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I guess Dr Diana, that the diagnosis of POTS is not straight forward. I was told by my rheumatologist, a well known one in the EDS world, that I very probably have POTS. He did a lie to stand test (not quite poor man as it wasn’t long enough) but I did have an increase in heart rate very quickly by 23bpm, with no BP change, although it was via a regular cuff, not a continuous monitor (so perhaps the exact rise wasn’t known). However, a lot of the specialist centres (e.g.: Vanderbilt) seem to think that the increase of 30bpm+ needs to be sustained for at least 10 minutes for POTS to be diagnosed. The guidelines seem to be very specific to avoid over diagnosis don’t they. The initial heart rate spike can vary between (non pots) individuals naturally, it is if the spike is maintained or elevates more that is significant. In some it seems obvious, such as in hyperadrenergic POTS. I guess the point i am making is that just because you fall short of traditional POTS criteria doesn’t mean the EDS isn’t making you pretty ill!! You still have dysautonmia, which incidentally, like a lot of medical problems, must be a spectrum disorder mustn’t it? Therefore the mechanisms causing the autonomic type symptoms in EDS are no different whether you fulfil the POTS diagnosis or not. I feel it is important to state that, to avoid people trivialising symptoms and people just falling by the wayside. These individuals (me, possibly) would still benefit from treatment with Diamox, and other treatments you might have lined up based on your revised theories…. Look forward to hearing about it….
Don’t worry Joey2423. A pulmonary embolism was pretty much ruled out almost straight away. Trouble with these illnesses they can be great mimickers of serious or life threatening illnesses, always best to air on the side of caution and not always assume that every symptom you have is as a consequence of POTS etc… I hadn’t even heard of POTS, and only vaguely dysautonomia when I first got sick in december, and as I had just got off a plane to Australia from UK, pulmonary embolus was at the forefront of my mind. Thanks for your concern though….
I have double checked and it’s not me, you need in privacy settings make sure ‘everyone’ can add you as a friend. Yep FB is temperamental….
Well firstly diabetes could be significant here, at least potentially. Not sure if you type 1 or type 2, and if you type 2 if you on medication or insulin to control? Anyway diabetes can cause damage to nerves as you know I’m sure, and autonomic nerves are not spared. Nausea is certainly an issue as damage to nerves can cause your gut to slow. Perhaps ask your gp this? It’s more likely to happen if your diabetes is less well controlled. Don’t want to presume this is happening to you, but see your gp as they might want to address it, or refer you to a specialist. You may need something to help with the nausea. Again gp.
Yes, as the flu jab exposes you to the viruses that its trying to protect you from, ie in very mall amounts, it probably is possible it could have caused you to us e these symptoms. The problem is causation in autonomic dysfunction is very difficult to determine.
I haven’t seen anyone myself about the POTS aspect yes, because I have a lot of symptoms, I’m trying to rule out causes of it all. I saw a neurologist privately, said I am fine. Even suggested anxiety, I thought wow for £220! I am due to see a rheumatologist in two weeks. I do need to see a POTS specialist though and m thinking bout being referred straight to Prof Mathais in London, has to be private though otherwise a long wait as you say. I may look at more local, though its still Cheltenham, which is not down the road..
Blood tests are notoriously normal with the diagnoses with which this website is based around. Occasionally there can be abnormalities, it will depend on the what condition you have and your overall health. Certainly being iron deficient as a women is pretty common. You need to address that with your dr, you might need medication or supplementation. Actually supplements are a good thing as it is easy to be sufficient. Calcium and magnesium are important, as are the B vitamins and vitamin c.
I forgot to mention in last message that you can pay for a private consultation. Depending on the length they can be £150-200 upwards. Not cheap but might help, if you can afford it. Waiting time will be less…
Dizziness and nausea go together, so do get your ears checked…..if you been ill a few weeks only could be to do with the ear…
I’m near Bristol
Hi, sorry you are suffering so much. I think it’s particularly bad if you are normally very healthy and active, and then suddenly not. I have only been ill relatively recently without answers, at least yet, so know how dismal you feel. Firstly just to address your comment about waiting lists, these probably vary, I am not sure which type of consultant you mean. Are you specifically talking about a POTS specialist? There aren’t many about. Prof Mathais in London is considered the best in his field in the UK, and a Prof Grahame, same hospital I think, a rheumatologist who understands EDS and its relationship to dysautonomia, if indeed this is your problem (which I am not sure in your case). Have you spoken to your doctor or gp about all your symptoms and concerns?
But no it certainly isn’t normal to be dizzy 24/7. That sounds very debilitating and you certainly need an evaluation. Lots of things can cause dizziness but 24/7 is extreme. Do you have any ear problems? Can I ask how old you are? Certain things are more likely to be common in older people, and other things more probable in younger people etc. the stomach rumbling, well it depends if its in combination with other bowel issues, like reflux, nausea, vomiting, bloating, diarrhoea, blood etc… By itself it doesn’t sound troubling just an annoyance. I’m sure lots of people who have IBS will tell you, a gurgling bowel is very annoying! I’ve had that too, and often when you want it least, ahem in meetings, lecture theatres…. Joking aside, please go back and see your gp and discuss your concerns. Book a double appointment if you have to or can. If you not satisfied with your gp, see a different one, or consider a different practice. GP’s are as variable as anything…
Just to say the experience of POTS can be mild to incapacitating, so yes I’m sure dizziness is possible 24/7 but isn’t normal of POTS. People are often more light headed and sweaty, like they might faint, some do faint. Not sure you had this. Like I say try and see somebody. Helps to have someone along at the consultation…
When you take your BP and heart rate from sitting to standing, how much does it rise by? Rises in both are entirely normal, it depends if you have symptoms, which you do, so just to establish possible POTS, need to know those figures, so you can present to your gp. He/she will check them again I’m sure….
