Guest guest Posted May 13, 2008 Report Share Posted May 13, 2008 Hi Sorry, can't help you out with that one. My neurologist has said nothing about Dercums or Adiposis Dolorosa to me, but then it took him 15 years to diagnose MS, by which time it was secondary progressive, although I do still suffer relapses at the rate of approximately 3 per annum. I also have genetic haemachromatosis and several of the patients with whom I attend hospital for venesection have close family members with MS. Good luck with your neurologist! Very best wishes, Lesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2008 Report Share Posted May 13, 2008 Lesley - Thank you for your quick reply. Dercums is usually first noticed with many painful lipomas that have mutated fat cells, appearing anywhere on the body. So, unless you have those, you probably don't have Dercums. But interesting that your other disease is a metabolic disease; Dercum's is also metabolic/immune/genetic disease. I'm very sorry to hear you have a genetic iron disease, though! How awful! I looked it up on the web and sounds like it causes all kinds of complications; I hope they were able to catch it in time before it caused permanent damage to your organs!! So, yours is genetic, hmm? Do you know if something specific triggered it to come out of dormancy and become predominant? Virus(immune response), meds, diet, etc.? I have to assume you have a difficult time monitoring both MS and haemachromatosis concurrently. It seems that there are probably a lot of MS patients who also have additional metabolic/immune/genetic diseases, as well. And, as you stated, your MS is " secondary " progressive to the iron disease? Do they think/know if your iron disease may have been a contributor to the MS? There just has to be some kind of correlation, don't you wonder? I wish these diseases were better researched or/and understood so we could identify the causes of these things. I know scientists are trying to do that so they can create cures, but in the meantime, we are suffering so terribly while we wait. It's tough to sit and wait... If I indeed end up having MS along with DD, I am going to have one heck of a time trying to create a health program for the two. As I've been reading the MS posts and knowing what has been recommended for Dercums, they are polar opposites!! I also have endometriosis/ adenomyosis, nephritis & complex kidney cysts(consistent protienuria & hematuria), liver cysts, gastro disorders, arthritis, and on and on... I was just lucky enough to find the Dercum's yahoo group and realized I had all of the symptoms that were discussed. I was then able to connect w/the only endocrinologist in San Diego, CA who was researching this disease. I sent her a tissue sample and was then diagnosed with certainty -within the fat tissue, there were inflamed nerve cells, vascular components and other oddities that didn't belong in normal fat tissue. After discussion of my neuro symptoms, it was the Dercum's group that referred me to the MS group - so here I am. We certainly all need to continue being our own advocates for these diseases so that we can find the help that is needed...a long road. Anyway, sorry to ramble, but I do thank you for the reply! I don't feel so all alone here. Please take very good care of yourself, Lesley! S. > > Hi > Sorry, can't help you out with that one. My neurologist has said nothing about Dercums or Adiposis Dolorosa to me, but then it took him 15 years to diagnose MS, by which time it was secondary progressive, although I do still suffer relapses at the rate of approximately 3 per annum. I also have genetic haemachromatosis and several of the patients with whom I attend hospital for venesection have close family members with MS. > > Good luck with your neurologist! > Very best wishes, > Lesley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2008 Report Share Posted May 13, 2008 Dear I think I've probably had MS since I was in my early twenties (I'm now in my early fifties). I think I had my first relapse nine months after giving birth to my daughter - I had great difficulty with balance, double vision and light sensitivity. I've had many relapses over the years, but have weathered them out. Once fatigue became a tremendous issue and my eyesight had deteriorated substantially with permanent diplopia (some 20 years ago), I had to give up work - my employers' decision, not mine (no Disability Discrimination Act back them). Desperate to return to some gainful employment, I started to really push my G.P. to give me some answers. I then embarked on a long and difficult journey from department to department of the local hospital and, whilst most of the consultants thought I probably had MS, the consultant neurologist (relying on the results from a CT Scan) said not. It took a further ten years before I eventually got the MRI Scan and was told there was a lot of damage to the white matter in my brain and it was MS. This was confirmed by lumbar puncture. The haemachromatosis was only diagnosed three years ago and is wholly genetic. I really don't know if the mutation of the genes involved was anything to do with the MS, I have been told not, but I don't necessarily believe that the two aren't linked, as MS is present in family members on my mother's side of the family. Thankfully, the haemachromatosis is kept under control by venesection - for the first two years this was done fortnightly, but has now been reduced to four times a year with frequent monitoring. Scans have shown that there are no obvious signs of damage, although I do have the tell-tale signs of bronze patches. (It used to be called bronze diabetes apparently). Modern medicine doesn't have all the answers - it just likes us to think it has. Secondary Progressive MS is just a label attached to MS patients when they reach a certain stage. I think after fifteen years or so of symptoms you are labelled as either having Secondary Progressive or Benign MS. Take care Lesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 I don't know where you live and the training that your GP went through, I live here in Atlanta and my doctor is a graduate of Emory University Hospital (Decatur GA), I have also gone to the Shepherd Spinal Center to have my original diagnosis of Multiple Sclerosis legal for my ex-boss, insurance, Social Security and anyone else that would need this information.... I am 52 right now and was diagnosed when I was 40 looking back on my past that I was probably manifesting symptoms when I was 15! Does it run in my family? No one knows about it there but I have one aunt and she and her daughter both have Lupus which is an immunological disease. I have taken Avonex and Rebif as well as Solumedrol steroids seeing nothing from any of them, I am now in my 17th IV session of Tysabri. We know that Tysabri does not heal MS but only stops its progression so that our bodies can repair any inflicted damage, I had MRIs done when I started and one every three months after I started Tysabri and the MRIs show that I still have the same number of lesions but they have gotten smaller! REMEMBER THAT YOU HAVE MS... IT DOESN'T HAVE YOU! Mark/Atlanta Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.