The Lupus Forum banner
1 - 9 of 9 Posts

·
Registered
Joined
·
4 Posts
Discussion Starter · #1 ·
Hi guys,

I'm at the end of my tether at the moment, and I'm sure I won't be the only one, but I'm completely and utterly fed up with doctors, appointments, and every test you can imagine.

I'm now back to square one AGAIN. First I was told MS, then that it wasn't MS, THEN I got an official SLE diagnosis three months ago, so at last I knew what I was up against.

I had an appointment with my Rheumy last week (actually ended up seeing one of the minnions) and now they've pulled the rug once again and I'm back on my a**e!! Apparently now it's NOT SLE and they think it MS again. All this despite numerous positive tests for Lupus and numerous negative tests for MS.

Everyone now seems fixated on my eye problems (blurred / double vision (though not at the same time thankfully!!) and periodic loss of colour vision) Am I the only one with eye problems to have the diagnosis taken away based on that alone, because that was basically what I was told "You don't get optic neuritis with lupus".

I'm fed up now with what feels like bickering between the neuro and rheumy and it feels like I'm just an interesting case study for them. And I'm left fighting to get something, anything, that will help my symptoms particularly the complete and utter exhaustion (and that's when I get up in the morning :hehe:)

Sorry about the rant, but I needed to get it off my chest. Time now to do battle with eating dinner - preferably without spilling it down my front (I'm thinking of asking for a pelican bib for my birthday!! :lol:)

Hope you're all well as can be, and sorry again for the rant

Allie
 

·
Registered
Joined
·
376 Posts
Hi Allie,

Sorry to hear about your struggles with getting a correct diagnosis. Are they giving you any medications that might work for both SLE and MS until they "figure it out". I've known SLE to be a disease by elimination. I thought there were specific tests for MS?

I remember when I was diagnosed with SLE, they first said it wasn't because they could only agree on 3 criteria that I had, but I needed 4 for it to be considered SLE. Then I got a rheumatologist that said the 4 criteria is only if you want to be start of a study. How ludicrous is that??? So, she said you have to treat the symptoms; that I definitly had SLE and other symptoms will show up eventually. Unfornately, patients become victims of doctors who are playing this game (i.e. 4 or more criteria).

I have visions problems, but I've been blaming it on my diabetes. I was diagnosed with this in February from the predisone I've been taking for almost 3 years. I used to read to go to sleep, but I can't see by the end of the day. Even most mornings I have to increase the view on my computer to 150% so I can read the screen and I have a 20" screen. It could be Lupus too I guess, but I haven't given that any thought. I can only sympathize with you. When I was first diagnosed, it took about 2 months to get my vision back. It was so bad my husband couldn't work so he could take care of me. I do hope you have a good support system.

I wish I could be more help to you. I hope the doctors do try to treat your symptoms regardless of what disease they think you have. They should give you something so you can get some relief.

There many others in the forum that are in your position. Hopefully they can post and you can "compare notes". It does help to know you are not alone in this situation.

Hang in there (and here). We'll support you as much as we can.

Annette
 

·
Registered
Joined
·
2,404 Posts
Dear Allie, I have a friend who most definitely has Optic Neuritis and Lupus.
I would seriously suggest that if you can get to Dr. Chris Edwards at Southampton or Dr. D'Cruz in London, you go there. Either of these are very good.
I am sorry you are so fed up, many people have been through this SLE/ MS debate.
x Lola
 

·
Registered
Joined
·
931 Posts
Hi Allie,

I have lupus and APS and went through recurrent bilateral optic neuritis from 2005 until September 2007. In fact severe and persistent optic neuritis was my main symptom for about a year. So you can definitely get optic neuritis with lupus.

The neurologists and eye docs that first saw me thought I had MS too, MRIs without any plaque and spinal taps without oligoclonal antibodies (although having said that, one can get oligoclonal antibodies with cns lupus too).

Optic neuritis in lupus is sometimes also associated with something called Antiphospholipid Syndrome (APS for short) or Hughes' Syndrome (after the doctor who discovered it). APS is an autoimmune disorder, like lupus, that makes one's blood more prone to clot. Sometimes people with lupus have it, but one does not need to have lupus to have APS. You can find more info on APS on:

http://www.thelupussite.com/forum/showthread.php?t=52667

http://www.hughes-syndrome.com

Oh! Also, what tests have you had for lupus? Have you had an ANA done? What symptoms do you have, if any, other than the neuritis?

