1. Community
  2. Bones, joints and muscles
  3. Orthopaedic Disorders

Forestiers Disease

Posted , 3 users are following.

helen31374
helen31374

Hi everyone!  Just thought that it would be nice to talk to other people regarding Forestiers Disease.  Was only diagnosed three months ago after complaining for a very long time that something was not quite right.

Am wondering why they keep telling me it is genetic, we have done the research inot both side of the family and went back four generations, nothing!!!! 

No one on either side has any form of forestiers or even any major arthritic changes!

I have since found that over thirty years ago I was given a range of steroid injections and non steroidal anti inflammatories that caused some contraindications within my bodily systems and was wondering if anyone else has no genetic history of forestiers but who may have been given incorrect medications that have had a very adverse effect on their bodily systems.

The reason I ask is that over the years I have suffered through every hormonal issue known and then the bones and joints decided to break down and then reform in some very annoying and even dangerous areas.  I have a very large bone spur pressing into my oesophagus that is causing major issues with swallowing and eating.

Have 85% of my spine showing spurs and the melting wax syndrome.

Have nerve damage in neck and left arm and also in the lumbar and leg areas.

Really need answers as would you believe a lot of doctors here do not even know what it is!!!

 

1 like, 6 replies

6 Replies

  • smab97
    smab97 helen31374

    Posted

    Wish I could offer you some good advice, thankfully I don't suffer. Is there no group that specifies in this area? Maybe worth a search.
  • bronwyn97278
    bronwyn97278 helen31374

    Posted

    Hi Helen; I, too, knew nothing re this condition,(so may not be of much help)....but went onto a very good medical site, which explained a lot....what it did mention is that Hormones do affect/can cause this condition.....(one comment made was that teenagers treated for Acne, can develope this condition due to the imbalance of hormones)...so maybe this was the origninating problem that caused your current problems???

      They did go onto to say that when the condtion becomes too bad (as in nerve damage, and growths affecting the Oesophagus), it may need an Orthopaedic/back Specialist to assess the problem, and may require Surgical Intervention to remove these Spurs.....am sorry as this is really a very worrying/uncomfortable time for you, and needing as much research/information that you can find....hoping someone else can give you some better advice/know where you are coming from.....will be following your blogs/inputs from others......Bron

    • helen31374
      helen31374 bronwyn97278

      Posted

      Hi Bronwyn,

      Thank you for you reply I was pretty sure that mine was not gentically passed on but am having little or no luck finding any research that backs up claims where hormones can casue issues!

      I guess i just have to deal with this on a daily basis and get as much enjoyment out of life as possible!  Luckily I have a wonderful husband and family that support me at all times! smile

    • bronwyn97278
      bronwyn97278 helen31374

      Posted

      Afternoon Helen;  have been thinking re your answer "of having to deal with this on a daily basis".  However; I feel if it were me in your situation, I'd be looking/researching for a knowledgeable Orthopaedic Surgeon, for if I understand what I have read, properly, I feel that the spur/s in your oesophagus and the neck/back could be quite easily be removed through "key-hole" surgery....I would definately be trying to have the neck and throat ones removed, as with a very good surgeon, I am fairly sure that he/she could go in and remove same without doing any damage; and it would release the nerve in you neck, and allow you to swallow.  What do you think?   Are you fortunate enough to have Private Insurance?  If so, then you have a wide range of choices in doctors....if not, speak to your GP re what he/she feels.   I havn't read if the spurs re-occur? but will continue to research for you, as this has got me very interested, and feeling for you  (I feel sorry enough for myself at times, and nothing compared to what you are trying to live with)...I have had Key-hole sugery on my shoulder in 2010, and am so pleased that I did so....let me know what you think?      Bron
    • helen31374
      helen31374 bronwyn97278

      Posted

      Hi Bronwyn

      Unfortunately we do not have health insurance otherwise I feel a lot of my other problems would have already be dealt with.  Im not sure where you live but I am in Australia, and have been steadily reading up on everything i can find about this disease.  I really did not think that at the age of 50 I would have the bone structure of a 70+ yr old.

      Everyday is a struggle and as I also require knee replacements this is putting much more pressure on my lower lumbar area where they told me that I know have spondyliothesis as well as stenosis and nerve damage, wtg me!!

      Sorry i try hard not to feel sorry for myself but some days the pain and immobility drive me nuts, i have to use a walking stick because of my legs, I have torn tendons in right foot, and spurs on both heels this does not help.

      How do you fare?  Is yours genetic or some other form?  Did you have steroids or any major hormonal imbalances in the past?  this is part of my research you dont have to tell me if you do not wish too, but every litttle bit of information helps.

      Thanks so much for your input already, it makes me feel better to talk to someone else about this problem, much appreciated!

    • bronwyn97278
      bronwyn97278 helen31374

      Posted

      Hi Helen;  sorry if I've misled you in that I don't have your condition...it's just when I read re your first input/question, my brain started "ticking"....I, too, live in Australia (northern suburbs of Brisbane)....and if you are near, I can Certainly give you the names of 2 very good Orthopods  (even if it's only for some advice)????  the other way I find knowledgeable specialists is to search the Internet.....I also make a lot of use of my Local State and Federal Parliamentary Members, if you find you are not getting the assistance that you need from your local hospital??   If you would like me to continue reserching for you/even a voice to listen to you when you are having your bad days, you can message me privately through the "little box to the left" of your name on this site....will be waiting for any replies.............Bron
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.