How can we tell if it's MS or not?

[Donna_S]

My husband was diagnosed with MS in 2011 after being told he had brain cancer and having to have biopsy's done. He was then cleared of cancer and told no it's a demylating disorder. From there it was MS. He has sclerosis on his brain and neck (c4-t7). They have gotten better with Tecfidera. The problem is he seems to have relapses with no new sclerosis forming or new activity. He has had a stroke and has been hemiplegic since all of this started. His stroke was really bad and required NeuroICU for a week. He has tried Ampera and it didn't work, tried Copaxone twice didn't work either time, tried Tysabri and it was horrible. We went to being reactive and that's how he ended up having the stroke.... So now after being on Tecfidera for about 3 years it's like he's having relapses but there is no activity when we do an MRI. Is it possible that they start the steroids early enough to prevent the damage? Is it possible to have traces of MS in the spinal fluid and not have MS? I guess I'm wanting to figure out if he actually does have MS as nothing is totally working on him. He gets cluster relapses and he's going down hill. He's 56 years old. Has diabetes and now has seizures as well.... I'm afraid that all of this medication without having MS could be causing the seizures..... Our neuro tells us he's complicated and that our neuro doesn't know what to do any more. He's given up and is going to send DH to another doctor who specializes in MS. If it's not MS then what. He has been tested and re-tested for everything at least 2-3 times. John Hopkins couldn't figure out if it was MS or not. In fairness though the hospital had given him steroids prior to the brain biopsy's... I'm looking for any information or directions to look and do research on so I can find a solution for him. His life right now is in a wheel chair living on Oxycodone for the pain......

[HVAC]

It is rare for a MS diagnosis to be reversed. Just because you have MS does not mean you can't have other medical conditions such as stroke. Men progress faster than women with MS. MRIs do not tell the whole story. There is gray matter damage which MRIs do not show. It is normal to feel the MS diagnosis was a mistake. Most of us go through that at some point. MS goes differently with each person. They would not have put him on MS drugs unless they were sure.

Alex

[supermum_ms]

Hi Donna and welcome to our little MS community,

I truly sorry to hear what your husband has been going through, his neurologist is trying to doing the right thing by him and acknowledging it's beyond his skill set and referring him to an MS specialising neuro, id recommend you get this happening as soon as you can.

Your husbands situation is definitely not typical, we've learnt over the years that having MS doesn't make you immune to having other unrelated medical conditions, with some of our community having preexisting and or additional diagnosis's happening after being diagnosed with MS.

None i can think of have your husbands combination though, but i think your going to find that your husbands diabetes is 'more likely' responsible for his stroke and new seizure activity because both are highly associated with diabetes, where as strokes are unrelated to MS and seizures are rare in MS.

People with diabetes are somewhere around 4 times more at risk of having strokes, and diabetic seizures are an additional serious complication of hypoglycemic, so it just makes more sense to me that MS is less likely to be the main issue here.  

He probably wouldn't of been misdiagnosed with MS, if he has both brain and spinal cord demyelinating lesions and 2+ Obands, i've never heard of "cluster relapses" before though so i'm not really sure what your meaning. There would have to be the potential because of the stroke, that he's been having TIA events, that could go towards explaining why there's not been new or existing demyelination evident but keep in mind that it's still 'possible' for him to of been relapsing or having pseudo relapses and the MRI wouldn't of shown it, if it's done outside the 30-45day time frame.

The steroids don't actually stop demyelination from showing on an MRI, technically if he was relapsing and new areas and or older areas were being attacked again, it should of shown up IF the MRI was done within the time frame. There not exactly sure why steroids work, they know that steroids can help to reduce the inflammation, shorten the duration of a relapse and can help speed up recovery time, basically steroids help reduce the amount of damage experienced but if steroids prevented or stopped MS attacks steroids would be the solution and they unfortunately are not..

DMD's do not work for everyone, and it can take time to find the one that works to slow down and reduce relapses, i think one the main problems with your husband is actually knowing if he had been experiencing MS relapses or if he wasn't....the Tecfidera could actually be working for him and the attacks he's experiencing are not due to MS but his diabetes and higher stroke risks and until he's had this specifically worked out i'm not sure where to direct you, research wise.

I genuinely feel the best thing to do at this stage, is getting a second opinion with an MS specialising neurologist, there's too many unknown factors to his situation, so i think it's really important to get him in to see the MS neuro asap and if you can, i think it might be better in this moment to focus on what treatment options eg pain management, physio therapy etc will help him right now and let the MS neuro work out his future MS treatment options down the road.

Hope that helps..........JJ