Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My doctor has evaded telling me what I'm being tested for, but I was sent to a neurologist who did an MRI of my brain & spine, now I'm being sent to have an evoked potential test and had a blood sent to immunology, which was negative. I have a follow up appointment in a couple of weeks, but I'm wondering, if I'm right in thinking they suspect MS, then what other tests are likely and does it take long before they reach a decision?
So far the neurologist has just said they will wait and see what the tests reveal before speculating on what it might be and my primary doctor hasn't been available for weeks.
I've read a bit online, I see I have some general symptoms of MS. Two years ago I was diagnosed with Ehlers-Danlos syndrome (after years of symptoms coming and going). Symptoms of EDS (my symptoms) include mobility problems, digestive & heart problems, muscle wastage & spasms, eye problems, widespread pain & fatigue. It's rarer than MS and considered much less serious, but I was sent to a rheumatologist for diagnosis, so he diagnosed a rheumatological condition and it was later confirmed by genetics. The rheumatologist said the numbness and strange sensations in my hands was probably carpal tunnel. No-one suggested a reason for the terrible raw burnt feeling I get on my forearm and toes sometimes. BUT then everyone stopped looking for solutions because EDS is incurable and there is no real treatment. I now know that having EDS is actually a risk factor for developing MS, no reason why I couldn't have both.
My symptoms have been ignored for the last two years because they can all be blamed on EDS. Then my recurring right eye pain & cloudiness came up again in conversation with my doctor, as well as my great response to baclofen for my muscle spasms & my doctor had a sudden lightbulb moment and sent me as urgent to neurology!
Sorry this has become an essay, but I'm just feeling a bit overwhelmed by the thought I might have two incurable conditions and I might have been missing out on treatment or advice all these years.
How does the diagnosis process go, what can I expect?
So far the neurologist has just said they will wait and see what the tests reveal before speculating on what it might be and my primary doctor hasn't been available for weeks.
I've read a bit online, I see I have some general symptoms of MS. Two years ago I was diagnosed with Ehlers-Danlos syndrome (after years of symptoms coming and going). Symptoms of EDS (my symptoms) include mobility problems, digestive & heart problems, muscle wastage & spasms, eye problems, widespread pain & fatigue. It's rarer than MS and considered much less serious, but I was sent to a rheumatologist for diagnosis, so he diagnosed a rheumatological condition and it was later confirmed by genetics. The rheumatologist said the numbness and strange sensations in my hands was probably carpal tunnel. No-one suggested a reason for the terrible raw burnt feeling I get on my forearm and toes sometimes. BUT then everyone stopped looking for solutions because EDS is incurable and there is no real treatment. I now know that having EDS is actually a risk factor for developing MS, no reason why I couldn't have both.
My symptoms have been ignored for the last two years because they can all be blamed on EDS. Then my recurring right eye pain & cloudiness came up again in conversation with my doctor, as well as my great response to baclofen for my muscle spasms & my doctor had a sudden lightbulb moment and sent me as urgent to neurology!
Sorry this has become an essay, but I'm just feeling a bit overwhelmed by the thought I might have two incurable conditions and I might have been missing out on treatment or advice all these years.
How does the diagnosis process go, what can I expect?
So can the results of the MRI be that conclusive then, are they often?
Other forms of MS have lesions appear on the spine, not my case. I think what Chrissy has described as the diagnosis process, is more typical.
I suspected MS over two years ago but completely put it out of my head since then and accepted my growing disabilities are due to EDS, which certainly they could be, except muscle spasms, numbness, burning sensations, eye blurriness & pain are not common symptoms of EDS. Widespread pain, joint instability& muscle wastage, stomach and heart problems are. I've blamed it all on EDS and my sister keeps asking why it is suddenly worse these past few years when in hindsight I was born with EDS. She has a point. I see my neurologist in 11 days and might or might not get answers then, it just seems such a long time.
I guess what I, trying to say is don't give up on finding the answer, you have to be your own advocate I've learned that more than anything. Write a journal of your symptoms daily and bring it with you to your appointment so you can ask all the questions that you need to. To get this last diagnosis I had to fight and beg my doctors to listen to me i told them all that I thought i was going to die if they didn't look beyond the MS and EDS because I literally felt like I was dying so finally when I saw my PCP and I pulled out my notebook of symptoms she (on a hunch) tested my cortisol which came back low I was then sent to an Endocrinologist who did this special test and after a hour of trying to chemically increase my cortisol only got it up to .6. Then came the Addisons diagnosis. If I hadn't fought for the answer this one literally could have killed me.
What I hope you take from this ( if anything ) is fight for yourself, fight for your life, make your doctors listen to you otherwise they will generally treat what is in front of them (whatever is the simplest easiest answer) sometimes you just have to make them look harder.
Michelle