i saw a neurologist who did a nerve test. it came back fine showing no signs of small fiber neuropathy (who knew a quick test could rule that out so easily)
he said he was familiar with EM and stated i should just keep trying different cocktails and drugs … and this is just my ‘biology’
he has ordered an MRI which seems pointless. i assume it will come back normal. they are checking for lesions.
anyone have abnormal MRI?
(mine could take up to a year to get)
I had an MRI done about 2 weeks after I began showing symptoms. I think I was given priority because I was able to get it done immediately. My onset was explosive and not insidious. The rheumatologist who ordered the MRI diagnosed me with seronegative arthritis (possibly early rheumatoid arthritis) based on the findings, which said I had synovitis, inflammation of the synovial membrane. That could have been an errant finding based on the radiologist having never read an MRI of someone with erythromelalgia before. Suffice to say, I was not properly diagnosed based on my MRI findings. They thought it abnormal, but didn’t know what it meant. Basically, they didn’t know what they were looking at.
Note: I was in flare while I had the MRI.
I had an MRI and found nothing but as carterdk said they don’t know what they are looking for, or should be looking for. This is a crazy condition and you can spend crazy money.
Sorry I am no help. Just thought you should know in case you are paying.
Cheers
Iris
xoxox. thank you both for your responses
From what I’ve experienced and what I know regarding my own small fiber neuropathy the testing and the diagnosis is done completely differently. It appears as if they were looking at large fiber issues not small fiber neuropathy .
Sometimes they do start with testing of the large fiber nerves but ultimately it is the biopsy testing that’ll determine whether a person has small fiber neuropathy. The testing for it as I know it is through a skin biopsy. A specially trained usually dermatologist usually does a biopsy from three separate sites. These samples are then sent to a special lab to analyze. These labs are few and far between mine was sent to a lab in New York City, and as I Said there are only a few labs throughout the country. What these labs do is staining of the samples with a special red die. That enables them to see and count the small fiber nerves. Depending on how many healthy nerves they find gives you a diagnosis of no fiber neuropathy all the way to severe fiber neuropathy. Experts in the field of small fiber neuropathy are hard to find. My two neurologists said Jeffrey I’m sure you don’t have small fiber neuropathy. One of them said if you have the time and the money to waste go ahead here is the information you need to go forward with testing through outside medical facilities. I did go ahead guess what severe small fiber neuropathy both doctors One the head of neurology at his hospital could not have been more wrong. He said he would like to help me but it was obviously something out of his expertise. It was only after I had been seeing him for six months and had a positive small fiber neuropathy test did he suddenly admit it was all out of his expertise. He also said that if the mayo clinic where I had been going would send him a protocol he would be happy to follow their recommendations. I suggest you do your own research online to get a better understanding of how small fiber neuropathy diagnosis are made.
You also have to consider the cost benefit ratio. Unless an MRI were to pick up a causative effect other than erythromelalgia, it’s unlikely an MRI would be particularly beneficial. It’s similar with small fiber neuropathy testing. Treatment for SFN is based on the underlying cause, if any. For idiopathic SFN, there is only symptomatic treatment. Thus, there is currently not much medical benefit to SFN testing unless there is an identifiable underlying cause that can be controlled.
we have free health care here
the nerve testing was done with electrodes on my hand and foot. no biopsy.
the mri was ordered ‘just cause’. the neurologist i saw said he was familiar with EM so he must know it is pointless. i think he was ultimately feeling sorry for me and knowing he was unable to help me … so threw the mri in as a parting gift.
What type of test did you do?
in his notes he says small fiber neuropathy was not found… however in further investigation he needed to perform more tests unordered to rule that out
a sensor was placed on my right hand and foot that zapped like a tens machine. that was it.
Best test for SFN is punch biopsy.
My story. The two neurologist I was seeing said they did not think I had small fiber neuropathy. One of them said if you have the time and money to waste here’s the specialist who does this kind of testing. Well I did have the time to waste, and a punch biopsy from a specialist, was sent to a special lab in New York. The findings were severe small fiber neuropathy.
Cherry -
yah punch biopsy would be best. Since my face is the worst area, derms didn’t even think of doing it in my case, but my punch biopsy came back showing non-length dependent small fiber neuropathy (they do it at 3 different areas in the leg). I am glad I did it, as new research continues to be done in this area, but also because, now that i have objective evidence of a chronic pain condition, I sense some doctors take me more seriously. At my last PCP visit, I noticed he did not say the word “stress” at all lol. (He normally loves to try to pin my symptoms on stress.) I definitely think there is a bias against young women – esp. if they had previous diagnoses of anxiety/depression – when they come to their doctors with pain issues. I am hoping you have a different experience, though.
