When my EM/ SFN/ Raynaud's symptoms first started a few years ago I was looking through my print outs of monthly blood results from the local lab and asked my GP if anything in these could explain my symptoms i,e burning pain in peripheries with widespread pins and needles. He said he didn't think so although there was plenty of systemic inflammation as he would expect to find in someone with RA/ Autoimmune disease. My ESR and CRP generally fluctuate according to how stiff my joints feel and how unwell I feel generally. Lowest ESR/ sed rate has been 17 and highest 72 - generally somewhere between 30 and 65 presently.
So today I was looking again because I am probably going to be trying Asprin for the EM soon and I wanted to check out drug compatibility with Duloxetine, Naproxen and Ranitidine. I read that Asprin is a blood thinner and that it is sometimes prescribed for people with Polycithemia. So I looked to see what my red blood cells are like and I notice they are consistently at the highest end of the normal range for both RBC and MCV. Could this be relevant to my EM symptoms does anyone know?
I’m sorry. I have no idea. My doctors haven’t found any thing in any of my tests that would explain why I have EM. I know that other than genetic EM there aren’t any diagnostic tests for EM . Unfortunately there is very little known about what causes EM specifically besides the genetic form. There is a wide array of conditions that EM is secondary to but not much is known as to why.
I’m sorry I couldn’t be of any help.
Thanks for replying anyway Alina. I feel I might be getting closer at last to persuading my doctors that my EM (and I do believe mine is this despite the lack of reddening) is part of my RA/ autoimmunity and that might in turn lead to a more effective treatment. Fingers crossed!
Polycemia Vera and thrombosis are often linked to EM. But it’s “usually” linked to adults in their 6th decade of life. My Rheumoto logout has 1 other patient with EM secondary to a myeloprolifitive disorder and has her on aspirin. One of the disorders creates too many platelets. But it’s in the high 300,000s.
Oh and NotRed, you mentioned not having the trademark reddening of EM have they checked you for any kind of neuropathy? Usually a neurologist can do a nerve conduction test to see how well your nerves respond. And that can b caused by all kinds of stuff, diabetes, viruses, pinched nerves from herniated discs or sciatica… All my labs are normal for the most part, but I def get the burning red hands feet nose and occasionally ears. Best of luck!
Thanks so much for your comments Lauren. I had nerve conduction tests with a neurophysiologist as part of a 24 hour visit to the neuro sciences ward in hospital ten days ago. I also had a range of specialist blood tests and MRI x 2 of brain and cervical spine plus a lumbar puncture.
The MRIs came back clear apart from arthritis in my neck which the neuro consultant said isn’t touching my spinal cord. The nerve conduction EMG was fine too and it was actually the neurophysiologist doctor who suggested EM and went off to tell my my neurologist. But my neuro thought EM unlikely because of the lack of reddening and said that anyway very little is known about it - but he said he would write to my gp suggesting Asprin and if this worked then it’s probably EM?
Haven’t seen GP yet or had results of special bloods for Lyme abd other stuff or lumbar puncture results. He did say it would take 2 weeks. I see my GP on Friday. I have a confirmed diagnosis of RA but presently seems to be inactive despite a high sed rate.
My red blood cells aren’t so high that they flag up - just at the very top of normal range. I think this could just signal inflammation/ autoummunity though. I may start another disease modifying drug soon but for now I’m just on a low dose of Cymbalta - 30mg - which does absolutely nothing for my pain - apart from cheer me up a bit and increase my appetite - which I suppose helps indirectly although I have to try and resist eating more!
NotRed- no I dont it’s very strange because with all the symptoms I was having at first they thought it was lupus,ms,Lyme,and scleroderma. But all of my tests came back negative, and my sed/esr have always been low! I have hypothyroidism but dr hasn’t put me on meds yet. I take somas and Ativan at night to sleep, and it keeps me asleep a few hours which is GREAT! I notice I flare way more with less sleep so I crash out at 8pm wake up at 7 to bring my kids to school and if I’m lucky get to go back to sleep
Yes I think we are all like that with sleep Laurent. I think having a raised MCV might be worth investigating a bit more yourself if nothjng else shows up. I know lots of people with autoimunity that doesn’t show up in their blood. I’m lucky with ESR and CRP that are always raised and match the fluctuation of my symptoms - otherwise I don’t think I’d be taken very seriously by anyone - and maybe won’t anyway soon as all my issues are currently tied up in the burn/ freeze thing and severe fatigue.
I’m hypothyroid and I do take levothyroxine - have done for years now.
People on the Thyroid UK HealthUnlocked tell me that my thyroid still isn’t well controlled and my burning Parasthesia symptoms are probably down to this. But my GPs say this is nonsense and I feel I have to trust them over people I dknt know on a forum. However if my Rheumatologist and neurologist tell my GP that this is Fibro - as I suspect they might then I plan to try swapping Levothyroxine for Natural Dessicated Thyroxine as the forum people suggest and see if this gives me relief.
But if you are still not treated for yours it is worth pushing to try thyroxine I would have thought.
What is ur B12 and folic level like? Have u been told u have macrocytic anemia or is higher end mcv something u have found on old tests whilst searching for answers?.Hypo and borderline common in EM. Big hug.Thinking of u .Bless u. Prepare that evidence we spoke about x
Thanks so much Jane and Mads. I have had all the tests you ask about Mads - B12 normal and folate too last time it was checked. I was just trawling through my blood results - of which I have many - and found the MCV and RBC were always within normal range but at the very top is all.
I’m now on Asprin. The lumbar puncture showed high immunoglobulin levels which my GP says confirms I have an immune mediated small fiber neuropathy. The rheumatologist and neurologist think it’s a case of needing to treat my symptoms rather than cause for now. I have specialist blood results still to find out about as they take a long time. Will give Asprin 2 weeks at medium/ low dose and then review. Week 2 he wants me to drop dose of Duloxetine so we know which med is working or not.
GP thinks I have a mix of EM, SFN and Raynauds going on as part of my RA/ autoimmune disease. So far Asprin has only made my guts ache as do all NSAIDs but I’ll keep going!
Will keep a record of changes and photos etc too as you advise
Jane yes I’m aware of expertise in Dundee as the neurophysiologist told me and Mads gave me names of EM aware people in Scotland. I’m going to give it a bit longer for Asprin to see if this helps or not. I see GP again in 2 weeks and will explain about Dundee then. I would like to have the nailfold capillary tests for Raynauds too and apparently these are done in Dundee. If my Rheumatologist can only focus on joints ever as seems the case - I feel he should refer me to someone with more expertise in Raynauds/ EM / Scleroderma. But my island health board are incredibly strapped and are unlikely to pay for me to travel or see anyone else when we have a rheumy who comes here every few months. NR
Hello all, haven't been on for awhile as I am always so ill.....
so with the MCV, mine is always high out of the normal range for years- have EM and many many other conditions, everytime I ask why it is always high, the Drs always shrug and imply its no big deal, but they say that about everything
can ya'll indulge me for a moment? I have medicaid insurance here in CT which basically renders you an "untouchable" by the medical establishment, this as well as having chronic, debilitating ,rare and hard to diagnose diseases-(double pariah)
I try to amuse myself from time to time ,(laughter is the best medicine), and came up with this list of descriptive adjetives to describe Dr's attitudes, interestingly they all start with letter D except for a few at end
