Topic of the discussion
Posted on 5/22/19 8:31 PM
My sister a Id Ihave had very similar symptoms. Mine started over a year ago. Recently my sister has come across information and doctor's who think she may have lupus. I am wondering if anyone with lupus has experience similar symptoms as we have and if there is a really chance that I may have it.
We were first allert to there being a problem when I started having, what we think, is non-epaleptic seizure's. Before that I had experienced joint issues and stuggled with spells of dizziness. After the seizure showed up ,things progressed into nauseousness, headaches, clumsieness, mood swings, joint Pain, changes in vision, extreme fatigue (sometimes so bad I can't stand), cognitive imparment, dizziness, and the seizure's. All of my symptoms can come and go quite quickly. I often have a bad week or so and then things will be good for a while before flaring back up.
I am skeptical of it being lupus because I have not experienced any rashes and from what I can tell no fevers either. (there have been times where I felt sick enough i had thought I had a fever and it turned out i didn't)
What do you all think? Has anyone else experience something like this? It can be incredibly diblitating. Should seriously consider lupus as something to check up on?
Beginning of the discussion - 5/23/19Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/lupus/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020
Posted on 5/23/19 12:19 AM
Definitely do what needs be to rule it out!
Posted on 5/23/19 8:49 PM
Thank you for responding naders6681. Do you have lupus yourself...if you don't mind me asking? What was your experience with symptoms showing up and then working with doctors to figure out what was going on?
There was a good stretch of time that I was being treated as an anxiety pecient before I had two therapist tell me I didn't have anxiety and I should look into my body further. At this point the only doctor I have gotten to consider anything other then anxiety has been an alternative medicine doctor who is currently working with me through a supplement plan.
Posted on 5/24/19 3:05 AM
My first symptom was the classic butterfly rash on my cheek and across the bridge of my nose. I was in denial initially because my sister had just been diagnosed with lupus the year before so I thought it couldn't be! 2 weeks later I went to my doctor and told him I think I have what my sister has and he referred me to a rheumatologist where I had blood work done and it was confirmed. Their initial treatment was steroids and after 2 to 3 months I started having joint pain and they put me on cellcept then plaquenil. I had a major flare up in 2013 which nearly took my life. As a result of the damage the lupus did ( it damaged my kidneys) I am now on dialysis the 7th of may made a year since I am a hemodialysis patient and I am working now though I have been in and out and I'm happy
Posted on 5/26/19 6:22 PM
Oh, I'm sorry to hear it got so bad, sounds like things are a bit better now though, I"m glad to hear your able to work (I know I fear that day to come when I won't) and that your doing well emotional. thank you for sharing your experience with me.
Posted on 6/4/19 6:21 PM
I have started to have new pain. My right leg shots pain when I stand for more than 5 mins. Then I set down and my left leg starts hurting. Don't know what I am going to do. My pain pills are not helping anymore. Does anyone have any advise for me?
Posted on 6/4/19 9:14 PM
Hey friends, and welcome Karina. I think you will feel right at home here.😊
I have suffered with Lupus for 28 years and I am still having new issues develop unfortunately.
My message to anyone who is ill is don't give up and do it your way meaning love yourself enough to advicate for the right treatment for you.
Karina as I read your symptoms it was like a check list that went off in my head. Discord lupus is the skin part of Lupus. Systemic is the internal Lupus, I have both. You can have one without the other.
I have had 2 strokes, a hole in my heart repaired, broke my back and suffer seizures. Like you I get dizzy and at times can't get out of bed for days except to do what I have to.
I have a wheelchair for when I can't walk. A walker to use as I need it for the dissiness and for falling over (I'm old LOL).
I can't tell you what you have but I can tell you what my symptoms are and then maybe you can go back to the rhematalogist and request blood work to find out more. You need to know what is going on with your body.
I struggle with my vision, and speech sometimes but that I believe it's from anxiety. And could be stroke related.
What meds are you currently taking and for what?
What state do you live in.
My recommendation is to see a rhematalogist. Track your symptoms so when you go to see him you can explain in detail.
This is a journey we are all on together. I really hope that you are not diagnosed with any kind of autoimmune disease but if you are you have found a home where you can learn from others as well as getting expert advice on pertinent topic's that pertain to us individually.
I hope I was helpful and just wanted to say If you need someone to talk to or vent to, you can text me... You can do this. Read more on this site about Systemic lupus, remember knowledge is power.
God bless 🙏
Posted on 6/5/19 8:06 PM
Beckieisue, I just wanted to acknowledge your question. I am so sorry to hear your experiencing pain like that. I unfortunately don't have much advice to offer yet as I am just starting to try and figure this stuff all out. It does sound kind of like nerve pain though? Is there a source its shooting from that you can tell? Is it a sharp pain or a dull ache?
Naturalremedygurl- Thank you so much for sharing that with me! It really helped me to know someone else has experienced something like this. Currently I am not on any actual medication for my symptoms, I very rarely even take pain meds (I don't really like to endless my pain is keeping me from doing something). I Also have had a hard time getting any doctors to work with me. Most, at this point, wrote me off as having anxiety (because of my Non epileptic seizures).
After having two counselors tell me to personally that they didn't not think I was dealing with anxiety, I reached out to a alternative medical doctor. She has taken me seriously and it has been such a breath of fresh air. She's been working with me now for 4 to 5 months using supplements. Her focus is on getting my gut back in order which she believes will fix all my symptoms. So far we have not seen any change. Things still seem to be getting progressively worse.
Since the potential of an autoimmune disease has been suggested I have become skeptical that fixing my gut with supplements wont be enough, I still think it could be helpful and is worth continuing to work on, but I am worried that I may need more then that. I guess I have been feeling that an active disease like Lupus should be being monitored so nothing that needs immediate attention will go on treated. And if I needed an actual medication involved, over just supplements, then I would have someone ready to implement that.
I have been trying to figure out how to move forward in getting connected with a rhematalogist. I don't have a primary doctor as of right now, and all of the other ones I've seen about this before, I didn't like. Can I contact a rhematalogist on my own and have them get me in or do I need a referral?
Posted on 6/10/19 3:36 PM
Hello, Im new to this group.. I currently have RA, and fibro.. Had labs done the other day and they came back as positive ANA and titre is 1:640, homogeneous pattern. Does anyone know what this could indicate? I sit back and think over the last 3 or 4 years i always thought i got into poison summac when i got outside in the sun it was like blisters or a rash on both arms that itched and burned. Hurt terribly bad have trouble walking. Im always a bundle of nerves with anxiety.. Thank You, Kristen
Posted on 6/11/19 12:33 AM
You don’t need to rule it out but I would also suggest a neurologist due to the seizures . Sounds a little like MS . I wish you the best both are hard to diagnose . But MRI should be done and keep a medical journal . Blessing to you