[araymond]

Hi there,

I had my first Rheumatologist appt in Dec and she said that she thought I had either Lupus or SS. When my labs came back I was within range on all tests except my -ANCA was positive and my MPO was borderline at 21.

She had told me that regardless of the labs she was 100% sure I have an auto immune disorder. I have had fatigue, extreme hairloss, malar rash, petechaie, joint pain, dry mouth, eyes and skin, other rashes, etc.

Now, over the past couple years I have also had a few episodes of my leg or arm going numb and being tingly for a week at a time. Over the past two months (in addition to the numbness) I have now developed weakness in my left arm and hand. I can't grip things or open things with it. My legs have been giving out on me and I am falling all the time. I am dizzy and I forget things constantly. I can't think of words to use or I use the wrong words. I get confused about what I was doing. I will lose my balance and trip like I have been drinking. I have been getting headaches.

My Rheumy's office told me that she was on vacation and not to worry about these symptoms. So, I called my PCP and she had me come in right away. I had an MRI done because she thought I had Multiple Sclerosis, but it was normal. She is having me see a Neurologist on the 3rd for further evaluation. I guess she said that I could still have MS without visable lesions. I think it has to do with lupus or something like that because I am also starting to lose my hair again and that is how my flares start.

My question is do any of you have these types of symptoms as well? What happened with your doctor? Did you see an Neuro? I am nervous about having to have a spinal tap.

Also, what do they do to treat these symptoms?

Thank you all!

Andrea

 

[lazylegs]

Hi Andrea,

The neurologist will run some very simple tests. They almost don't seem worth it but amazingly they let the doctor know quite a few things. I don't find any of them uncomfortable. You will probably walk, stand on one foot, stand with your eyes closed, have a pin test, get reflexes tested, some coordination tests, nothing earth shattering. The entire time the doctor will be listening to your speech patterns, watching eye and face movements, watching for tremors all without you even noticing it. In fact the first time I left thinking what a waste of time it was. Not so, it was just the baseline testing to compare all future tests too. The doctor may order additional tests including a spinal tap.

Just the thought of a spinal tap made me nervous. You see them on television with that big needle and you just know it has to hurt. That was not the case for me. The only thing I felt was a slight burn from the Linocaine for just a couple of seconds. In no time at all it was done. I was very careful to stay down as per instructions and loaded up on Mountain Dew to help keep the headache away. My back was just slightly tender for a couple of days at the site of the injection.

Your GP was right to get the testing started. In my opinion it is always better to know the cause of the symptoms so the proper treatment may be started. Good luck with your appointment.

Take care,
Lazylegs

 

[Lily]

Hi Andrea and :welcome: but I'm sorry for what has brought you here.

You don't mention pins/needles or any burning sensations in your limbs - they are both common with peripheral neuropathy, which I will go into below. In that case I'm wondering if you have been tested for Antiphosholipid Syndrome? That's something they should rule out with the headaches and the weakness, brain fog etc. Two simple blood tests is all it takes and is often treated with a daily baby aspirin unless you have a history of thrombosis.

With a normal MRI and weakness of legs and arms etc. it's also possible those particular symptoms are due to some kind of peripheral neuropathy (i.e. the nerves branching out from the brain and spinal chord) or even the muscles themselves being affected more than we usually get them affected (Myositis). Both can happen in Lupus and Sjogrens.

Mind you I'm no doc and yours will definitely have to investigate this further to establish the cause.

What meds are you taking for your Lupus? If this is found to be some kind of central nervous system or even the peripheral nervous system problem then they would normally use Prednisone to treat an acute attack and if these were persistent then they would probably try one of the steroid sparing drugs i.e. immunosuppressants. I have SLE and Sjogrens and have had similar problems and they help me tremendously.

If it is indeed something like APS then it's more easily treated with the aspirin. APS likes to mimic MS. In fact a lot of our brain problems for those that get them are not unlike an early presentation of MS, but as time goes by and more symptoms develop, more tests done, it becomes clearer.

The Neurologist should be able to sort some of it out, I hope they are familiar with the connective tissue diseases though. I think before I had any invasive procedures I would make sure the APS blood tests were done though. If you do have to have a lumbar puncture they arent that bad, I found the thought of it far worse than the actual procedure. But try and take it as it comes it may not even eventuate.

