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EDS with scoliosis

Posted , 2 users are following.

pam_87693
pam_87693

I have EDS confirmed, I have POTS confirmed I have scoliosis in 2 areas of my spine does anyone else have this? I would be most interested to know what you feel is happening. Do you feel odd. Have you felt like this all your life.  

Did you have dyslexia? 

Did you have Dyscalculia? 

Were you anxious?

Do you know what Elhers-Danlos is? 

So you know what Scolisis is? 

How many bends do you have in your spine?

When were you diagnosed? 

Have you had any children? 

When did you stop growing? 

I would be most interested to hear what you say! 

0 likes, 5 replies

5 Replies

  • vicky89033
    vicky89033 pam_87693

    Posted

    hi pam i have seen you on another forum for autonomic neuropathy and you seem very knowledgeable on a few different conditions i wounder if you could advice me i was diagnosed with fibro jan 2014 but since june 2014 have become very ill i have seen every specialist possible and still no one can say if my symptoms are fibro,autoimmune, autonomic neuropathy or even lymes disease. my symptoms are so numerous its confuseing all the doctors they are as follows- headaches/migrains-blarreed vision,light sensitivity-balance problems,tinitus-digestive problems-weight loss 14kg (now under weight) muscle pain,twitching and waisting-joint pain all over body-neuropathy burning stinging itching feelings -pins needles and numbness (all body inc. face)-low blood pressure,palpatations-reocurring oral trush-difficulty swallowing-sinisitus-dizzy weak episodes-swollen glands-always have mucuss in throat. any advice would be great im at my wits end and feel if no one knows whats wrong i will never get treatment or get beter
    • pam_87693
      pam_87693 vicky89033

      Posted

      Hi Vicky I know exactly how you feel as I too have no clear and precise diagnosis even after diagnosing my own GP with Elhers-Danlos Sydrome myself and hang to autoimmune diseases. If your confused, so is my GP and I certainly am. It would seem intact every doctor and consultant I have ever seen is still confused and I'm 68 years old. If that isn't enough the Neurologist upon leaving said I'm amazed your alive. Well so am I but that doesn't alter the fact that I still don't have a clear diagnosis! 

       

      Lets sart. If your bewtween 35-60 it could be an onto immune disease called surgeons sydrome, or its big brother Lupus. Your GP will need to do bloods. The post and only important test for both is a raised AnA (antinuclear antibody test) 

      If that bloods are bpneagtive you may have Ehlers-Danlos you may be double jointed, bendy and good at sport. That's great but you do bpneed to tell your GP if you are. This can also five you the above problems. That's the EDS I'm talking about. To complicate it still further there're were 10 types but now the medics have lumped them together It makes it more difficult to understand if your double jointed then yout type III and there is no cure or test you have very slightly abnormal collagen. You were born with it its dominant and inherited. However do tell your GP, dentist and any consultant you see.  If that isn't enough there are some types where you may not be double jointed it only affects the collagen inside your body such as the veins and arteries or the bowel. All of course will give you fibromyalgia. Then there is Lupus. Well 5% won't have any markers for anything it depends what gives you Lupus. If you have PCOS a hormone imbalance unless your in agony you won't have a marker! Failing that you may have ME Myalgic encephalitis which was one wrongly name yuppie flu. It's not, the medical profession do now take it very seriously and there are self help clinics at many surgeries. I do hope this might help you. There is one other avenue which I won't go into right now until you have explored all the others.🍀🍀🍀

    • pam_87693
      pam_87693

      Posted

      Sorry about the incorrect spelling and stupid words my brain fog is getting so dense I can hardly see! Need to tell your GP.  This can relate to all the above problems. Sorry about the rubbish. There are of course numerous other problems that start with fibromyalgia including stress, exams, personal troubles, overworking, not enough exercise, obesity, too much exercise, having children, pregnant operations etc. 
    • vicky89033
      vicky89033 pam_87693

      Posted

      thank you pam, i have been tested for lupus and had blood test for ANA neg. ive never been double jointed. ME has been mentioned but im not convinced its that alone. ive had the tilt table test this week to see if its autonomic neuropathy but i didnt faint as they expected during the test. i have had my hormones tested nothing obvious wrong there.
    • pam_87693
      pam_87693 vicky89033

      Posted

      Vick it's an outsider I know, buy have you ever had an MRI? if so what for? You will not believe this I went to the top neurology hospital age 8 and returned Lat year I returned age 68 and all I found on the TT test was I felt sick and as of my eyes were being drawn backwards as if I had a huge magnet in the back of my head. If you feel faint have jaw problems, tinnitus, photo sensitive, there is just one possible Chiari! I'm not trying to frighten you but as I was born with it yet STILL have not been diagnosed other than in a rather vague bone nuclear scan, I cannot understand why on earth after all the tests all the wrong operations I didn't need (private) we are now so poor I can't afford to have one to prove this and GP in Sussex cannot refer me for a MRI. 
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