Hi everyone, I joined these forums early last year I think - and I haven't been very active. Lifes been amazingly good and also amazingly bad - its been a pretty hectic roller coaster. I joined these forums to get advice but also to offer support to others - which I haven't be doing very well. I'm sorry (again) for being rather quiet and innactive.
Recently - I have been diagnosed with Ehlers Danlos type 3 and Orthostatic Intolerance (in addition to the Raynauds and Fibro dx).
I know raynauds and EM can go hand in hand - and it got me thinking;
I get Livedo riticularis, Raunads, Blood pooling and also EM type flares (which feel very different to blood pooling). My Rhuematologist mentioned that I was going to be a tricky one to treat - since my issues go both ways (i.e. trouble with vassoconstiction - and also vassodialtion). How does that work? ..
I know stretchy joints, ligaments, tissue, veins etc. are symptoms of EDS, and the OI and blood pooling are secondary to the EDS - and by what the doc was saying recently (the one who diagnosed me with EDS 3 and OI ) the raynauds and blood pooling are part of this too. I'm struggling a bit with regulating body temp too (has always been an issue - but seems to get worse) I havent come across anyone else on these support groups that seem to have an issue with EM though - but was wondering if EM would go along with all the other types of vasoconstriction and dilation problems. if its related to EDS 3 - why do my ears or one ear, or face, or upper extremities sometimes burn up?
I'm kind of typing aimlessly here - just writing down thoughts.
I guess my question is - If I were to see someone about EM / or at least what seems like EM - what kind of doctor should I be hunting for? A neurologist? a Neurovascular doc? a vascular doc / surgeon? I honestly dont have a clue.. So far physio, cardiologist, clinical pharmacologist / MD, and G.P all have no idea what it is - and the flares have settled a bit at the moment - and hasnt been the most pressing issue, so its kind of fallen by the wayside. If things flares start to happen every few days again - (which it seems is likely to happen eventually - if past experience is an idicator), just curious who on earth I would see? or might be able to say yay or nay to EM, and if not EM, might have some clue who to speak to?.
** Alina - I remember you experience issues in the same places as me - and your pics look very similar - I think you may have mentioned neuovascular instability - I was wondering if you had found out anything further? and also what kind of doctor you see? **
It is great to hear from you again! Please don't feel guilty about not being so active lately. I go through periods when life is busy or extra difficult when I am not on as often as I would like and I am a moderator!
I a glad life has been very good and so sorry it's been very bad for you too. I get that. I don't really have periods of what I would cal very good but I do have periods when it isn't as difficult anyway.
I am not familiar with EDS so I can't say for sure if this could cause EM. Is this a type of rheumatologic disorder? If so Autoimmune conditions are known to cause EM. Just because you haven't met someone on their support site with EM doesn't preclude it from being a possible cause. EM is so rare even within those conditions that have been known to cause it.
As far as doctors go that is always a challenge. Have you checked out our work in progress DR recomendations above for one knowledgeable in your area? You can also do a search here for dr and your area to see if someone has mentioned something about that in the past discussions. There are several different types of dr that treat EM....Neurologist, Rheumatologist, Dermatologist, Primary care ,and pain specialist. Pretty much any doctor can. There isn't a real EM type doctor because it is just so rare and there are many different causes for this condition.
The most important thing when finding a doctor is one that believes you and is willing to experiment with different treatment options even if they are not knowledgeable about it just that they are willing to learn. If you already have a doctor you feel will listen and help with different therapies either they suggest or you bring in from research papers that might be as good as it gets. obviously try to find one knowledgeable with EM first. My rheumy and pain specialist are both helping me with my EM.
I really don't have any new information on my condition nor have I made any progress since we last spoke. I do have a pituitary tumor they think might be causing me intermittent cushings and if so could be my cause for everything I have going on....way too long a list!! They are going to admit me into the hospital soon for 5 days to run tests for cushings syndrome and if it turns out I have it they will surgically remove my tumor and I would hopefully be returned to normal!!! keep your fingers crossed I have cushings.
I have inherited EDS and Raynauds. My neurologist, who was first to diagnose the EM, insists that it is entirely neurological so I suppose I would recommend finding a neurologist. On the other hand the best Raynauds/EM care in London is provided at a dermatology clinic. Like everything else to do with EM it is a conundrum.
Wow Alina - I really hope the operation to remove the pituitary tumor goes well and relieves your symptoms - that would be brilliant :) Thanks for listing a range of docs working in range of areas i.e. dermatologist, Neuro etc. - I was also thinking Neurologist was probably the next type of doc I should try - so thanks for mentioning it. I will keep my fingers crossed for you - that the tests are helpful and reveal lots of useful information and that your surgery goes well ! :D
Hi Nel - may I ask what type of EDS you have? I was also thinking that EM might have some Neurological involvement - since I have such issues with body temp regulation (sometimes regardless of what outside temperature is doing) and issues with autonomic system. It is difficult to know whether Derm or Neuro is best to try first - but I will keep goolging and searching and see which I might have a better chance with. I suppose it really comes down to the knowledge of the Doctor - rather than the particular field of medicine they're in.
Hi MeowMachine. I have Hypermobility EDS so am relatively lucky. I should say that I haven’t pursued this with the doctors on my own behalf. My elder daughter has all the same symptoms and was given the diagnosis of 'Inherited Hypermobile EDS and there is no doubt who she inherited it from. Not just from me but from mother and grandmother - all with similar symptoms. I will be seeing the neurologist soon and am looking forward to his opinion. He knows about the individual symptoms but not the diagnosis of EDS. Laziness and lack of mobility (recently broken leg) have stopped me asking to see an EDS specialist. I am leaving all that to my daughter and will then pinch her medication;). No just joking. I will see what is suggested and whether I think there is something I could add to my repeat prescription list. You are right that what matters is the individual doctor rather than their speciality, for information at least. I treasure my kind neurologist and rheumatologist.
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MeowMachine said:
Hi Nel - may I ask what type of EDS you have? I was also thinking that EM might have some Neurological involvement - since I have such issues with body temp regulation (sometimes regardless of what outside temperature is doing) and issues with autonomic system. It is difficult to know whether Derm or Neuro is best to try first - but I will keep goolging and searching and see which I might have a better chance with. I suppose it really comes down to the knowledge of the Doctor - rather than the particular field of medicine they’re in.
I have hypermobility and am suspected to have a penentrance of ED but I haven't seen much connecting EM and ED. But other connective tissue diseases have been associated with EM - so maybe they are linked and it's just a matter of time before this connection starts appearing in scientific articles.
THank you Meowmachine for the words of encouragement. I am not so much worried about having the surgery as I am worried that having it might not make any difference in my EM. Then again it could make it go away entirely if it is the root cause and not just another piece of this crazy puzzle.