:hug:

Let us know how you get along. Do make sure you see the Rheumy as well because they should know this is happening and their receptionists (probably by the sound of them) won't pass anything on. The Neuro may not consult with the Rheumy either. So it's up to you to keep him informed. This could very well be his department anyway. I do have both but thankfully the Lupie doc calls the shots in consultation after the Neuro has seen me. I value them both

love
Lily

 

[Katharine]

Hello Andrea,

Yes, your GP was definitely right to get those things checked out and if you are having those types of symptoms it is good to be seen by a neurologist as well as your rheumy.

I have peripheral neuropathy with my lupus but thankfully it is not too severe and I just see the neurologist occasionally to keep an eye on it and make sure it is stable and not getting any worse.

I had EMG testing done as well as an MRI and all the normal tests the neuro does that Lazylegs mentioned. The MRI showed nothing of great note and, as my neuropathy seems to be remaining stable, a spinal tap was not deemed necessary.

I also have muscle weakness but we are not really sure if it is caused by the neuropathy or if it is caused by a probable mysositis overlap that I have. The main message I have from the neuro for the moment is that so long as it doesn't get worse we leave all the testing there. The most important thig was getting my lupus under control (which it pretty much is now) and keeping an eye on the rest to see that it doesn't get worse.

I hope it goes OK for you and I'm glad that you have got that appointment. Often we need a "team" of docs working together to help us, it's perfectly normal.

Katharine

 

[Jmaca]

I have muscle weakness similar to what you describe. Have you been checked for myasthenia gravis? A mild form of it can accompany an autoimmune condition. I have the antibodies for it, but have relatively mild symptoms as compared to someone with fullblown myasthenia gravis. Years ago, an MS specialist told me that MG is an "opportunistic" disease that seems to piggyback onto other autoimmunities like MS and lupus.

I'm not sure, though, that the test is run all that much by rheumatologists. Mine did it right away, but years later, I found out he had studied under a well-known muscle specialist back in his residency days.

So that may very well be another test that should be added onto the list.

 

[halfpintfl]

Hi Andrea, and welcome to this great site. All that
you described about the pins and needles, plus the extreem weakness in your legs, sounds like what I went through
when I was finally dx for Fibro, and that is an autoimmune
disease also, and is dx by a Rheumy. This isx exactly why Lupus is called ; the disease of 1,000 faces. as that is how many diseases it mimics. There are people in here that it took yrs for them to be diagnosed. Be sure to write down all your symptoms, that way you wwont forget any of them. I wish you good luck on you next appt on the 3rd.
Let us know how it went, we are all here to help and support everyone else, and that includes you. We will be
looking forward to hearing from you.:wink2: ​

 

[LolaLola]

I can only say what others have said, that you definitely need testing for sticky blood. It could well be causing some of your symptoms but is easy to treat.
Many of us, including myself and my Daughter have it in addition to Lupus.
Good Luck,
Lola x

 

[Jenkay]

HI there,

I have all the same symptoms as you and have had every scan, puncture and blood test out there, or at least it seams that way. I've been to 4 neurologists (they each keep referring me to a more specialized neurologist) but no one has been able to find anything specific.

I don't have much advice just want to let you know there are several of us in the same boat. My feeling is that over time they'll eventually figure out exactly what is going on. I was dx with SLE 2 years ago and had previous positive ANA and anticardiolipin but I still feel there is something more going on especially with the difficulties walking, rising, leg dropping but it is all a mystery for now.

Let us know if you get some specific results. Thanks for posting.

 

[araymond]

Thank you everyone for all of your responses and insight. Since my last post I have developed extreme weakness in my arms and legs, tremor in my arms/hands, and a decrease in vision as well. My cognitive problems seem to be worsening as well. It is frightening how fast this has hit me.

I saw a Neurologist yesterday and he said that aside from a few minor abnormalities, my exam was fine. He thinks that all these things are related to my autoimmune disease process. I don't have a definitive diagnosis as of yet, since I have only had one Rheumy appt. He said that he needs an exact diagnosis before moving forward. My Rheumy is the best in town and is VERY hard to get an appt. My Neuro called and made sure they worked me in! I see her in two days. He thinks it might be vasculitis due to my +ANCA, Raynaud's, history of migraines, petechaie, livedo reticularis, etc. For now, he orderd another MRI of the brain and spine (the place I went to had such a crappy magnet he said it was useless). From there we might have to have a lumbar puncture and an angiogram.