Hi Mortigger
Hope you are ok, you do seem a little anxious,, but it’s normal, everyone on here has been there, and some are still there. You mention a couple of diagnoses and a few symptoms so it’s difficult to gage exactly wht might be going on, but yes some of your symptoms might fall under the realms of dysautonomia and POTS. Have you done any Internet research, alongside this excellent site? Another is http://www.potsuk.org and http://www.dinet.org. Some useful info here and will help you assess your own symptoms against the criteria for POTS. But try not to fret, it might be that you don’t have POTS. I think on both sites it lists doctors that test for autonomic dysfunction In the UK, http://www.potsuk.org/doctors_list2 is the link on the POTS website. A gp referral is usually needed. Not a long list but usually includes a specialist in each region, so south west, south east, midlands etc… Not sure where you are. But feel free to ask anything, people are friendly on here and I willing to offer thir knowledge and wisdom. Look at one of Dr Diana’s excellent and informative videos, also a good place to start…:)It’s a complicated trio MJ that’s for sure EDS, Scleroderma, Raynauds. The first two can cause dysautonomia or POTS which dilate vessels more than they should, vessels are lax anyway due to the abnormalities of EDS. Yet Raynauds constricts causing the colour changes. It is certainly not a straight forward process. If I am upright for say a few minutes my hands become red and mottled (pooling) yet my hands remain cold. I don’t get the blue fingers though.
Other than skin thickening do you get any other features of CREST? Calcium deposits, oesophageal problems, tightness in hands? I guess when you contact the rheumatologist they will do some specific blood tests, not sure if you had them before? Fingers crossed it would be the limited type if you had it. All the autoimmune diseases are pretty horrid. What about dermatomyositis? You can get red thickened patches on the hand with that?
I became unwell about 4 months ago, quite suddenly really, though signs were there before. Lots of symptoms. Due to swallowing issues and nausea I lost a lot of weight through jan/feb. Initially I thought the weight loss was causing me to have stretchy skin, and to have developed a turkey neck! I mean I am not massively stretchy like some with EDS you see, but enough to make me wonder. In view of my continued symptoms, POTS, I’m searching for the reason why. Is it autoimmune, or EDS, or both, or something else like ME/CFS. I have had an MRI of the brain 2 months ago, yes I was poorly enough for the GP to refer me, and although it was reported as normal there are some subtle changes that fits in with Dr Diana’s theories. It’s getting a professional to agree with me now that I am back in the UK, that is going to be a challenge!
No, I have not seen a geneticist yet regarding the EDS. Its something I will be looking into. Do you have a family history of EDS? It seems to be obvious in some families the genetic link, not so much so in others. I know they look at family members as part of the clinical assessment. As far as I am aware nobody has it in my immediate family. It is possible for it to be passed by a parent without them having the disease I think. It’s inherited in a dominant fashion though. Trouble is if I had a negative result, no family history, a diagnosis is unlikely, even with stretchy skin!
Are you in the UK?
Hi MJ
Interesting. I have them on my arms, chest, abdomen and back. I don’t have them in great numbers but enough to notice. I thought they were cherry spots which are common, never even thought about them really until falling ill recently, and seeing signs of autoimmune disease. I have a couple on my right hand (infact same finger) one on my forehead, all of which came up today, and a few on my toes which seem to come and go (so may not be connected dont know). I guess I shall keep a close eye. Not sure if they are a function of autoimmune disease or EDS. They don’t blanch, which is not typical of the telangectasias seen in scleroderma, i think. Boundaries are blurred with these diseases. However vasculitus is an autoimmune disease, and if you have scleroderma or lupus for example, you are prone to others. I’m not sure if scleroderma leads to inflammation of vessels as such, say like in vasculitus, of which there are different types that affect different size blood vessels, but I guess the abnormal collagen must damage the vessels leading to small capillaries to burst. Scleroderma is a very complex condition I feel.Hi MJ
I assume you already have a diagnosis of EDS but not Scleroderma? Not sure what stage you are at with getting tests for Scleroderma. Have you seen your PCP or GP to get an autoimmune screen, in particular ANA? Firstly nothing is impossible, and I guess it would be possible to have both. It is a slightly odd combination as in classical EDS you tend to be stretchy due to a lack of collagen, but in scleroderma thickened skin due to abnormal collagen deposition. Is it safe to say you are thin and stretchy in some areas, say elbows, neck, but thickened over the forearms and hands? If you haven’t already maybe ask your GP for a rheumatology referral.
From my point of view, I don’t have a diagnosis, but have POTS/dysautonomic symptoms due to something underlying. I recently had a positive ANA test, negative for lupus, but with a few symptoms I thought suggestive of Scleroderma. I had a few issues with swallowing as well as thickened red patches over knuckles and elements of Raynauds. Being male though I thought I wasn’t sure. I had a repeat ANA 3 weeks ago and it was negative, though it notoriously fluctuates. Just in the last few days those red patches have returned and the raynauds to a lesser extent. So I’m still not sure but I have my rheumatology appointment in may. I don’t have a diagnosis of EDS either, though I am quite stretchy (not particularly hyper mobile). So less further along than you in a way but feel can identify with your current dilemma a bit. Good luck, keep us posted because if nothing else it is an unusual combination..Gosh, did the medical profession ever really practice holistic care? The last 20 years has seen attempts to bring in holistic practice into the training of doctors but it doesn’t filter though to the workplace sadly. The level of ignorance relating to a lot of chronic illness, but especially ME, CF, Fibromyalgia is shocking, especially in 2013. It is the bad attitude that is thwarting important research ino these conditions and more of an acceptance that these syndromes are complex and may have an organic basis.
