Erythromelalgia and MS?

Hi, I was wondering if there was anybody who has EM and MS.? I haven't been on much because of failing health but really need some advice.

I recieved a medical report (that had been lost in the system for 16 months) which was meant for my pain management specialist that I should've got after my brain and cervical MRI in May last year that says there are some hemispheric white matter lesions and a left cerabellar peduncle lesion. The distribution raises the possibilty of demylenation and satisfies the McDonald criteria for dissemination in space.

I had absolutely no idea what that meant so googled it and found out that it is a possiblilty I have MS. I have spoken to the consultant that I saw for the tests in London and he has said that I would need another MRI before a diagnosis of MS can be made but I am worried because I had a completely normal results from my MRIs in 2009 and now they are saying I have 10 lesions, temporal lobe lesions and periventricular lesions (medial to the left ventricular trigone) There are firther lesions within the left cerabellar peduncle.

I was hoping that somebody here might know a little about MS and would be able to help me out and put it in a way that I understand. I have been referred again to neurology for further testing but the waiting is really stressful. I haven't even been able to talk to a dr about what the results mean for me and been told it could be a month before they can get me an appointment.

Thanks from a scared Laura

Hi Laura,

I'll ask my dad (retired doctor) if he has any knowledge of this type of thing. I do know the two scans is standard. I think my sister had some problems in one scan but they'd gone by another, so it wasn't MS.

It's appalling that this has been lost in the system for all this time. However, it could, I emphasise could, be a mistake. After 16 months, it is possible that the wrong scan was studied for the report.

I can only hope that it isn't MS or anything like it.

Lots of hugs, from a very worried Star.

I'm so sorry this has been lost laura. :(

It is possible that one MRI might show no lesions and another done much later show something.
Not knowing what your symptoms are , or why you are thinking the possibility of MS is in your future, I don’t, know what I can tell you that you might find valuable.

What I can tell you is : If you DO have MS that does not mean MS has you!!!
I am always bothered when I read an obituary and it says that the deceased had MS. MS is not a death sentence- Yes, the disease may weaken your system, but one can live a long and fulfilling life with it.

I am sure you know there are basically two types of MS, Relapsing/Remitting and Primary Progressive.
Re- examining my life, I probably exhibited the first symptoms in my late 20s, over 50 yrs. ago. It wasn’t until 1990 that I first saw a neuro.- after tripping over my own feet one too many times- (due to foot drop, a symptom of MS) .

I am fortunate. I have Primary Progressive MS. The first MRI I had in 1990 did not show any lesions. Things may have changed as far as diagnosis since then. I believe in 1990 MRIs, Evoked Response Tests, Spinal taps and Blood tests to rule out things like Lyme disease and Lupus,were about the only actual tests that were performed. Symptoms such as muscle weakness difficulty walking and vision problems were the indicators. As my Neuro. said- “if it walked like a duck and sounds like a duck it probably is a duck”. My second MRI in 2010 showed 2 inactive lesions.
( Possibly MRi’s have improved since 1990)

I have raised a family, had a career and only now am using a walker. I don’t have any real pain, just some tingling in the feet. I have not been diagnosed with erythromelalgia, but I seem to have some of the symptoms, hot flares and swelling of the feet and legs. This is probably secondary erythromelalgia.
I wish you the best and hope you hear something definite soon.

Hi Scott,

I am sorry to hear the possible diagnosis. I am very interested in any additional information. I too have white matter in my brain. I just found out last week and have been very worried about what it might mean. I was looking into the different health issues that have white matter in the brain a symptom and yes, MS is one of them. I ended getting my MRI done along with an MRA because I keep having blurred vision and enormous head pain, extremely unbearable. I am not thrilled with the prospect of having MS, like you. what does that mean? is there a connection to the EM? I have to wonder.......................

I was diagnosed with Primary Progressive MS in 1992 and began showing symptoms of EM in 2000 but was not diagnosed until 2008. I also have Raynaud's which was diagnosed in 1992. EM is most likely secondary to MS. Symptoms from my MS are mainly in my lower body, as are the EM symptoms. The Raynaud's affects my feet, hands and face. When people ask me what's wrong I tell them it's a perfect (imperfect?) storm of 3 diseases and try to explain. Walking is difficult with my poor balance and coordination from MS and the searing pain and swelling from EM. My feet will be ice cold to the touch while burning from the inside out.

Dear Laura,

I have EM , congestive heart failure, thyroid disease and on and on. What I do know is God is right there walking your walk with you. I have had so many surgeries that I don't even talk to people about them because I sometimes am looked at like I am making all this up. My EM (14 years now) is really taking its toll on me. My neuropathy is horrible and I can hardly walk. I just want to pray for you. Pray that you can not live in fear but live in peace. Our time on this earth is just a blink of an eye. Allow others to see how strong you are (and I know you are). I am volunteering at a pregnancy center trying to save babies from abortion. This brings me so much peace. I will not let this (EM) or anything else bring me down. I pray that you won't either. God bless you and give you peace!!!


I now have my appointment to see a top MS specialist in my local neurology dept. I was referred to one Neurologist who didn't feel qualified to see me so referred me to somebody senior who then in turn referred me to Dr Lee who not only speciualises in MS but also teaches at my local university. Weirdly all this happened without anybody actually seeing me, hopefully the added wait from being re referred 3 times will be worth it.! Thanks all for your replies and support.!

Laura xx

so glad you got an appointment.