New here - questions

[laker]

Hi,
As I post this I am hoping that some of you can help me and I can help you, at least by sympathizing! I am wondering if anyone has gone through a similiar pattern of symptoms. I have had widespread neurological problems (parathsesia and numbness) for a year but all neurological tests are normal. I had given up when one neuro. rudely told me he thought I had no neuro problems and there was nothing wrong with me. My family dr. urged me to keep seeking because she could see my health was declining. I was recently sent to a rheumatologist when I developed arthralgia in most of my small joints and muscle pain. Fatique has been bad for a long time. I could not even go for walks anymore. My sed rate was very high, and I have significant weakness also right side reflexes are almost non-existent. The rheum. thinks it may be lupus. I am waiting for test results and in the meantime was put on a steroid burst which has relieved all symptoms and immediately caused me to loose 4 lbs. style_emoticons/<#EMO_DIR#>/smile.gif Anyone else here have neuro problems? I did not think they were typical of lupus. I have waited 4 months to go to U of Michigan Neuromuscular Clinic and now wonder if it even makes sense. Lots of autoimmune disease in my family, including one child. Any suggestions?
Hmmm... that was sure a lot about me.....I will start checking out some of the other posts so I can get to know you.
Take care,
Laker

[Lily]

Hi laker and welcome,

You have done the right thing seeing a Rheumy and I'm glad your GP is on your side and trying to help you get answers. You will find a lot of info here about diagnosis and tests to help in diagnosis.

Lupus can affect the CNS and here is a link to a post pinned to the top of the symptoms forum :

http://www.thelupussite.com/forum/index.php?showtopic=20028

There are neuro's and neuro's I'm afraid, some know very little about Lupus. Some miss things if the right testing is not done - what investigations did you have for your Neuro sx?

Good luck with your test results and let us know how you get along with the Rheumy.

love
Lily

[laker]

Thank you Lily. I was diagnosed with polyneuropathy even though there was no testing to support it. I was told my nerves are "very unhealthy" but that the cause was not known and my tests were "within range". I had emg, NCV, eeg, CT, MRI, carotid doppler and lots of bloodwork, lumbar puncture. Seems like there can't be anything else to do! At the time my gp said that perhaps it needed time to evolve to be able to diagnose. Hopefully we are at that point now.
Laker

[Clare.T]

Welcome to the forum Laker ! Make sure you have been tested for antiphospholipids, that's the so- called "lupus anticoagulant" tests, (various clotting tests) and anti cardiolipins. Results could indicate a blood clotting condition ( APS) with a very wide variety of possible neuro symptoms.

It might seem silly to mention it but, just in case it has been overlooked, check out B12, thyroid and diabetes

Good Luck

Clare

[laker]

Hi Clare,
I know thyroid and B12 have been checked. I was diagnosed with Hashimotos thyroiditis when I was 20. I am going to write down the others you mentioned to verify they were checked when I go in for my follow-up. I know my rheum. said she felt it was most likely lupus so it seems like they would have been done - but then I was amazed that after extensive testing in the last year no one had done sed rate. or ANA- especially with so much autoimmune disease in my family. I am having a lot of trouble with my speech lately and mixing up words which is really bothering me. Also for a whole month thought it was year 2003. And this spring could not remember whether it was spring or fall. What a relief when the leaves came out on the trees. I was pretty scared by that one.
Take care,
Laker

[Jabez]

Hi Laker, fellow Michigander here. I am a Lupus Daughter and as i am getting older have been coming out of denial regarding alot of health issues i am experiencing. I am uninsured so i am 'undiagnosed' as of yet.

You spoke of neurological disorders. I have suffered from chronic depression for over 20 years. I remeber prior to my mother getting diagnosed she was sent to a psychiatrist. In my net studies i was suprised to find that depression is a symptom of lupus and also the precurser to a flare-up. last year i had a major depression reoccurance after 3 years of not even being on meds.

I have been plagued with 'False Positives' in testing my entire life. Especially thyroid. I have also had numerous autoimmune issues such as chronic endometriosis and allergies. All herbal supliments make me itch, as well as many medications.

Anyway, just wanted to complete my second post. The rain is coming and i am feeling it! lol

God Bless,
Jabez

[mandy_au]

I am not yet dxd, yet I can relate to your symtoms well, do you by any chance get a "battery type" tingling in your head and or face, sometimes very painfull, or a plastisine type feeling like your cheeks are heavy and are going to slide off your face? ( i have asked friends at times like that if there's any noticable difference, and apparently swelling has been present to small degrees ) I've also experienced what feels like nerves twitching over my brain ... anyways thats enough bout me lol, dont know if it was any help to you in anyways?

It's great to hear you have a suportive Doc & Rheume, good luck with your test results, I hope they bring you some piece of mind,

Take care & well wishes,
Mandy :foryou:

[laker]

Hello Mandy and Jabez,
I'm sorry it has taken me so long to reply, I have been away. My neuro problems have been tingling and numbness. I have lost feeling in my left foot and am losing some in my right hand. i went to U of M and they said the neropathy is from an autoimmune disease and now are trying to figure out which one. I have not had any depression but have developed an odd sensation which I find hard to describe in my head. I also have what I think of as a "mental stutter" when I lose words or cannot say words or, sometimes say a word with the similiar sound to the word I want. That is very frustrating and embarrassing. Hope you are both well. I am just hanging out waiting for my test results and to go in for a nerve biopsy. In the meantime I am feeling much better which is great!
Laker