MS without lesions???

Brain and nerves
1

I have just experienced a flare up of what has been thought to be CFS in the past but what appears to be presenting as MS.

Loss of power in left side, especially leg. Numbness in left side of face, cheek.

Urgency to go to the bath room, both ends.

Pins and needles around pelican area, hands and back of head.

Loss of sight in left eye, double vision.

Non stop ringing in ears.

Pain in spine.

Cognitive disruption.

I have just had a thorasic MRI and it showed no evidence of lesions, four years ago I had a brain scan and the same. I am on a list for another brain scan. Should I organise a lumbar scan? In the past I have had short episodes of similar symptoms, but never as severe as the episode I have just experienced. The health system in my country is not great , I have been in a out of A&E three time in the last month and not yet seen by a neurologist. I'm booked in for a scan in two weeks time. I'm so upset because I don't know what's going on. I am a professional working mother and very frightened for my future. Any advice welcome .

2

OMG Julia!!!!!!!! I am having the EXACT SAME ISSUES. I've had episodes of this for 12 years. Maybe every 2 or 3 years. Episode usually last like 2 or 3 months then things slowly resolve mostly. Sense July I've had severe issues and to this day it's horrible. I've been checked for MS and the MRI is all negative. Spinal tap showed elevated protein levels slightly and I'm anemic with iron deficiency. My iron is very low I'm 27 and I'm male, no bleeding anywhere. Kinda bizarre. But yeah same physical issues as you. I hope we can get some clues from each other

3

Hello, me too so thats three of us although if you're very anaemic you could be vitamin B12 deficient and that can cause neuro symptoms. My neurologist is baffled by my symptoms but says I have spinal stenosis. I feel for you both it's very frustrating. Good luck kindest regards

4

Hi Bic

I have stenosis of the cervical spine also, but the doctors has said that the numbness in the face symptoms are not connected to the stenosis.

Neither does the blurred vision. I am seeing a new neurologist in a couple of weeks, praying he will shed some light. Take care. I just wish we all had a better health care system.

J

5

Hi Julia

It does sound like relapsing - remitting MS.

If your MRI of the brain did not show lesions, you still could have MS.  

Most of MS patients do have lesions and an MRI of the brain is done with and without contrast (dye)

One other test that is 95 % positive comes from a lumbar puncture.  This test collects serum and spinal fluid

to look for Oligoclonal bands are immunoglobulins that collect in a patient's blood plasma or cerebrospinal fluid (CSF). The presence of OCBs in the CSF has often been used as a diagnostic criterion in MS.

As far as having a Lumbar Scan, they rarely use that as a test for MS.  Most lesions will be seen in the brain, 

or on the cerebral or thoracic spine.

My suggestion is that you find a Good Neurologist, to get examined.

One important question, have You been tested for Lyme Disease (comes from a tick bite)

There are other diseases that have symptoms that mimic MS.  

Being that I am an MS patient, you must learn to fight for yourself.  Keep pushing to get to see a Neurologist.

Try to find a way to try to calm down, as stress and anxiety will be magnified.  If it is discovered that you have

MS, You Can Still live a good life.  You will have to make some important choices such as medications and mostly How You Will Handle the changes that come.  As I said, most important is How You Handle it.

I personally can not take any medications to slow the progression as I have numerous other medical conditions.

However, I keep a positive outlook, I'm aware of what my body is telling me, such as when you must rest.

I will say that keeping a sense of Humor is a requirement that will help you.  Keep a written journal of your symptoms and dates when occurred.  Don't give up, get that appointment with the Neurologist.  Get an MRI of the Brain with contrast along with the Lumbar puncture.  I wish you all the best. Keep in touch ~  Faith

 

