Inflammatory Bowel Disease and MS Link?

New diagnosis and before diagnosis
#1

Hello good afternoon all,

I have been dipping in and out of this forum for some time now on a roller coaster of diagnosis and probable cause for my symptoms.

To cut a long story short to date i have positive findings in :-

MRI 2 deep white matter lesions, (Oct 2015)

LP Positive Oligloconal Bands and

LP - Raised white cell count

A report from Neuropsychology reports slowed and delayed responses

and i await the results of a second LP and evoked potentials

Along with the above i have had symptoms for the past few years which consisted of ‘spells’ of dizziness, numbness and tingling, unsteady balance, muscle tightness and pain some muscle spasms with general fatigue. During the summer last year i had an acute period of illness which i was symptomatic for several months with memory problems, lots of other cognition problems, word finding, slurred speech, along with very slowed mobility, dizziness and unsteady gait , these all took over 6 months to subside each week saw a very very gradually improvement. To date i am functioning at approximately and average of 60% and nearly normally, aside from all of the symptoms i had prior to august and with the addition of extreme fatigue and pain which are persistent. I am also still symptomatic when i am tired ‘mentally or physically’ with word finding concentration and unsteadiness.

There was suggestion that the acute illness could have been suggestive of a viral meningitis as the symptoms did coincide with extreme headache and very slight fever (that lasted just a few hours), however the combined results are now also suggestive but not conclusive for MS.

Further diagnostic testing (a repeat MRI, LP, Evoked Potentials and CT of the chest Abdomen and Pelvis) was conducted just a few weeks ago, the MRI remains unchanged from October and CT reports inflammation of many areas of the Bowel, colon, ilium which the radiologist advises is suggestive of Inflammatory Bowel Disease (IBD)(I have had symptoms of IBD for many years however was advised that it was Irritable Bowel Syndrome (IBS)). I have since done a little bit of research and found that there have been some links between patients with long standing (IBD) and white matter lesions that have in cases progressed to MS.

I would like to ask if anyone else has experience of the two conditions running parallel or indeed if anyone else has any further reading suggestions that looks at possible links between the two immune system diseases.

Thank you for your time

K

#2

Hi there,

This is my first time posting here, but thought i would have a look for if there was anyone in the same position as myself on here… I saw your post and thought maybe i could share what’s been going on with me!

I was diagnosed with Crohn’s Disease about 10 years ago, at the age of 16. Although it was bad at the time, and i struggled with it a little into my early 20’s, i have been well for a good few years with only a few mild relapses and no longer take any medication for it.

Last August, i started with neurological symptoms… Numbness in the left side of my neck, face, shoulder, arm and hand… Hot/cold confusion in my left side from my toes up to my waist and serious fatigue/loss of stamina/reduction in cognitive ability (memory, concentration etc. etc.). I was initially diagnosed as having clinically isolated syndrome, a one off episode of inflammation. I was described as having a ‘frisky’ immune system, as both Crohn’s and CSI are auto-immune responses in the body. My first MRI showed lesions in the brain and brain stem, but they were minimal and didn’t seem to be in areas that would create the symptoms i was experiencing. Obviously no way of knowing how long they had been there.

Anyway, following a lumbar puncture (which showed oligoclonal bands), blood tests to rule out every other possible infection, evoked potentials (absolutely fine), and a further MRI of my brain stem and spine this time (which showed new lesions since the previous MRI 2 months earlier), coinciding with L’hermites (a new symptom), they decided it was time to talk about MS. They are still not sure whether i have had 1 or 2 episodes, and therefore will not give an MS diagnosis. It’s just a wait and see if anything else happens situation…

I have my first consultation with an MS specialist in May, so it will be interesting to hear what they have to say. But at the moment, other than the weird sensory issues, and fatigue (which can also be from the crohn’s so difficult to establish what’s what), i am doing well and hopeful that even with an MS diagnosis, there are lots of new treatments on the market which can manage the disease, and perhaps it will remain on the mild side, as has my crohn’s for the last few years. I am still working full-time, but like you feel that i am not functioning at full capacity… Things take me longer to sort and i find i tire much quicker. I am getting on with everything i usually would, apart from going to the gym, that’s been put on hold, but am hoping to start back next week.

I hope that you are doing okay, and have found some helpful advice from other posters on here. Sorry i haven’t given you any, but sometimes good to know that there’s someone else with this unusual combination of issues!

Tash

#3

Hi Tash thank you for your reply and I’m sorry for not having replied sooner. I got out of the habit of logging on and then forgot password etc etc etc.

since my last post I had a further lumbar puncture, which once again confirmed unmatched ogliclonal bands in CSI and an evoked potential that came back clear. Further consultations with my neurologist have advised that I definitely have a neurological condition however many had been ruled out with extensive blood work which still left MS as a very real possibility. I was referred to an ms specialist who also confirms that ms is a possibility due to all the diagnostics, however with only 1 episode recorded we had to await a further episode. That episode I think I am experiencing right now and have been since 27 October following a short episode of stress and worry and bending really busy at work. I await to hear back from my neurologist after contacting him today.

Since posting I have also had bowel resection surgery in June this year which has put me into surgical remission from the crohns. After initial recovery from surgery I began to feel quite well from late August and had a really well September and early October now this next episode has left me in pain, muscle stiffness and weakness, and chronically fatigued with occasional laboured speech, word finding issues and unsteadiness, together with the usual numbness pins and needles dizziness that I experience most days.

How are you getting on at the moment ?

best regards Kate