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Can someone please help me? I'm lost...


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Old 05-18-2017, 05:16 PM   #1
Rockstrmum
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Can someone please help me? I'm lost...

Hi. I'm reaching out because at this point, I am desperate for answers. In 2010, I was diagnosed with celiac disease. I was doing well until October 2016 and have had ongoing undiagnosed issues since then.

October 2016 - Bladder went nuts. No infection and doc said it was nothing to worry about. He did a scope and put a chemical in my bladder that I had to hold in for about 15 minutes. He was terrible.
December 2016 - started feeling sharp shooting pains in my thoracic area and doc sent me for diagnostic mammogram. Nothing there.
January 2017 - My skin started feeling like it was on FIRE. No fever. Sharp nerve pains in my feet and my joints began to ache, the worst in my feet and hands. Numbness in my face and fingers.
February 2017 - all of the symptoms continued. Fatigue became nearly intolerable. Extreme muscle weakness, especially in my arms.
March 2017 - doc sent me to Neuro. Neuro did EMG, nothing there. Ordered MRI. Headaches began, and my eyes started feeling heavy. All other symptoms continued.
April 2017 - MRI showed "few scattered non-Specific Foci of increased signal in both hemispheres." Neuro said he was done. Nothing there. Primary doc consulted with him and they decided to do lumbar puncture.
May 2017 - symptoms continuing. Neuro says CSF results normal. I'm NOT getting better.

My bloodwork has shown low Vitamin D and B12, doc has me on supplements. Primary prescribed Trazodone to try and help me get sleep, which has helped me sleep but I am still so weak and fatigued.

ANA: positive at 1:40
Gamma globulin: low - lab noted hypogammaglobulinemia
RA Latex: <10
HGB: high 15.7
Immunoglobulin G, quant, serum: Low

I've been tested for Lyme, autoimmune hepatitis, AIDS, Parvo...all negative. I don't know where to go from here and I'm not getting any better. My children and my husband need me and I don't have energy. The heat is already bothering me and making it worse and I just sit here and cry. Family history of fibromyalgia, MS, RA, ALS, and nearly every other autoimmune disease you can think of. Can someone please give me some advice?

Sorry so long but I wanted to try to include everything. Thank you!

 
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Old 05-19-2017, 01:12 AM   #2
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Re: Can someone please help me? I'm lost...

Hi. I am so sorry you are going through this. It's so hard when you feel like your body is working against you. �� A few questions come to mind when I read your post... are you following a special diet for Celiac or are you being treated? How were you diagnosed? Have you been to see a rheumatologist? Are you taking supplements for Vit D and B12? Don't give up. I've read so many stories on here where it has taken time and a string of doctors for people to get diagnosed. Hang in there, you are not alone.
Take care.

 
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Old 05-19-2017, 01:26 AM   #3
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Re: Can someone please help me? I'm lost...

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Originally Posted by VicLF View Post
Hi. I am so sorry you are going through this. It's so hard when you feel like your body is working against you. �� A few questions come to mind when I read your post... are you following a special diet for Celiac or are you being treated? How were you diagnosed? Have you been to see a rheumatologist? Are you taking supplements for Vit D and B12? Don't give up. I've read so many stories on here where it has taken time and a string of doctors for people to get diagnosed. Hang in there, you are not alone.
Take care.
Thank you so much for the encouragement! I have been strictly gluten free since diagnosis. I was diagnosed with endoscopy, bloodwork and biopsy by my gastroenterologist. My PCP referred me to a rheumatologist but they denied the referral??? I'm taking supplements for B12 and D and have been since March 7th. Just this week, my headaches have gotten worse. It's 4am and I've been up since 2. The headache was so bad I threw up. It's much better now but this pain in my eye doesn't seem to go away. I thought the six months to celiac diagnosis was bad but this has been the absolute worst. Neuro gave no advice on where to go from here and PCP is brilliant and the best doc but he's scratching his head. At one point he thought it was a viral arthritis. He did mention lupus in the beginning, which is why he made the referral to the rheumatologist. I guess with my ANA being a low positive, they didn't want to see me? I just feel helpless and like this is never going to end. Thank you so much!

 
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Old 05-19-2017, 09:40 AM   #4
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Re: Can someone please help me? I'm lost...