6

Hi Faith,

Thank you. I understand it might be a little frustrating reading posts from people not yet diagnosed, but you are so reassuring. Yes I sent a Lyme's test off today, bound for Germany as the Lyme's test carried out here in Ireland is often, according to my GP, unreliable. I was told today I have been referred to a new neurologist, who is v good, so if the brain scan doesn't show lesions I will ask for a lumbar puncture. I have always enjoyed a good sense of humour, and I am a positive person. I suppose it's the unknown, and the frustration with wanting to be in control of what it is I am dealing with. I am currently training for my black belt in karate, but have had to put that on hold. I fully intend on going for that belt whatever the outcome. I have to date been dealing with ongoing chronic fatigue. Everything I do is like climbing waterfalls, but I am strong in spirit. I know that my life will require change and I will have to adapt Do you try any alternative meds? Have you looked into LDN, it has very few if any side effects. I also find meditation, writing and painting helpfully. I am currently studying a MA in psychotherapy, with story. I wish you a peaceful and happy Christmas wherever you are and mind yourself. And thank you for understanding my impatience.

J

7

Hi Julia

Wow, God Bless You!  No matter what, You will be alright.  You have the right attitude, outlook, and Spirit to make it through this new journey ahead.  Glad to hear you've been referred to a new neurologist.  I congratulate you on working towards your MA in  psychotherapy as well as a Black Belt in Karate!  That is amazing and after reading your reply, I do believe that you will achieve that goal.  I wanted to thank you for sharing the info on LDN

It sounded very promising until I read about the possible side effects.  I am unable to take medications that would

potentially be harmful to the liver.  I have hepatosplenomegaly,  and NAFLD, stage 3 fibrosis, as well as bilateral  nephrolithiasis.  There are other conditions but this is enough for now!  

Believe me, I have sure researched many medications for treatment in MS.  As for right now, there are just too many risks that I'm not willing to take.  At least for now, I know where I stand, and take things day by day.

I believe in the use of Herbs, but I research them as well.  I have type II diabetes and the Herb Berberine works very well in lowering my glucose without the use of insulin.  I believe that knowledge is power and knowing what you are dealing with is half the battle!  So I wish you also a peaceful time and Merry Christmas.  Best wishes on

all your test results.  Please keep in touch  You will be in my thoughts and prayers  ~  Faith

8

Ah, faith you are a soldier, I will keep in touch. It is heart warming you remain so good willed , and kind in your own suffering. Please keep that faith.

J

9

Julia24924,

Would you have any further information? I have had these same symptoms and my brain MRI in 2013 and again last month show no lesions or changes in white matter. I too am terrified for my future since doctors keep telling me there is no diagnosis.

10

For the past 2 months, I've been confined to a chair unable to stand more than 10 mins without having tremors.  I've been coaching a softball travel team for the past 4 years and I've had to quit. I had MRIs of brain, cervical, thoracic and lumbar and no lesions.  I have shocks that run to my head, bladder incontinence, severe constipation, slurred speech, bells palsy, hyperrflexia, tingling and numbness in arms, pins and needless, restless leg syndrome, memory issues blurred vision.  I do have nerve impingement on lower back but Neurosurgeon says it isn't causing the Nuerological issues.  I also have stenosis of neck and back.  The shocks to my head started 4 years ago along with slurred speech and having issues like IBS.  The Nuerologist immediately stated I need to see a Psych and sleep doctor which I'm doing this week, but he makes me feel like I'm making this up is making me severely depressed.  I have to have back surgery soon and I'm hoping the Nuerosurgeon is wrong and it's the cause of all my issues. He conducted and EMG but says there is no way I have MS without lesions.  He is so adamant of it.

11

I have a lot of the same but I do not have an lesions I have 3 small spots on the brain and 1 in my spinal cord.

Loss of power in left side, especially leg.

Numbness in left side of face, cheek.

Urgency to go to the bath room, both ends.- .........I go every hour

Loss of sight in left eye, double vision.-...I have this.. take ur B vitamins 12 & b3 biotin. when I started biotin my eyes were back clear in 3 days...no glasses.

also I added Niacin B7, and it also improved my vision as well as restored my short term memory. Niacin is also helpful for ADHD, it allows you to consentrate. I was able to go out on disability I was so off, no neurons firing. But now I am back to work and I work in a fast past and I can keep up again. vitamins to remember B3 B7 B12....write me back when this works for you....I really though I was going crazy...

Non stop ringing in ears.

Pain in spine.

Cognitive disruption.