A bless day to all. First off I want to start by saying thank you to anyone who can give me more information. I am 28 yr old female who 4 yrs ago developed a severe headache that lasted a week, then started to have dizzy spells for a week, and finally felt this tingling sensation in my right leg arm and face. That scared me info to want to go get help. I don't have insurance so I went to this clinic. There after some bloodwork it was decided that I had an autoimmune disorder. But the clinic didn't have access to Specialist or X-rays. So I got on this medical program for one year. During that year fibro was ruled out, and b12. I had an MRI that showed one lesion that may have been cuase of the nonstop tingling in my right leg. I had an LP but nothing was shown there. I had my nerves tested and nothing there. I had a lot of bloodwork, but since I was just worried and unsure what to think, I didn't ask any questions really. My Nero told me suspect MS, but that it takes time to dxs.
The year ended and I was dropped from the health program. But today I begin my journey toward a dxs agian. I am back on the program maybe for a yr, but at least it's help for a bit. The thing is I want to know what I should be asking this time around. Also, what I should be looking out for.
Here is a bit more background to further give everyone an idea of what I am going through. First off I have had migraines since I took my first steps. I never have had a true fever. Nothing above 89.9, even when I had the chicken pox, the flu, mono, and the many sinus infections. About 5 yrs ago I found a cyst behind my right ear pop up but it was nothing. I also have a high tolerance for pain, so when i am in pain it most likely is severe. My mom says when I was extremely young I had blood in my urine but nothing came of it. Cancer and mental issues run in my family but nothing else. Although one of my cousins have Crohn's disease, and another is going through what I am(no dxs).
Recently my feet feel stiff, my hands tingle, I get sharp pain in my shoulders that only last a second. Right above my wrists are swollen a lil, and I feel so tired. My knees have been in pain to and at times feel stiff or pop. I also have had issues with my stomach I feel pressure in the lower right abdomen at night sometimes. This cuases me to feel like I constantly need to pee. I also get stabbing pains in different areas of my stomache. My dizzy spells, headaches, and the tingling sensation are still around. The tingling has gotten more persistent in both my legs now and my whole face.
I know this was a lot of info, but I just want to be armed and ready to help find a dxs in this year. So if you feel you might be able to tell me what autoimmune disorders to be looking into, or some questions I need to ask I would be grateful. God bless you all.
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!
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.
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.
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.
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