Hi,. I've been off this site for a while & would like to connect with other women & men in pain & fatigued & struggling to navigate seeking health care for a rare disease.
I updated my profile and tried to change me email to receive notifications on a g mail account. The changes to do appear to be saving????
Hi Margie, I'm Karen. The fatigue and pain I can definitely relate to, although I also have severe Rheumatoid Arthritis, so it's a case of take your pick where the symptoms are coming from lol x
Thanks for responding! The correct diagnosis & then treatment is the hard thing! I was diagnosed with what they thought was Rheumatoid Arthritis & then reactive arthritis. The only +test was the Hg.. The inflammatory disease gene & my CRP inflammation has been slightly high. Due to pain & stiffness they put me on Methodtexate & Humira saying positive tests sometimes don't show up for years. With both of those meds & prednisone sometimes pain improved although never completely. Then I got a Lung infection & had to go off those meds. Now even with 50 mg of Prednione I have pain & tingling so it can not just be an inflammatory disease. Weeding it all out & treating the right thing the right way is hard!!
How do you decifer what symptoms are from what disease?
Margie
I inject tocilizumab once a week for RA. I had to stop methotrexate as I was losing my hair. My RA consultant said a while back, that my bloods were showing as normal, so I asked why was I still in so much pain in my legs and feet, she just said, 'Oh that's probably the damage that's already been done'. I did question if it could be ALD, she said it could be. I could tell she had no idea what ALD was. I do kind of know when it's the RA, because of the heat and swelling. I know I need to be referred to a neurologist now, but I'm so depressed at the moment, I just can't seem to focus on sorting it all out. I have only seen a neurologist once, just to see if symptoms of ALD had started, and he never done a follow up. I was told I had mild nerve damage in my legs about 8 yrs ago. My main concern at the moment is my urgent need to open my bowels, it's this problem that is making my depression worse x
I'm sorry Karen. I've heard bowell difficulties are linked to ALD. I have a sensation to urinate a lot of the time. It's embarrassing to feel like you have to go so much & sometimes then when I try nothing comes out & other times a lot. I'm considering having pads on now & wearing for periods when I don't have access to a bathroom , just in case.
It's hard to get past the "emotional " part of chronic disease .. To deal with the depression that holds grief, loss, anxiety - fear , anger.. Addressing your feelings & practicing self compassion & self care is imparative.
Do you know if their is Facebook page we can join or should we start one for information,support & sharing how we are addressing challenges...
Hug,
Margie
All these comments today hit home. Sorry you are suffering but glad that its not "all in my head" as I once was told
There's ALD life and The Myelin Project on FB. I'm on both of those. ALD life are good, I've contacted them in the past.
Where are you from Margie? I'm in Portsmouth, England x
Thanks Karen, I joined those pages & trying to attend the 2 day conference in San Diego in Novrmber.
They do not know enough yet on how the dirsease affects women. 20 years ago they said we have no symptoms. Now they say 80 percent have symptoms many start symptoms in 40 & 50.
In the Netherlands so many women have symptoms the say they have ALD not carrier syndrome. It appears there is more focus on women. Hopefully this will lead to assessment tools identify hi sumptuous in women & faster treatment and less actual mistreatment of us witchin the main stream medical community.
Hug!
Margie
Is thos Margarite Crespillio by chance?
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