HealingWell
Search Close Search
☰

Lupus?MS?Nothing?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/8/2009 8:39 AM (GMT 0)
Hi there,

I have not been on this site for a long time.  A few years ago I used to visit the MS board......but now I'm just very unsure as to what's going on with me....so I'm back!

Hoping for some advice from people who are experiencing these things....and yes I know that nothing substitutes a medical opinion etc...just wanted real human thoughts....?????

Symptoms: migraines, numbness, pins and needles, visual disturbance, clumbsiness with fine motor stuff, twitches, bladder issues....always busting....take ages to actually urinate, right leg aches when I'm tired or stressed............

Tests: just one questionable lesion on MRI, my Visual Evoked potential test suggested left optic nerve damage, normal spinal tap, all bloods etc normal

Family history: Mum and maternal aunty have lupus.  Epilepsy, brain tumour in family.

Not really sure what I'm asking......doctors have so far been investigating MS as most likely cause of symptoms.  Wondering how much of this if any fits with lupus??????????

Thanks for your time

KAS

Posted 3/8/2009 2:09 PM (GMT 0)
Hey there Kas! I don't have any answers for you...I am sure someone will be on here shortly that will be able to give you some adive. Just wanted to welcome you back and hope you can get things figured out!
Posted 3/8/2009 3:28 PM (GMT 0)

Hi KAS,

Did you think you were going to escape us over on the MS board?  Please know you are in my prayers.  You have been in limbo for a long time and I can "hear" your frustration.  I am so sorry.  It can take years for these things to get diagnosed.  Unfortunately, with your medical situation the way it is, it appears your doctors have you on a wait and watch program.  You must feel very helpless.  I am sorry you haven't received the answers you deserve.  Hang in there girl! 

We miss you over at MS.  Come chat with on a "monday afternoon" real soon.

Posted 3/8/2009 3:56 PM (GMT 0)
Just wanted to say I know exactly how you feel. I've been ill off and on for years now, but particularly ill for the last year. Lots of random stuff I thought which didn't seem to connect up - headaches, dizziness, rashes, allergies, high colour in my face and neck (sometimes I go bright red, for no reason and my body temperature is normal but I feel like I have a fever), anaemia, asthma, numb hands. I woke up on day in July with numb hands, and my GP finally referred me to hospital. I saw the consultant 3 times and he just kept doing blood tests and sent me for a nerve conduction study. The NCS is normal, but ANA is positive in my blood. So then he sent me back to my GP, because at the time the only significant clinical symptom was the numb hands. My GP then referred me to a rheumatologist. In the time I have waited I have now developed other symptoms - pins and needles in my neck and feet and a constant headache that doesn't respond to pain killers.

This whole referal process has taken since July 2008, and I finally get to see a rheumatologist on Thursday this week. That's 8 months of waiting around, 8 months of worrying, feeling unwell and not knowing what's wrong, which is the hardest thing in the world to deal with. Neither my GP or my consultant at the hospital explained too much about the tests they were running or the symptoms I was having so I've been feeling very isolated and upset. Last week I found out there was a new GP in my practice so I made an appointment to see him and ask him about what was going on, as I don't really like my GP - I must change sometime. I also went to see our Occupational Health Nurse to see if she could advise me. They have both confirmed that investigations are being made to identify if I have some sort of autoimmune disorder, and that the diagnosis process can take some time - particularly when presented with a patient like me who has few concurrent clinical signs - however that has now changed and I'm hoping to get much further along with a diagnosis when I see the rheumy.

Post Edited (alim0nkey) : 3/8/2009 10:00:26 AM (GMT-6)

Posted 3/8/2009 4:20 PM (GMT 0)
KAS,

None of us are doctors but your brief description of symptoms suggests that you have something neurological like MS.  One of the first indicators of MS are vision problems.  My son had some problems and my ex has MS in her family...brother and 1st cousin, so there was a concern.  He went to a neuro optical specialist and they determined it was not MS.  Symptoms have cleared up and no others the past 2 years.

I assume you are seeing a neurologist.

Hope you can get some answers.

Bill

Posted 3/8/2009 4:33 PM (GMT 0)
Hi KAS,

 

I agree with Bill.  It sounds neurological. MS is autoimmune, just like Lupus is, so the symptoms are going to be almost identical.

 

I'm sure you've already done this, and I'm probably stating the very blatant obvious, but an MRI of your brain will show specific lessions if you have MS.  You can also have lessions with Lupus, but they look different.

 

Have you seen a rheumatologist about the Lupus possibility. Interesting that your mum and aunty have Lupus. That's a big key.  However, what it can also mean is that you are more suseptable to acquiring any type of autoimmune disease.

 

Check out www.lupus.org. It will give you some good information as well as the 11 criteria needed for a Lupus diagnosis. You need at least 4 of the criteria.

 

Good luck and let us know how you're making out.

 

Ginny

Posted 3/8/2009 5:29 PM (GMT 0)
Kas, I'm new here as of yesterday. I do have MS but was asking questions about Lupus. I feel like I may be heading in that direction. So  I don't really belong here.

Of course I'm no doctor but it sure sounds like you have a lot of MS symptoms going on. It took me years to get my diagnosis, but what I didn't do was give up. I switched neuro's 4 times. I have been on disability since 2003 and I finally got a great MS specialists  who is helping me. I take Copaxone injections every day and lots of other medication to help with the symptoms.

Please please hang in there and find a doctor who believes in you and your symptoms and doesn't only go by the test.

Hope you get help soon.

Hugs

Lynn 

Posted 3/9/2009 9:26 AM (GMT 0)
Hello KAS

I'd like to suggest you get tested for antiphospholipid antibodies. The relevant tests are the lupus anticoagulant and for anti cardiolipins, both tested together twice at an interval of at least 6-8 weeks because either can be negative at any given time. These antibodies can cause MS like symptoms & testing for them is part of a good lupus work up these days but not so likely in a neuro work up. I have read that an MS specialist is necessary and a lupus literate rheumy to make sure the diagnoses are correct. It is rare to have MS and lupus together but fairly common to have lupus and APS ( antiphospholipid syndrome) together. These antibodies can count towards a lupus diagnosis assuming there are enough other indications even when ANA is negative. Antiphospholipid syndrome isn't always associated with lupus

Perfectly healthy people can have a raised ANA and it is not a specific test anyway.

Good Luck
BB
✚ New Topic ✚ Reply