Just Diagnosed with Ehlers Danlos Syndrome

[irishgirl1980]

I have just been diagnosed with Ehlers Danlos Syndrome Type 3 on Monday at the Genetics Clinic though kind of new I had it as I am now friends with someone who has it as well. What kind of medications do people take for the pain as I always have joint problems. At the moment I have to decide whether to have my right wrist fused as I am in so much pain and now because I have got this genetic condition I do not know what to do. I am new to see my othopaedic consultant on monday as he does not know I have this condition yet. I also have madelung's deformity in both my arms and have had an ulnar shortening operation on both arms. Would gladly like to hear from people with eds.

[selmaS]

  I am glad u have a dr that is listening and helping u!!


The swimming and recumbent cycling was something I was also told would help...unfortunately swimming season is over now, and I do not have a way to pay for or go to a gym in the fall and winter months.,...and I do not have a recumbent bike to cycle on either...so, that is out for me.....

  I have looked at other sites, and get some info from them, I prefer MH as it is user friendly and I have so many friends here.....

Keep me posted on how u make out with this new dr and all the testing

      "selma"

[irishgirl1980]

Hiya Selma

The appointment with the rheumatologist didnt go well so I saw a new consultant tonight which went really well though I have got another 3 problems to put to my list. I have been diagnosed with fibromyalgia, mild scoliosis and murmur. I had some blood taken and having an ultrasound done on my hand as she noticed it was swollen and I do not remember hurting it. I was at the hospital for at least an hour which shows she was interested and dint think it was in my head which I felt the other rheumatologist did think it was in my head. I have gone on the EDS UK website and have registered so I can write posts. There are some really good comments. You should look in to the website. My rheumatologist has said to do some swimming, indoor cycling.

Speak to you soon

From

Irishgirl

[selmaS]

  Hi..it seems we can have pain all over...wish I knew all the answers but I don't.

Do keep me posted with what u find out on Monday.

  I am doing ok...no major spasms, but some aches in my joints....some ear pain, blurry vision...not much more.

  Getting ready to start a new project to keep busy.

  Praying all is well with u

    "selma"

[irishgirl1980]

Hiya

Hope your well. Just a question can you get eye pain if you have eds. The reason I ask is I went to see whether I could have laser eye surgery, had tropicamide put into my eyes which I got a headache and then got eye pain with photophobia. On examination my eyes were fine and was referred to a neurologist who has said I am over sensitive to pain. He is trying me on a drug called nortriptyline as it is helpful with chronic pain. I am seeing my rheumatologist on monday to go through everything.

Speak to you soon

[selmaS]

Goodness, well I know many of us that have EDS and chiari do have autoimmune issues.....not sure if that is y u were able to get this and have it lay inside u until it decided to bcome active......

I would think hydrothreapy would help ur asthma....this is odd to me too.

Unfortunately I have been MIA a bit lately, so sorry doe being late in my reply.....hoping that soon my xtra responsibilities will soon be done with as  they r taking a toll on me....my feet have been swelling up and they hurt like the dickens.....I am so tired too.

  "selma"

[irishgirl1980]

I do not know how I got it though it is becoming more prevalent in the united kingdom again. My dad had gone to kenya in the august 2008 so wondering if I caught it off him as some people can fight off the infection as there immune system is working but I obviously caught it but then it lied dormant till now. It is definitely to do with my immune system as I had the BCG vaccination(in ireland) when I was a week old. When I was 13 years old we had to see if we were immune to the BCG which it showed I was but when I was volunteering at a cancer hospital in 2001 they needed to check me again and I had no immunity so had the BCG vaccination again. I am due to see my consultant tomorrow to discuss treatment.

Hydrotherapy hasnt gone well as I had an asthma attack and had to go to hospital so will not be able to have it anymore. I have also injured my tendon in my big toe and I wheeled a roll cage over my foot - very painful and I am also getting my pain in my upper arm and I dont know why. I had a shoulder op in feb which went well and I do not think it is that.

I feel so crap at the moment and wish I didnt have these health problems.

Speak soon

Irishgirl1980

[selmaS]

  My goodness, do u know how u may have gotten this?....I pray u feel better soon....and the meds kick in so u feel the benefits.

I have had sooooooooooo much going on too...my feet r swollen again and taking too long to  calm down....not sure y I have this swelling.

  "selma"

[irishgirl1980]

Hi Selma

Sorry for not updating recently. Been a pretty bad few weeks. I found out I had latent tb from june 2009 and because I started having symptoms they are treating me for tb though I have not got it in my lungs. I have to take 6 tablets a day and the side effects are horrible. I have not found any improvements yet and still do not think my symptoms are related to tb though I will have to see how things are going. My symptoms are still all related to lymphoma.

I have found out that I have one leg shorter than the other and will have to wear orthotics. I saw my neurosurgeon on friday to tell him about my tb diagnosis and to say that I am getting pain on the back of my thigh and more pins and needles in my back so am having another mri scan of my spine.

I have been having physio and now I am having some hydrotherapy aswell now.

