Here are a couple of suggestions. Other people will have others. If the docs are doing blood work have them check you for a immune deficiency disease by checking your IGG,IGA,IGM,and IGE levels. If these are not normal then maybe you have an immune deficiency. For more testing ideas and other immune information go to the primaryimmune.org The people at the Immune Deficiency Foundation(IDF) are great! They can also suggest testing and send you free information. At this point very few docs are aware of immune deficiency but keep advocating for yourself!
It makes sense to also have the docs test your vitamin D3 level. D3 deficiency is common. You must supplement. You can't eat enough to get the levels you need. My PCP has me on 10,000 IU of D3 a day. I am tested 2 times a year to make sure I have the right level. It is cheap to get vitamin D at Costco, Walmart, etc. More good info on D at vitamindcouncil.org Your blood level of D3 should be between 50 and 70mgl. D helps the immune system work correctly and not enough D causes many, many problems. There might not be one answer for your symptoms but more than one.
Lots of people have great ideas here. Keep looking for answers!
elbamom
Thanks, I am truly grateful for all the help I can get. I am gonna have to look into the immune deficiency, although wouldn't this mean I would get sick easier. I don't get sick often, and when I do I don't feel as bad as I should. I never get fever. But I will look further into this.
Anything helps, becuase at this point my family is just worried and fearing what might happen to me. Answers would bring a bit of peace. As for D deficiency that probably is a possibility. I was told Maginiesuim deficiency is another possibility. I truly need to figure out what all my past Nero ruled out. Well thank you for everything, and God Bless You.
If you go to the IDF website primaryimmune.org, then go to publications they have a diagnostic book that recommends different immune tests for certain symptoms. It is free, they will mail it to you or you can look at it on line.
This should give your doc and you some ideas to follow.
Hope this helps.
elbamom
Thanks I will be checking that out. I have an appt Thursday. I am just praying for answers. Anything I can learn to help me know what to ask is appreciated.
Actually, your symptoms sound more like lupus. And lupus can affect even the central nervous system as well as joints. Did they do an ANA, sed, CRP to check for inflammation? What made them think it was something autoimmune?
To be honest I didn't really understand what all was going on at first. I was really scared and just wanting the tingling to stop, and the dizzy spells to go away. But when my first primary doctor did some blood work she said it lead her to believe it was autoimmune. My mom was with me through my journey, and had gotten copies of the bloodwork but lost them.
I really need to look into Lupus, another person said that too. I have checked it a lil and it says something about a rash. I use to get this bad rash on my forearm. They got it checked and said it was ecema, but I didn't have the rash at the time as bad as I get it. It was only on my hand.
I don't know what to think now. I finally got my doctor appt for Thursday, but now my sxs are not acting up as much. The tingling is still slightly there, and pain sometimes, but not like the last two, three weeks. Even the swelling has gone down a bit, you can barely tell they are swollen.
Anyways, in response I don't know exactly what other test they did. I just remember lots and lots of bloodwork, the MRI, the LP, and nerve test. Maybe I should see what test they do to check for lupus.
Well thanks for all your support. I am truly grateful for all the help I can get. May God bless you, and your day.
Kimberly
I just double check it was a positive ANA that lead to my primary doctor thinking autoimmune. I am gonna ask my mom to really look for that first blood work, cause maybe it will give me some answers. Also, my mom said she looked up lupus after I told her the other day. Aniema, many with lupus have. I have been anemic since I was very little, but my birthcontrol leveled it out for the most part. Like I said thanks for the help.
Today as some may know I went to see my primary care doctor for the first time this second go around in hopes of being dxs. Well, it went just as I expected for the most part. I got told I need to see a Nero, and I had blood drawn. She wanted to test my b12, and do another ANA. The only thing different was I was told that she wanted to take a second look at rheumatoid related issues due to my joint pain.
So, soon I will have the results to my bloodwork, and tomorrow I call the program I am on to see about a Nero. I just pray that getting to a Nero won't be hard. I also will be looking up rheumatoid related disorders, so I know a little more about them. Thanks everyone for your support while I am stuck in limboland. May god bless you all.
Kimberly