the face / hand numbess.

After being told optic neuritis and treated with solu-medrol, I had a follow up 2 weeks later, then 2 months and was a quick in / out appointment, been told everything's fine come back in a year. I didn't follow up because I was frustrated at being told everything is fine.

I left the office with absolutely no idea what was going on and still to this day have never had anything clarified, so I have been in limbo. The first time I had any indication of lesions found, was when I requested my medical file recently.

[HVAC]

I think another neurologist is a good move. I would find one who specializes in MS. Not all of them do. I suspect the neurologist you went to was a headache specialist? I do not know if you have MS but some of the things you describe could be MS.

Alex