I hope your ok

Speak to you soon

Irishgirl1980

[selmaS]

HI..I can understand ur being nervous, 4 months is a long while to be out of work...did u keep in contact with co-workers?...as that could help some....but, it will take time for u to adjust...so expect to be tired.The phased return is best...u step back in slowly gradually so not to shock ur system too much.

I had a lovely Christmas, I pray u did as well.

Now I have a head cold I got from family that would not stay home .....I would rather get together after the holidays if someone is sick instead of passing  germs around like they were gifts....yuck.

Seems every time I try to increase my activity I get really bad pain...I had xrays and CT scans and I go next week to see what if nething they found...but something is causing this awful pain...it lasts 5 days or so where it is really bad,

Out side of that I am doing well : )

Keep me posted on what u find out....good luck : )

"selma"

[irishgirl1980]

Hope your well. Hope you had a good Christmas. I did though had a really bad cold. I got my letter from the Rheumatologist who wants me to see a cardiologist as I have a mild mitral and tricuspid valve regurgitation(leak) and also a mild left ventrical septal hypokinesia which don't know what that is so just waiting for referral letter. I had a CT and MRI Scan to see if I have lymphoma as I have night sweats, breathlessness,itchiness all over body, small lymph node up without infection. Though scans have come back normal, I am still not convince and my consultant said he would see me after new year which I am glad about. I am going back to work on the 6th Jan after been on sick leave for 4 months. Going back on a phased return to build up my fitness. I am a bit nervous as it has been so long. Hope you are well?

Look forward to hearing from you

Irishgirl

[selmaS]

Glad to hear u do not have both to contend with....

Looking forward to updates : )

"selma"

[irishgirl1980]

Hi Selma

I do not have a chiari malformation. My neurosurgeon looked at an MRI scan that I had done in 2008 for another reason and he said I did not have chiari malformation which is good. I think with EDS type 3 there is less chance of you having a MVP and Chiari Malformation which is good for me. Speak to you soon.

Irishgirl

[selmaS]

Hi...I also had the echo done for the same reasons plus, they wanted to be sure I had no heart issues b4 a surgery I was going for....I was happy to hear u do not have the added issue of the MVP.

Good luck with the dr visit

"selma"

[irishgirl1980]

Hi Selma

I saw a rheumatologist last Monday and he recommended that I have an echocardiogram as some people with EDS have Mitral Valve Prolapse which I do not not but I have a mild leaky valve. I am seeing my neurosurgeon tomorrow(4th Dec) so I will have more info after that. I hope your well.

Irishgirl

[selmaS]

Good luck at ur next dr visit!!

: )
"selma"

[irishgirl1980]

Hiya

I have not been checked for chiari but am due to see my neurosurgeon at the beginning of next month so will speak to him about it. At the moment I do not know whether my thyroid is auto immune so I will wait to see if I have chiari and if I do I will ask whether my thyroid problem is auto immune. As I live in England we have a free national health service(NHS) so I can get physiotherapy on the NHS. I also have private health insurance which I use quite a lot but I have run out of physiotherapy benefit. I will let you know how everything goes with all my consultants.

Irishgirl

[selmaS]

Well I did have some aqua therapy and I loved it...just can not afford to do it all the time....
May I ask, did they check u for chiari?....if not, do not see a chiropractor until u do as it can make things worse.
Unless u find a chiro that knows how to manipulate the hiatal hernia so it is less of a bother.....not too many do this...so u have to check around.

Do u know if ur thyroid issue is auto immune?..Hashimoto's is common with those of us with chiari so I wonder...Hashi's can go either way hyper or hypo..right now I am hypo...but over the yrs I had unexplained weight loss so that is when I must have gone hyper.....

I hope u feel better soon and will keep u posted on what I find out and ask u do the same
: )
"selma"

[irishgirl1980]

I also have a bulging disk. I have had three epidural injections into my back. Didn't really work and my pain specialist wants me to see chiropractor which I can not afford at the moment. I have appointment with my wrist consultant on Monday and my neurosurgeon at the beginning of next month to tell them about my EDS. I will let my other two othopaedic consultant know by phoning their secretary up. I have an underlying immunodeficiency disorder, they know I have mannose Binding Lectin defieiency and I might have other problems,I have gastro problems including bile salt malabsorption and hiatus hernia, underactive thyroid, asthma and hayfever. I have just had septicaemia twice and at the moment feel awful. My geneticist told me to try the alexandra technique, pilates, physiotherapy with hydrotherapy pool.

Please Keep in contact and any updates that you get

Irishgirl

[selmaS]

Hi and welcome to the EDS Group.

I have EDS type I as far as I know, I have yet to get to the  geneticist for further evaluation.
I also have tethered cord, chiari malformation, Hashimoto's thyroiditis,DDD, a bulging disk, mild scoliosis...and who knows what else.

I wish I had more info on what I have been thru with my EDS..recently I started taking topamax to help with pain....and it is all too new for me to really add to this.

The meds were started on Sunday...and  I do not know all that much about ur condition  or EDS 3.

I do hope that others with EDS that r a little fut=rther along their journey will share sosme info with us both!!

Please keep me updates as to what u find out

"selma"