If you have a biopsy that comes back negative, I still think it might be worth re-testing in the future, maybe it takes time to manifest – Dr. Oaklander mentioned this in that lecture of hers, but not sure of the time frame.
Since you have patchy involvement like me (if I recall right), I def. think there is a good chance you have non-length dependent SFN as well (ie, not feet first), or it might be heading in that direction.
K stepping off my soapbox 
Hope you are doing ok.
Best,
Wanted to mention my mom had an MRI for a different problem and they used a contrast agent and she was okay with the entire procedure. But this was for a different injury, although she had EM. She had a contrast agent with the MRI.
Fast forward to yesterday. She had some other issues with bleeding which required an ER visit and we went to Beaumont Hospital in Trenton Michigan. We like that place from what we have seen. We were in ER and they ordered a CAT SCAN for her other condition.
Her feet were fine and had been chilled in ice water in the car ride there. They were starting to warm up slightly but she was in fine spirits, although we were nervous about the bleeding and wondering about the tests.
They took her into the CAT SCAN machine room. There was a “level 1” trauma that had been in ER and quite a crowd near a door near that hallway. I heard some commotion of someone complaining about pain and figured it was the level 1 trauma patient. Then I realized it was my mom and she was in extreme pain and experienced an extreme flare. She went from her normal pain level, maybe even reduced a bit from the chilling of her feet on the ride there to a nice little ten level flare and it was like being put in a furnace with pain extending up to her knees. She had flare heat looking symptoms around the base of her toes and on the base of her foot. She had no redness or heat visible in the legs or knees but pain.
The contrast agent was called iopamidol (ISOLVUE-370)
It caused a flare. There are many side effects to this agent which includes: Arterial spasms, flushing, vasodilation, chest pain, cardiopulmonary arrest, CNS confusion, temporary blindness, temporary amnesia, convulsions, paralysis, coma). . . skin and appendages (eg, inj site pain, apllor, preiorbital edema, facial edema). . . and others.
Needless to say, she has that contrast agent added to her list of medications we will be avoiding.
I think the MRI place did a test of the contrast agent with her before they gave her the MRI. In this case the ER folks didn’t do that, and maybe they couldn’t even do that or know.
The pain was really a bad flare. She called it the worst.
Other things like Potassium, Metropolol, Amitriptalyn, Risperdol and Xanax have caused flares in the past and Risperdol was the cause of the onset of her symptoms according to what we witnessed and what her MD at the time of her horrible EM onset saw when it came on her.
With CT CAT scans one may have to worry and wonder about the real need for that as a diagnostic. An MRI might be a better option as well when you consider CANCER risk can go up to 1/150 when you get a CT cat scan according to one study, if I recall the article correctly. An MRI would be a lot safer than that in theory. The MRI takes more time however and it’s a problem for some EM patients and a challenge to be in a MRI even an open one for 45 minutes or whatever the time of length they take.
We at least got a picture of how bad her other bleeding could be and whether it was a real immediate emergency or life threat. They wanted her to stay there, but we opted to go home and see what happens and if she improves. We can always go back if her other problem continues.
One of the challenges for our rare case is we need to have someone likely in the room with her to attend to the medical chilling of her feet and our small family (my old father and I can’t be there 24 hours a day and do that.) It’s to much planning and expense to have her stay in the hospital and risk more flares from possible screw ups. I’m not necessarily blaming the hospital folks for the flare, who would know?) But obviously one has to be careful as we have been “burned” literally by bad care at other hospitals in the hospital and that long stay was a nightmare compared to just taking her home.
MRI agents used for contrast may be different. You may want to consider how you might respond to them and if there is any testing that can be done to avoid a bad flare.
The flare was dealt with with cold ice packs with ice in them. They used a couple squeeze cold packs at first, but that wasn’t enough chilling power and we had an EB ICE cooler which recirculates ice water into a large chill pad and used that as well for her legs. That helped her recover fairly quickly. At least enough to get to the car and ice water in her dish pan of ice water for the return trip.
This sounds awful. I think at home is the best place whenever at all possible. Its where we feel safe and most comfortable. And we know what care need and are best understood. Well done you for taking such great care of your Mum. Take care of you too. Regards Sharyn
My daughter began her em flaring immediately after a cat scan - she never had any flaring before having the procedure.
thanks so much for sharing