MS?

[4655]

I have been having symmetrical numbness in my legs since April: front and inner thighs, inner knees, calves and bottom of feet. Progressed gradually from feet to thighs. No improvement over past 4 months. Some muscle wasting and weakness. Affects my balance and walking. Neurologist says MS because there are brain and spine lesions. But no optic neuritis or L’Hermitte’s. Other body parts not affected. Any ideas? Peripheral neuropathy?

[supermum_ms]

Hi and welcome fellow ozzie,

I'm sorry to say this but if you have multiple spinal cord lesions there are not many other medical conditions that can cause both brain and spinal cord lesions, MS is the most common cause of demyelinting brain and or cord lesions so it's honestly unlikely to be one of the MS mimic's specifically because you have spinal cord lesions.

What i will say though is MS spinal cord lesions are not normally big enough to transverse the cord like Traverse Myelitis cord lesions, MS spinal cord lesion typically causes symptoms on one side of the body (unilateral) but an asymmetrical bilateral symptom pattern presenting or developing over time will also happen.....but presenting with a symmetrical or mirror image symptom pattern would usually point away from neurological conditions like MS.

The only exception i'm aware of is when TM was the presenting demyelination attack of MS, MS research has discovered TM can develop into MS, though most people dx with TM don't usually go on to develop MS...

"Transverse myelitis can appear as the first symptom in conditions such as multiple sclerosis (MS) or neuromyelitis optica (NMO). A person with transverse myelitis who also has an abnormal brain MRI with more than two lesions has an increased chance (as high as 90 percent) of going on to develop MS."  
https://www.nationalmssociety.org/What-is-MS/Related-Conditions/Transverse-Myelitis

You don't mention any specific's about the brain lesions eg size, shape, if you have dawsons fingers, locations, if any lit up with contrast etc etc but the possibility of a neurological condition like MS not being the most likely cause would be the untypical symmetrical or mirror like symptom pattern your saying your experiencing.....this medhelp explanation of how MS works might make MS symptom pattern a little easier to understand;

https://www.medhelp.org/posts/Multiple-Sclerosis/What-Kinds-of-Symptoms-Dont-Sound-Like-MS/show/856407

It's genuinely not uncommon to need a second or even a third opinion before accepting being diagnosed with MS so i would suggest you consider seeing an MS specialising neurologist at one of the MS clinics in your state if your struggling to accept MS is the right dx for you. If you don't know where they are your local MS society chapter will be able to advice you on where your MS clinics are located, they will also be able to provide you with access to your local support group and services too.  

I hope that helps......JJ

[4655]

The numbness is fairly symmetrical: bottom of feet, calves, front and inner thighs and front and inner knees. Progressed within 4-5 months as follows, left foot, right foot, left calf and knee, right calf and knee, left thigh, right thigh. And stayed like that. Not better, not worse.

[4655]

It varies throughout the day. Less when I wake up and in the evening. The inner knees are the numbesr. Back and outer thighs are ok. Progressive symmetrical MS. Waiting for the LP results. In hindsight, I had something like ADEM (acute disseminated encephalomyelitis) 5 years ago which is when I started to develop the lesions (as per old MRIs). I know 20% of ADEM can progress into MS. It’s just the symmetrical pattern is odd.

[supermum_ms]

I'm not sure i understand what you mean by "Progressive symmetrical MS", 'progressive symmetrical' is not a recognised sub-type of MS....technically what you've described pattern wise would be more a relapsing remitting symptom pattern than 'progressive' if your saying you experienced another distinct episode which you partially-completely recovered from 5 years ago, this situation would at least be your second medically  recorded attack but it's quite possible you've experienced other milder relapses in 5 years that didn't obviously cause neurological symptoms and or developed lesions that didn't cause any symptoms at all.

btw If you had MS suggestive-consistent brain lesions as well as spinal cord lesions 5 years ago and now your latest MRI's have found even more brain and spinal cords lesion than you had before, my first thought is why on earth didn't your neuro diagnose (dx) you with MS 5 years ago?!  

I don't think from what you've mentioned you would easily fit Primary-progressive (PPMS) or even the even rarer Progressive-relapsing (PRMS)...

