[charolett]

hello,
I got dx with Lupus this summer, and my confussion has really gotten worse and the forgetfulness. I have been losing my meds It seems like when one thing goes wrong it all snowballs for me. I had a MRI on the 27 of Dec I got a call from a Neuro office telling me I need to come see them they gave me a appt. fro Tuesday. I called my Rhemy the nurse said my blood work and bone scan was fine but my MRI had some abnormalities, I asked what does that mean and I was told I need to go to a Neuro and let them go over it with me I said I will just tell me something do not make me wonder all week end. Then she said it has something to do with white matter and gray matter. Someone help me does this mean MS???????????? I know my my confussion is bad I thought it was Lupus fog I still have joint pain and bone tired everyday. I am so sick of stressing over my health and SSID. my husband has been laid off for 6 weeks now and he is home too much. and tells me I am not trying hard enough to remeber things!!!! I feel like I am going crazy noone understands me anymore It seems like these illness are taking over my life..... Any advise will be helpful
Thank you so much for being here for me when my own family is not...
I hope noone else feels this way Take Care
Charolett

 

[hazel595]

hi Charlotte
I am so sorry that you're having such a hard time at the moment...this is the very time that you need family and friends support.

I just wanted you to know I also had the white matter and lesions on my brain and spine. I was oringinally diagnosed with MS but after getting a referral to a specialist lupus clinic it was soon realised that I had APS/Hughes Syndrome and Lupus and not MS.

The question of MS still hangs over my head but since the diagnosis of APS and being anticoagulated with Warfarin/Coumadin the MS symptoms I had disappeared. As long as my blood stays at the therapeutic range of 3.8 -4.0, this means my blood is nearly 4 times thinner than someone who is not on warfarin, my memory improves and the confusion stays away. I do find if my blood becomes too thick then the MS type symptoms can reappear.

I would advise that you ask for blood tests to be done to see if you are positive for the Anticardiolipin Antibodies or the Lupus Anticoagulant which if postive on two seperate occassions which are done 6 weeks apart with your current symptoms means you could have an APS Diagnosis and not one of MS.

The symptoms you have could also be Lupus related......try not to worry till you have further tests to rule other stuff out.......I wish you luck and send love and hugs xxx hazel

 

[charolett]

Thank you Hazel,
You have made me feel better I guess I will know for sure in the morning my appointment is at 10 am I will let you know the outcome!!!!! Thank again
I hope you the best of luck Charolett

 

[Lily]

Good luck with your appointment Charolett :luck: let us know how you get along.

love
Lily

 

[halfpintfl]

Hi Charolette, I am sorry that you are not getting enough support, but that is what we are here for. Hubby says, "Why draw so much blood", and I just say, she is just trying to be thourough. When I am called in for an explanation of a test, hubby says" It must be bad if you have to go in?" I just say that she wants to make sure that I get the facts, and get them from her. Things like that will help calm him down. talk to ya soon.

 

[raggedyann1]

Charlotte,

I can understand your concern over results from the MRI. However nurses really aren't the best people to get results from as they don't know how to interpret the nuances that are visible or what types of spots you might have. I am very sorry that your husband is being so unhelpful and obviously doesn't understand. One suggestion is to take him with you to the Neurology appointment and/or your next rheumy appointment. Sometimes when they hear it from the doctor they are more accepting of the issues. Do you think he would read information on the CNS issues that occur with lupus? There is lots of information on the internet that explain the symptoms.

Let us know how you get on.

