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Undiagnosed questioning IBD,Humira & MS connection

Hi everyone

I am a lurker that’s been keeping this website on my browser and flicking through it when brave enough. Tonight after reading multiple comments on newly/undiagnosed I thought I shall start a thread not only about my symptoms and if they’re the norm but I’m trying to see if there’s a connection of these autoimmune diseases and some biologic treatments that are being used.

So to begin,(and I apologise on my typing, it is currently quite hard for me to type). I just wanted to start with my history and symptoms

2 ago, speech difficulty, numbness, fatigue, pain mainly in my shoulder, peeing a lot and headaches Had full MRI said no signs of anything must be fibromyalgia. Then my Crohn’s disease flared up (have had Crohn’s 30 years) and I was put on steroids and started to feel better all round.

Crohn’s is still active , since flare began have been on prednisone, azathiaprine, Humira, Infliximab, budesonide & pentasa. Nothing works other than steroids which you can’t take long term (they caused me to have Cushing’s syndrome 18 months so Drs are wary).

Moving on to last year, Drs discover that the Humira has caused cancer cells of my cervix so come August I loose my entire reproductive system to clear that up.

Meantine I start having these odd symptoms again, initially nothing major, I just had these very mild contraction pains at night and I started weeing the bed slightly. Didn’t think much of it at first then things have gotten really bad.

Currently my symptoms are as follows

Massive constriction around my chest.waist/thighs

Internal tremors that feel like my insides are contracting, which leads to urination

pins and needles mainly in arm and hand but also in leg/feet (right side)

Severe pain in right arm

severe pain in my trunk especially after these “contractions”.

Blurry vision, can no longer see things close up at times.(seeing optician Wednesday).

Balance difficulty now using a walking stick

Pain in my back of pelvis

tremors

Fatigue

Headache

Dizzy spells

so thats my current symptons (aside from the Crohn’s symptoms). I’m due to see a neurologist in May but my GO has now rerequested an urgent appointment. I’m pretty sure it sounds like ms but I’m not a dr so could be wrong.

My next question is the link between IBD & MS. Is there anybody on here that suffers with them both? Or multiple autoimmune diseases,(lupus, RA etc)? It does appear that there seems to be a higher risk of having ms if you have IBD?

And finally (and this is based purely on my research online), there does appear to be a link with the biological drugs given for certain diseases, in particular Humira causing MS. Now I’ve only read a few articles on this so not sure how much validation it has but I do know that these drugs can cause cancer along with many other conditions so again, is there anyone here that’s been treated with a biological drug and then later developed MS? It’s interesting as I’ve been treated with Humira which as I explained above caused me no end of issues so would be really keen to connect with anyone else who’s been treated with biologs.

I know that that was a really long post and I literally can’t feel my fingers now and my hand is killing me so any input would be grateful. Thanks.

Hello

You are right in saying that someone who has one autoimmune disease may be marginally more likely to develop another. And there are connections between various autoimmune diseases. When someone has three or more AI diseases, it could be called Multiple Autoimmune Syndrome.

But as for a drug specifically causing MS, it’s possibly one of a number of factors, but unlikely to be a solitary cause on its own.

It’s generally thought that for all the autoimmune disorders, there are a number of factors, which in combination can result in a specific AI disease. For example, gender, geographic locale, encountering various viruses, genetics, and X number of others.

So for example, MS is more likely in women than men. It often (but not exclusively) begins somewhere around the ages of 30 to 40. It may have a connection to the Epstein-Barr virus (aka glandular fever or mononucleosis), but again not always. Having close family members with MS may increase your chances of getting it, but again, it just increases your chances, not even identical twins always both get MS. It’s more common in the Northern hemisphere, for some reason it’s very common in Scotland and also in Canada.

In my case, I am the only member of my family with MS. But, there are many different AI diseases in my immediate family. And I have several myself: autoimmune thyroid disease (Graves), MS (obviously), probable AI liver disease and eczema. My MS started virtually on my 30th birthday.

So as you have a pre-existing AI disease and are female, it is possible that your symptoms could indicate MS. But I doubt that treatment with Humira actually caused MS (if indeed you have MS).

It’s a good thing that your GP has requested that your neurology appointment be reclassified as ‘urgent’ so you are seen sooner. But as you rightly say, there is no prejudging the outcome of the neurological examinations and tests. It may be MS, or possibly not.

I find the subject of the origins of MS and AI diseases generally to be quite fascinating. Of course, having a few myself does make me more interested than I might otherwise be!

I do hope your appointment is brought forward soon.

Sue

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