"Unlike relapsing forms of MS, primary-progressive MS (PPMS) is characterized by a fairly steady, gradual change in functional ability over time — most often related to walking — without any relapses. Due to this basic difference in the disease course, different criteria are used to make an accurate diagnosis of PPMS. The criteria for a diagnosis of PPMS are:

One year of disease progression (worsening of neurological function without remission), AND

Two of the following:

A type of lesion in the brain that is recognized by experts in as being typical of MS

Two or more lesions of a similar type in the spinal cord

Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system

Meeting these criteria can sometimes take a fairly long time, particularly if the person has only recently begun to experience neurologic symptoms. Several studies have suggested that the PPMS may take two to three years longer to diagnose than relapsing-remitting MS."
https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS/Diagnosing-Primary-Progressive-MS

You said..."left foot, right foot, left calf and knee, right calf and knee, left thigh, right thigh. And stayed like that. Not better, not worse"...to be honest i'm actually wondering if your symptom pattern would be classed as being a clear 'symmetrical' presentation because it initially started on only one side of the body before it presented in the same location on the opposite side, one side then the other could still be suggestive of multiple cord lesions on different sides of the cord, though it would be odd to be completely matching ascending pattern hmmmm do you remember how long the time frame (minutes, hours, days, weeks, months) it was between the left side numbness and it happening in the same location on the right?  

Information:
https://www.dartmouth.edu/~dons/part_2/chapter_13.html  

http://www.radiologyassistant.nl/en/p4f789faf60fa4/spine-myelopathy.html

https://my-ms.org/anatomy_spine_damage.htm

Hope that helps and doesn't confuse....JJ

[4655]

The right side was lagging behind by a month. All happened within about 6 months. What does this means? 6 relapses in 6 months? Seems odd.
In 2013, I am virtually certain I had ADEM (acute disseminated encephalomyelitis). Now the MS presentation is very different and presents as numbness and muscle weakness. Most lesions must be from 2013. They do did a spinal tap recently. There were OCB but the IgG was normal.
From what I read, my symptoms are very much  neuropathy symptoms. The probability of having symmetrical lesions on either side of the spinal cord within a short period of time is slim.

[4655]

Relapse often means a remission when one can expect partial or complete resolution. There was no improvement in symptoms.

[supermum_ms]

"The right side was lagging behind by a month. All happened within about 6 months. What does this means? 6 relapses in 6 months? Seems odd..........There was no improvement in symptoms."

6 relapses in 6 months would be extremely odd, generally the relapse rule of thumb for a 'new' relapse is when previously remitted symptoms return 'and or' existing symptoms worsen 'and or' new symptoms are experienced lasting at least 24-48 hours with at least a 30-45 day break since the last relapse otherwise it's actually the same relapse.....so with that thought in mind what you experienced was 'possibly' just one severe  relapse that continued for a few months.  

Keep in mind lesion mapping is very difficult to be completely accurate, numbness, paresthesias, and/or weakness from one level on down is indicative of a cord lesion, spinal cord lesion symptom location and patterns makes it a little bid easier to work out the likely location to be in the cervical, theocratic or lumber regions.

Spinal cord lesions can develop anywhere in the cord, cervical cord lesions are easier to see on an MRI because of the way the cord narrows as it descends, greater fluid content, varying lesion size etc etc and from my understanding the lower the lesions are located in the spinal cord the more significant the clinical signs and symptom pattern can be in working out it's most likely location.

Theoretically (if i am understanding what your saying), one spinal cord lesion that initially just effected your left side could of continued to increased in size until around a month later it has grown big enough to traverse the cord and effected the right side as well, if it continued to get bigger it could also cover more than one segment eg L4 and L5 could to be suggestive of the symptom pattern you experienced.  

see below to get an idea of the nerve map of a lesion location that could cover foot to thigh
https://www.google.com.au/search?q=thoracic+lumbar+cord+lesions&tbm=isch&tbs=rimg:CY8-VVp6dQF_1IjiP9ybC9sZMt89xKF9Ep8UVStlhgbOHqEOeB9DyWA4OsZdhOdc8r4NhixZbHCxS2pWkOTVmtg3d0SoSCY_13JsL2xky3Ed9ua1aIe5C7KhIJz3EoX0SnxRUROsPeP3ZG_1mEqEglK2WGBs4eoQxEBxuqK9ZKZJSoSCZ4H0PJYDg6xETa4SKqeRH3KKhIJl2E51zyvg2ERjZly07Vck_1AqEgmLFlscLFLalRFxozVI_1m0OrCoSCaQ5NWa2Dd3REUH96nMJ0Ioo&tbo=u&sa=X&ved=2ahUKEwjq4ITZz8ncAhVIebwKHcIJD3QQ9C96BAgBEBs&biw=768&bih=379&dpr=2.5#imgdii=S6QuG4ajN-HV_M:&imgrc=ysHfwXPZK9FMCM:

Oligoclonal Bands that are suggestive-consistent with MS  present only in the spinal fluid, 'basically' Obands that are in both the spinal fluid and the blood cancel each other out and it's the additional 2+ Obands that are 'unique to the spinal fluid' that are diagnostically significant.  

lol i think my brain has run away in protest, it's complicated and isn't necessarily clear cut to work out but hopefully you get some idea of what i'm trying to explain

Cheers.......JJ