For those of you who asked, I was put on Plaquenil 400mg per day, but was extremely allergic and can't take it. I was also given a Depo-Medrol injection at my appt in Dec, but it didn't do crap. The Rheumy had me taking Relafen for the joint pain, but all that does is give me a horrible stomach ache.

I have not been tested for the APS since they didn't think I had any risk factors. I am not sure if they will test for that or not. The neuro also wants to test for Lyme disease too.

I am scared and anxious about what is to come. The Neuro won't rule out MS either until I have another MRI, but I am hoping it is just the Lupus or SS or vasculitis since those can be suppressed with medications.

How many of you have these problems? Just curious if these neurological problems are likely to continue during the course of the disease or if they go away with medications.

Thank you all again!

Andrea

 

[LolaLola]

Dear Andrea, I have had pretty big problems in the past but am reasonably well controlled apart from being a bit clumsy now.
Don't worry about a Lumbar Puncture, they are not too bad,especially if you lay flat for as long as you can afterwards.
x Lola

 

[Jenkay]

So sorry you are going through all of this. I still ditto everything you are saying and have been dealing with the same things for a couple of years. I did test low/med positive for anticardiolipin but with meds those levels have gone down.

Just because a test is not positive at the moment doesn't mean it won't be in the future so it is important to have them run test over and over, at least that is what my rheumy says. It may help you get a dx.

The neuros I've seen say that all my neuro issues and "because of your lupus" and in the end I haven't really received a better answer than that. It is very frustrating and I hope that over time something more concrete will be established.

For now just know that you are not alone.

 

[Clare.T]

Hello Andrea

I am sorry you are going through so much- it must be frightening but at least they seem to be getting on with the investigations pretty fast.

You should know that testing for anti phospholipid antibodies is routine these days in any reputable practice, certainly as part of initial testing and in many practices as part of annual check ups whether or not there have been any incidents typically associated with it such as frequent miscarriages or thrombosis. It can present with symptoms very like those of MS and Dr Hughes in London has said that he thinks as much as one third of those diagnosed with MS could in fact have APS.

In your place I would insist on the two relevant tests being done, that is, the lupus anticoagulant ( various clotting tests) and anti cardiolipins. Often they also do anti beta2 glycoproteins which can indicate if positive results are due to autoimmune disease as opposed to infectious diseases like Lyme

It strikes me as extraordinary that they haven't

........ tested for the APS since they didn't think I had any risk factors.

I don't even understand what they mean by "risk factors". The livedo is often associated with it. It should at least be investigated along with the MRI's and lumbar punctures !

It is possible maybe even fairly common to have an SLE/ Sjogren's overlap and both of course can be accompanied by vasculitis.

There is an alternative to Plaquenil called Quinacrine which often proves highly acceptable to people who can't take Plaquenil because it is chemically different enough. There are some people who can't take any antimalarials or have to be very careful with them but, apart from those who have a certain enzyme deficiency, I should have thought it was worth trying the Quinacrine as I dont think they know why some people react as they do to the different anti malarials so they can't predict.

I hope you get some answers very soon- please keep in touch and let us know how you get on.

Good Luck

Clare

 

[Lily]

Hi Andrea,

I'm glad the Neuro was able to get you in to see the Rheumy so quickly

Like the others have said I still think the tests for clotting antibodies should be done. Lots of people don't know they have them unless they are tested for them and as I said in my previous post I would insist upon them before undergoing the lumbar puncture etc. If it is APS related and it could very well be then the course of action as far as meds go is very clear cut. It is reknown for mimicking MS.

I don't know how bad your headaches are, if they are the worst headache of your life and extremely alarming then yes, I would consider they could be caused by a type of vasculitis and as you say you do have a positive ANCA. Certainly some of your other symptoms are familiar to me like the falling down etc. and I have Central Nervous System Vasculitis associated with my Lupus/Sjogrens diagnosis. I was also having seizures. It was an MRA that finally confirmed Vasculitis in my brain by it's appearance. That's basically an MRI with Gadolinium (a contrast medium).

The good news is that now I am on Immunosuppressants the Vasculitis is very well controlled, I have periodic MRI's/MRA's and there are no further lesions on my brain and my symptoms have settled remarkably well. It didnt happen overnight, what with fiddling with doses etc. but I did get it sorted during a 12 month period. My main problems now are if I go out in the sun or don't rest enough then it reminds me it's still there, but not to the extent it was, so I just make sure I am sensible.