Optic neuritis in lupus is usually very responsive to meds, especially if it is unilateral (i.e. if only one of your eyes is affected), but it needs to be treated nonetheless. Are you on any meds for it? How is your vision at the moment?

Hang in there Allie :grouphug2: :grhug:

:flowery:

Zoi
 

·
Registered
Joined
·
35 Posts
that's interesting. do you know if you have any bp problems? i know that bp problems can cause blurry vision and vision loss. in fact, i'm in a similar boat. some doctors think that i have lupus and some say i don't and others say i'm borderline. however, i found your post rather interesting because i have bouts of vision lost in one or both eyes from time to time. i can always tell when i'm about to lose my vision because it gets blurry, then i feel off balanced, and then i black out for a few seconds. i don't know if this is the same thing that you are experiencing. when i've asked doctors about what might be causing this with me they always reply oh i don't know and i've never heard of that happening. i hope you find the help you need and i know that it's frustrating when your told yes then no and then yes and then maybe and then no again.
 

·
Registered
Joined
·
123 Posts
Hi Allie,

So sorry that you are being pushed from pillar to post. I often feel that I am an interesting case for Dr's as I go through the various departments. Sometimes that can be quite handy as you get extra care because they are interested in what is happening with you. Other times it makes them jumpy becuase they are not sure what is going on so don't commit to anything.

Sometimes it can help to let Dr's know that what is 'an interesting case' to them is a 'real life' to you. Explaining that you understand that they don't want to jump to an incorrect diagnoses but according to your understanding the MS tests have come back negative and the Lupus test are positive so could you go on some Lupus meds to see whether they help or do they have another plan as you would like to be able to move on with your life rather than living in this confusing and stressful position. The Dr's may say no but at least you have spelt out your position for them which can help them in caring for your needs.

I really hope you get some answers soon
K
 

·
Administrator
Joined
·
7,567 Posts
Hi Allie

I understand exactly how you feel. Optic neuritis was my first symptom that led to hospital treatment, they said I had ms and then changed their mind. I was diagnosed with lupus and hughes syndrome on Monday, still reeling from that! But, importantly I have been told that Optic neuritis cant occur in lupus but my opthamologists says it can. I have just been reading the lupus book by Dr Wallace and it mentions optic neuritis in there, so it obviosly does. Would recommend reading that book, it might help.

Take care and I hope you get answers soon.
 

·
Registered
Joined
·
4 Posts
Discussion Starter · #8 ·
Thanks!!!

Thanks for all your replies. It really helps to know that I'm not alone dealing with all this and that there are others who understand where I'm coming from and care enough to want to help - so BIG BIG THANKS to you all.

To answer a few of your questions, all my blood tests came back as they would expect for lupus (including ANA) although I was negative for APS (I got a 5 minute lecture from the rheumy about why I mustn't call it Hughes, although my brain did switch off at the time, so I can't remember why!!) I also have hypothyroidism, and despite getting the meds for that I've still got a very low pulse and blood pressure. Apparently I am also very mildly anaemic, but when I told the nurse she just laughed and said "what do they expect when they're taking so much blood for tests!!"

Most of my symptoms seem to be on the neuro side of things (I now have permanently numb hands and feet, pins and needles, tremor and the like) but I also have a horrible rash on one side of my face, which is finally clearing after almost two years, bladder problems, joint pain and swelling (but the rheumy put that down to me being double jointed) and of course the dreaded fatigue :(

I'm seeing my GP tomorrow so I'm going to really start pushing for something to help the fatigue and joint pain, I'll have to write things down tonight though because I'm absolutely hopeless unless I have several hours to get going in the morning

It's just SO frustrating all the waiting around for someone to make a decision, and being referred to as an enigma doesn't help either. I'll be doing at bit of bizarre celebrating tomorrow though - after I see the GP I have no more appointments, hospital visits, tests.... until next year :bigsmile:!! and having had appointments almost every week for the last four months it's going to be bliss!!!!

Thanks again
Allie
 

·
Registered
Joined
·
4,968 Posts
Hi Allie,

Just wondering how you made out at your GP office and how your feeling?

I hope your fairing well.:wink2:
 
1 - 9 of 9 Posts
Top