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Hi,
Im new to this site and was recently referred to a consultant who diagnosed me with Bi-Polar.After 3 visits I began talking to him about my cognitive difficulties and tiredness I have had for many years.he beleived they may be an organic cause so sent me for blood tests and a CT Scan.
My ANA is raised and he beleives i have Lupus.I am seeing the neurologist next week and have been reffered to the rheumotologists.
This is agreat releif as throughout my life i thought all my symptoms were psychosamatic and some how caused by me because i am "mentally ill":eek:
,or at least that is all the Doctors have beleived.I thought I was a hypochondriac as I have had so many bizzare symptoms that would come and go.In the end i just lived with them and my husband and children beleived it ws just part of me.

Now everything is falling into place.
I feel really guilty sometimes as i understand "The ripple effect" on my family:(a Is there a support group for them in coping with me.As my husband does get extreemly frustrated and perhaps needs to vent his frustration towards the disease rather than me or the children.:eek:hno:


Thanks for reading,
;) I feel I am the weakest link!


Goodbye.
 

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Hi and welcome to this excellent site. So sorry to hear of your difficulties - but don't be so hard on yourself.

Your story chimes a strong chord with my own experience and, frankly, that of a large proportion of the contributers to this site. Depression is a symptom of lupus - not just because of problems encountered in trying to deal with the illness and the reaction of others, but also because it can change the chemistry/functioning of the brain.

I was being treated for depression, with a question mark on bi-polar - (due to lethargy with sudden bursts of energy for about a week at a time - something that also happens with lupus) - and my psychiatrist told me to get certain physical symptoms that had appeared, checked out by a neurologist.

This led to a brain MRI, an initial diagnosis of MS and, following a visit to a rheumatologist, a subsequent diagnosis of lupus.

I think my first husband thought I was a little bit loopy (and not in a lupus patient sense). My moods and energy levels were up and down and I kept ending up at the GP or hospital with various ailments. He would say that "when I was good I was very very good and when I was bad I was horrid". Anyway, I was distressed by his demands and not being listened to - and ended the marriage. When some ten years later I was diagnosed with lupus (which, it appears I've probably had since I was 4) a childish and truly unattractive of bit of me longed to explain to him that it hadn't been all in my head after all!! ;)

I'm sure that everyone here will agree that lupus has an enormous effect on the family and friends of patients, both before and after diagnosis. The disease is so unpredictable and can be very debilitating at times. Of help in coping with it is to become as knowledgeable about it as possible, find a good team of doctors with whom you can communicate, and share your concerns with others who are able to understand what you are going through and can lend their support. In my case, this site has been a life saver.

There is a board on the site for loved ones and carers to post concerns and share experiences and I am sure others who have experience of this will be along to tell you more.

Meanwhile, take care and understand that it will take some time for you and your family to take on board any diagnosis. The good news is that with diagnosis comes treatment and improvement in your condition/symptoms.:)

Merle
 

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Hello and :welcome:

It sounds like you have a good doc there. It's reassuring to know that some of them do look beyond what, to them, seems obvious.

Feel free to ask any specific questions you may have in the different sections of the forum. We have a lot of knowledgeable members here who are more than willing to share their experiences and give support.

It is very difficult for families to get used to living with someone with a chronic illness but with time things improve. Also, once your medication has kicked in you should see a big difference in your quality of life.

Bye for now :)
Katharine
 

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Hello welcome to this site
i found it very helpful im currently awaiting diagnosis.
thank u for sharing your life thus far u will get listening ear here.
lv countrylass:)
 

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Hi and welcome to the site. It is a great place to get info and support. You have already been given excellent advice. Do you take your hubby along with youi to the doc? Sometimes it helpsd if they can hear how the illness affects you, I know it helped my hubby.

I hope they can get your meds sorted so things improve for you.

Take care

Deb
 

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Hello and welcome to the best place on the net.

I am sure you will find this place to be supportive and the people are just fantastic. It has been a god send for me, my home away from home.

I agree that you should take your husband with you to the next doctors appointment. It is hard for many people to comprehend something they cant see on the outside.

The Spoon Theory is a excellent read for you and your family. I love it so much I have printed it out and when questioned, I just hand them a copy. After they read it then it all makes sense.

Hope you get on with feeling better soon.:wink2:
 

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mea
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Hello and welcome
The people here are great and have knowledge on vast number of things pertaining to this awful disease.
Sorry to hear about trouble in being taken seriously,it's a problem I and many others have had as well.I think the problem stems from lack of awareness in the general public,and I must confess before being tested for lupus myself I knew next to nothing about it,and dr's need to have more training in auto diseases.It got to the point where almost every dr was saying "you don't look sick" and they should really know better.

mea
 
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