Take care,
Karen

 

[charolett]

my appt. with neuro

I had my appt with the neuro and he said the spots on my brain was from smoking!!!!! I have never heard of such a thing. He did take blood and said he thinks my confussion and forgetfulness is from depression has anyone heard of this before???? The dr. and my husband just looked at me like I was crazy and faking my illness!!!!!!!!!! I can tell yall I am now DEPRESSED!!!!! I hope noone else has to feel this way.....
Thanks for listening to Charolett

 

[julsie]

Hi Charolett,
I feel exactly the same especially since my appointment yesterday!It seems that depression is the reason for every symptom,especially when they don't know what's going on,when in reality it's the doc's that cause the depression a lot of the time!
I hope you can get a second opinion,or at least that the neuro is sending you for more tests,
julsie

 

[Clare.T]

Hello Charolett

Oh my goodness you poor ((((dear)))) nobody could blame you for feeling depressed

How on earth can the neuro be sure of that the marks were "caused by smoking" especially when you have lupus anticoagulant and most likely the blood clotting condition called APS, short for antiphospholipid syndrome. Dear me, this all sounds so unfair.

Are you being treated for APS with blood thinners? What medicines are you on these days?

Yes smoking is bad for the health and can cause clots especially if there are other risk factors and yes depression can cause brain fog, cognitive difficulties as they call it but so can lupus and APS and which is what and which is chicken and egg is another question.

I am sorry that your concerns were dismissed like this. It sounds as if he didn't treat you with courtesy and kindness which is the worst whatever the message, and the least that we should expect.

Many hugs
Clare

 

[Lily]

(((((((((Charolett))))))))))) I'm fuming on your behalf :angry: :hug:

He sounds like he knows nothing of APS and Lupus. It's probably true that one could get areas of infarct if you smoked and smoked long enough. But if he had really taken into account your symptoms and the fact you have clotting antibodies then he would not have made those comments.

I presume you are going to see your Rheumy soon? If so then they will (probably and hopefully) ignore this ridiculous assumption and realise that there is more going on .

Was the neuro aware you had the clotting antibodies I wonder? It pays to give them all the info and I wonder if that was done by whoever referred you?

sending strengthening hugs to you,

love
Lily

 

[keebler]

(((((Charolette))))

Sending you some big, soft, tender hugs.:hug::hug:

We are here for you.

:love2:

Lyn

 

[Raglet]

I am wondering if the neuro is saying that the spots are in the range of what can be considered 'normal', as we all collect some spots on our brain eventually. It is part of normal aging, which starts earlier than any of us like to think !

Maybe your doctor was just being a moralistic prat by saying that smoking caused them ?

I have no clues really, but this is just what crossed my mind. I guess I am always trying to work out what they mean when they say stuff like that rather than just dismissing it out of hand. I definitely know that some types of spots are normal, and as my neuro tells me 'we all collect some as we go along'.

get an opinion from another neuro if you are concerned, I would.

hth

raglet

 

[zay]

Charolette

I think you should get a second opinion because its very serious and life changing. I had an idiot opinion years ago from a neurologist and obvious signs and symptoms he overlooked and now I can't sit up long enough at the computer to write hello in the introductions forum. My biggest activity now is driving my daugter to and from school and I am afraid sometimes that I won't be able to drive her one morning because I do not know how I am going to feel each day until I get up. I don't want to scare you but its a long way back to healthy from an idiot diaqnosis. Also, try to stay as calm as you can, even with the craziness all around you, so you don't get sicker and you can pay more attention to your body and your symptoms. Sometimes loved ones (actually most of the time with lupus), are scared and don't know how to react or deal with it and they are wrong for being unsupportive. I read a book awhile back that helped me a lot. I think the title was "Sick and Tired of Being Sick and Tired". I will look it up and if that isn't the title I will post again. Hang in there, you have made it through all of this. When you get a supportive doctor (and there is one out there your loved ones will be able to understand more too!

 

[hazel595]

Charlotte I am not sure if getting a second opinion is the same in teh USA as it is in the UK but have a look at his website which is an official UK National Health Service website offering information.

It will tell you what a second opinion is and why you can request one, the advantages of having a second opinion, useful links, how to get the most out of your appointment with a healthcare professional and the questions you should not forget to ask.

Click here to find out more.

Hope you will find the information helpful xxx Hazel