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Re: Anyone dx'd with MS and Dercums Disease, both?

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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

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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

>

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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.Â

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

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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

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