Clare is right about the Quinicrine, it's really worth giving that a shot. It's often a combination of drugs that helps control our diseases. Not just one. I was already on the Plaquenil when I got the Vasculitis, so we just added the Immunosuppressant to give more impact to my treatment.

As for the Depo Medrol injection you received then all I can say is that we all react differently in dosages/methods of administration which will help us etc. For my more serious organ related problems I've usually had v high doses of Prednisone via an IV given in hospital over a couple of days. I have had injections at other times and they have been helpful for Bursitis pain etc. but they are not used for lung/heart/brain problems. Many people have to take Prednisone orally at quite high doses for a few months until their other meds kick in properly or when they have an acute presentation (which I would call your latest episodes). This helps get it under control more quickly.

Good luck and do let us know how you get along at the Rheumies.

love
Lily

 

[acard]

Hi Andrea,
Welcome!!! I am going through something similar. I was hospitalized for seizures and while in there I lost strength in my left side and I had issues with my speech. The bad news for me is they don't have answer. By the way a spinal tap is not as bad as it sounds. I too was very scared, but it truly was okay. I was sore for a week, but I just followed the after spinal tap directions and it was okay.
This can be scary and I do understand that, but the best thing is just to keep your drs informed and I would recommend writing down all your symptoms and just keep track of everything.
Good Luck!!!!!


Hugs,
Becca

 

[JudifJ]

Hi Andrea

Sorry things are happening so fast for you. I have had neuro symptoms like yours and it is probably due to vasculitis in my case (not dxd yet). I have had the whole gamut of tests for MS and while I have a spotty brain the last neuro seemed to think it wasn't MS. My bloods are starting to turn positive so I think that lupus and/or APS is the culprit. I have circulatory problems and positive lupus anticoagulant so I might have small clots doing things in my brain!!!

Let us know how you get on at your next appointment.

Thinking of you.

Love Judi xx

 

[araymond]

Okay ladies, now I am very confused and frustrated. :sad: I had my appt with the Rheumy (only my second appt) and it was worthless. She basically dismissed my neurological symptoms and still didn't have a diagnosis for me. All she said was that I have a collagen vascular disease. I asked if she thought the neuro problems were related to this and she said 'they may or may not be'. Okay, well thanks for that great peice of insight.

Anyway, she said that because I didn't have any major organ involvement I didn't need any powerful medications. She said she won't bother giving me the steroid injection again since it didn't help much last time. She said she could give me the other drug like Plaquenil (starts with a Q), but that it turns the skin very yellow and since I am really fair skinned I would look funny.

Her only offer of help was to try and find a pharmacist that will break down the Plaquenil to very small dosages like 10mg, 20mg, and so forth and to try and desensitize me to the drug.

What the heck? The neuro said 'there is definitely something neurological going on' and that the Rheumy wanted to see me right away to start treatment. Then, the Rheumy is basically dismissing me (and my 15 huge bruises from falling all the time) and all my numerous symptoms telling me the Neuro said I had no major neurological deficits.

She said it would be a good idea to go ahead and get a good quality MRI, but it was no hurry. She said that CNS vasculitis would show up on any MRI, even a poor quality one like I had. Interestingly enough, they could not visualize the left vertebral artery on my MRI. They included a differential diagnosis of occlusion due to vasculitis, but said it was highly unlikely due to my age.

What do you ladies think? Should I go ahead and have the new MRI on Tuesday? Should I just ignore the symptoms and see what happens from here? I am tempted to find a new Rheumy after that appt. I left the office in tears feeling like I was stupid for even bothering.

Andrea

 

[Lily]

Hi Andrea,

Oh I hate appointments like that (((((((((Andrea))))))))) they leave you in limbo, confused and frustrated!

I think that I would still try the Quinicrine that Clare mentioned. In her case from memory it hasnt been too much of a problem with yellowing of the skin I don't think. I guess it would depend on your skin colouring to start with and remember not everyone reacts as typical to these drugs, we are all different. That would be the first step in treating some of your symptoms anyway. But I guess it's really up to you whether your symptoms outweigh that possible side effect. It's something we all have to weigh up with most of our drugs. Can it improve my quality of life enough that it's worth xyz problem? Is my quality of life so bad that I would give it a try? These are the questions that only you can answer.

