Hi, I have been 8 months undiagnosed with many symptoms. They have found multiple lessions on my brain, (none in spine). My bloods have show very slight infection for years. My spinal tap showed high white blood cell count. Vitamin D was low. I get alot of pain mainly behind my right eye that seems to go to my brain. Sometimes it comes in my left eye as well. My vision seems to have gotten worse over the last 12 months and I feel foggy alot. I get mild headaches almost 24/7, feels like there is a band around my head most of the time, which goes into my neck. My teeth feel numb and my jaw feels like its clenching alot. Weakness and fatigue which seems to come and go. I have aching joints and muscles, noting right hand and right foot often feel stiff. I have been tested for so many things i cant even remember. I have been on steroids for two months and then weaned off. I was sent for a second oppinion, but only to her collegue that she had been referring to all year anyway. my last neuro appointment she said I was stable with no new lessions, white blood cell had come down to a normal 6? Protien or red blood cell was very midly elevated but that could have been because of a bloody tap. I am showing no clinical signs of ms or anything else.(I have not lost mobility of a limb or eyesight) My lessions do not fit the ms Pattern. She will review me again in 12 months. I am to go and lose weight.
Ok so thats all good and well and I am trying to do that without worrying too much. I just have a few questions.

What is the MS Pattern? When I look at my mri and ms mri's online I dont see the difference.

What spinal tap result is an indication of MS? is high white blood cells a sign of that or would that be something completely different?

Can you be tested for Optic Neritis and not show anything but still have it?

If I have nothing wrong with me, eg: I have just bumped my head, or had depression, that is why I have lessions on my brain - would I have headaches and vision issues from this?

I have booked in to get a gastric sleeve done to try and reduce weight. In the meantime I guess I just have to wait another year and hope they are right.

Thanks for your help
Kelly

Hi Kelly!

I am so sorry you are going through all this confusion. I have been in your shoes for a long time. I only received my diagnosis of MS on April 26, 2016. I have been seeing the same Neuro since 2007, because of daily migraines.

I had early cataracts removed last fall. I was diagnosed with Fibromyalgia by my PCP and by 2 Rheumy's in the year and a half. My neuro never gave up, he always felt it was MS. When he did my annual brain, C-spine, & T-spine this Spring, he also ordered another Visual Evoked Potentials test. The radiologist says there are no lesions on my spine and that my brain lesions are stable. I see what could possibly be lesions on the spine, but what do I know?

My neuro looked back and compared my 2007 brain MRI to this year's MRI and there was a huge difference. There was also a difference on the VEP from 2 years ago to this year's test. My right eye failed miserably.

You may not have MS, many neurological diseases mimic each other, but don't give up. Keep seeking answers. See your PCP, see a rheumatologist, ask for labs for autoimmunes. Be proactive and informed. I wish you well on your journey to answers. Patience is often needed.

welcome kelly,

MS is a very individualized disease. there are many symptoms a person can have so there's no cookie cutter disease presentation.

the last i knew the dr looks for O bands. 2 or more are indicative of MS. a diagnosis is also a process of elimination of other illnesses. there's something called the McDonald Criteria that drs go by when diagnosing. try looking it up.

yes, if you have ON an opthamologist can diagnosis it.

you might want to keep a symptom journal with the sx's you have and dates. and, as you have tests start to keep copies of your records. start a file on yourself. and, get copies of your mri on CD's.

don't give up getting answers. you are your own best advocate.

Good advice above--it takes time and it is also a process of elimination. Have they checked for Lyme disease? it mimics MS.
Fibromyalgia can cause deep tissue pain and also can mimic MS. It's a tricky diagnosis, but the rheumatologist has markers on the body to tell if it is fibro.

As Judy said, keep a symptom journal. Get plenty of water and rest, and make sure to move daily, be it exercise or a nice walk. Try to live life to the fullest, whether or not you eventually get diagnosed with something.

Thanks Debbie, I will. Lyme Disease is not recognised in Australia.

Hi Kelly,

A Lumbar Puncture(LP) is used in the diagnostic process for many things

If you will read though the link provided in the quoted area you will see some of the conditions the LP may be used to diagnose.

A LP for MS is looking for CSF oligoclonal banding (o-banding). Information about o-banding:
https://www.nlm.nih.gov/medlineplus/...cle/003631.htm

Approximately 90%-95% of those with MS have o-bands when testing spinal fluid. However, there are those diagnosed with MS who either never had a LP or their LP was negative.

There is no single test, by it's self, that can give a definite diagnosis.

What testing, other than the MRI have you had done for your vision? Have you seen an Ophthalmologist? If an Ophthalmologist did not find Optic Neuritis(ON) on exam and the MRI did not show any sign of ON then it would be highly doubtful your eye problem is due to ON.

Lesions found on MRI can have many different causes. Your MRI report has an "impression" section that will give you more information about possible causes for MRI findings. The impression section is not a diagnosis.

Is it possible for headaches/migraines, and/or an injury to cause lesions? Yes.

Multiple Sclerosis is not a disease of the joints. Have you been to a Rheumatologist?

Thankyou ! That helps alot. I had an Evoked Potential test which I presume was ok. Other than that I have just been to an Optometrist. Would it have been an Ophthalmologist to have performed that? I have not been to a Rheumatologist, I will look into this. I live rural Australia, we have a shortage of specialist care out here, hense also why I am worried about my neurologist being up to scratch.
Thanks again to everyone for the information, it really helps.

Another quick question -

Does MS effect your menstral cycle? 2012/2013 my cycle would come and go 2014 I had no cycle all year, 2015 I had 4 cycles, and I have just had my first one for this year.

Hi Kelly,

No. MS does not affect menstrual cycles. Our cycles can cause a worsening of our symptoms but this is also seen in other health issues.

Some of the things that can throw off ones cycles are medications, stress, age and some health issues.

I would still suggest that you see an Ophthalmologist, they are the specialists.