Would your GP or Neuro be able to run the clotting tests Anti-Cardiolipin and the Lupus Anticoagulant for you. You can't assume the Rheumy has run them and they may be important in sorting out these neuro probs you have.

I would still go ahead and have a second MRI, especially after what your Neuro said. It took 4 or 5 MRI's before my Vasculitis showed up on them. It had to be caught in the act so to speak. I did have lesions there from previous assaults so they knew something was going on. Like you on that last MRI they found that my left or right (can't remember) communicating posterior artery was shot to pieces, no evidence of it!!......... yet it was present on previous MRI's. The vasculitis had caused it.

sending hugs,

love
Lily

 

[Joandublin]

Hi Andrea

Let me start by saying that I dont have any experience of CNS Lupus :hug:.

However I do think that you are falling between several stools. If I were in your shoes I would go ahead and have the MRI on Tuesday anyway but I would also be keeping an eye out for another Rheumatologist. I wouldnt be happy with a rheumatologist who referred to potential treatment as 'powerful' medications.As for her comments on 'looking funny'...enough said. Patronising in the extreme....

Collagen Vascular diseases include SLE, Rheumatoid Arthritis, and others. See link below:

http://www.nlm.nih.gov/medlineplus/ency/article/001223.htm

I have recently developed a bit of a yard-stick measurement around consultant appointments and if someone leaves an appointment in tears, then this measurement drops to zero

Health care and treatment is a holistic process - not only do you need to know that your specialist is competent but you also need to know that they can communicate this to you.

Keep on pushing Andrea. Lily has given you some direction with regards to blood tests. Insist on them.

Please keep in touch and let us know how you are doing

Luv n stuff
Joan:rose:

 

[araymond]

Thank you both (and everyone else) for your advice. I have decided to do the MRI tomorrow afternoon and see what happens. My doctor is supposed to call today (the Rheumatologist) and tell me whether or not the pharmacist can do the low doses of Plaquenil. I think I will ask her if I can give the other drug Quinicrine a try. My hair has started falling out badly again and my joint pain and severe fatigue has returned.

I was looking back at my records, (I keep copies of all my results and such) and I was tested a year ago for the Lupus Anticoagulant and it was normal. I have always been ANA negative, but test positive for P-ANCA. I was also anti-Ro/SSA negative and anti-DNA negative too. My RF is always negative and my ESR has been higher than normal on one out of three tests. My platelets are within normal range, but right on the verge of being low and my WBC, are usually right on the very last tip of normal (like 10.0 and the range is 10.5).

Anyway, I have also now developed what feels like a blood clot in my arm. It appeared out of nowhere yesterday as a hard lump that is movable near my elbow on a vein. I did not hit or injure myself in that area. Today is is red and sore and feels hot. I didn't know you could get blood clots in your arms or where they are right up under the skin. I am going to call my regular doctor today to ask her what she thinks.

Thank you again for your kind words and support. I will let you know what I find out on the MRI. More than anything I just want to feel better and have more energy. I have four small children (ages 7 months, 2 years, 3 years, 5 years) and I am going to school to be a nurse. I have so much I want to do in life, yet no energy to do so. Plus, it seems like my husband and most everyone else thinks I am a hypocondriac since most of my symptoms are not visable on the outside. I am sick of trying to explain why I am so tired and sore all the time.

Thanks again,

Andrea

 

[mysharonna]

((Andrea))

Sorry you are going through such a scary time. It seems like the neuro is going to stay on top of things.

Did your doctors offer you another option since you are allergic to the plaquenil? I too had a bad reaction to it. There are other medications you can try in place of it. Maybe a course of Prednisone can start settling down some of your symptoms.

They can't just leave you hanging there with no medicinal intervention and all of these symptoms!

I do hope you get some answers and some relief soon. Try and rest as best you can and keep us posted.

Sharon

OOPS!!!! Sorry...I just realized I missed an entire page of additional posts, sorry if my answers were redundant! I can personally attest to the Quinacrine, as I have used it for the last 5 or 6 years with very good results and no side effects. I am extremely fair..red hair, freckles and pale skin and I only noticed a slight yellowing at a slightly higher dose..100mg per day. In the long run a little yellow is a small price to pay for feeling so much better..and honestly, no one noticed but me! I think it was shameful for your doctor to put down a potential treatment instead of embracing it! ..time to look for a new rheumy maybe?

Let us know what happens with your MRI