I feel for you and know how hard it is to deal with family, children especially, when you feel so ill. You do have several symptoms that could fit with lupus, so I think the autoimmune issue should be pursued. Migraines, bladder inflammation,skin burning, joint pains, fatigue and muscle weakness can all occur in lupus. I have had it 35 years and my first + ANA was only at 1:40. It went higher later, but you have not had symptoms for that long, and it can take months/years for it to show up at higher levels. There are several other tests a rheum or your PCP could do to check this out further. Anti-dsDNA, anti Smith, anti-RNP, sed rate, CRP, would all be helpful, plus a repeat ANA. I would ask your PCP to discuss your case with the rheum and advocate for you to get in for a consult. Maybe if rheum knows your symptoms in addition to labs, he/she will be more likely to see you. Or try a different rheum if one is available. Good luck. I hope you get some additional help in a timely manner. Let us know what happens, please. Whoops, I put a comment in the wrong place. See below.

Last edited by ladybud; 05-19-2017 at 09:43 AM. Reason: Because of your symptoms, I would also make sure your thyroid levels and anti-thyroid antibodies are checked in serum too.

 
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Old 05-19-2017, 10:02 AM   #5
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Re: Can someone please help me? I'm lost...

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I feel for you and know how hard it is to deal with family, children especially, when you feel so ill. You do have several symptoms that could fit with lupus, so I think the autoimmune issue should be pursued. Migraines, bladder inflammation,skin burning, joint pains, fatigue and muscle weakness can all occur in lupus. I have had it 35 years and my first + ANA was only at 1:40. It went higher later, but you have not had symptoms for that long, and it can take months/years for it to show up at higher levels. There are several other tests a rheum or your PCP could do to check this out further. Anti-dsDNA, anti Smith, anti-RNP, sed rate, CRP, would all be helpful, plus a repeat ANA. I would ask your PCP to discuss your case with the rheum and advocate for you to get in for a consult. Maybe if rheum knows your symptoms in addition to labs, he/she will be more likely to see you. Or try a different rheum if one is available. Good luck. I hope you get some additional help in a timely manner. Let us know what happens, please. Whoops, I put a comment in the wrong place. See below.
Thank you SO much for the advice! My PCP is working me in because I told his nurse that I'm either going to the ER or seeing him and I'd much rather see him. I will discuss these tests with him and hopefully at least get something today that will help. I use essential oils and they've always worked when I've had issues but they aren't touching whatever this is. It is beyond comforting to know I'm not alone! Lupus was actually the first thing suspected so I am going to push for more tests (not sure I have any blood left - ha). I'll let you all know how it goes!

 
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Old 05-19-2017, 12:38 PM   #6
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Re: Can someone please help me? I'm lost...

I have been rather absent lately, so I am glad I caught your message just in the nick of time before your appointment. There are still other tests that can be done, but these should cover the bases initially. The sharp shooting pains in your chest could be pleurisy if they occur on deep inspiration. That is also a common symptom in lupus. The ER is virtually worthless for visits like you need, as they really only deal with acute (short lived) emergency symptoms that are life threatening, require admission or surgery, and they do not do much if anything for chronic symptoms, so I am glad you chose your PCP instead. I do hope you have these tests pending after today's visit. You can post results, if you'd like, when you get them. Don't give up. You have a strong family history of autoimmune disorders and the association of celiac disease is significant as well. As soon as this is identified, you can begin treatment, which should help in many respects to make you feel and function better!

 
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Old 05-19-2017, 01:49 PM   #7
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Re: Can someone please help me? I'm lost...

Ok, PCP is still stumped but assured me he is going to help me find the answers. He is starting me on migraine relief medication (depakote) in the hopes that if I can get the headaches to subside, my other symptoms will start to calm. He also assured me that he knows this isn't In my head - as one previous doc tried to tell me. I was hyper reflexive today (as I was before) and he is noting that for rheumatologist. I shared with him the panel information you gave me and he has included it in the information to the rheumatologist. He suggested taking some time off from work as I'm stubborn and have not missed a single day unless I had tests. I think I may take his advice and take a few days to try and recoup from all of this. He did express concern for my stress level and wants to see me back in three weeks but hopefully the rheumatologist appointment will be before that. I am wondering if I should, at this point, attempt to find an immunologist? He said my Igg was low but not clinically significant and to be honest, I get extremely confused in all of this so I don't know if it would be significant to someone who specializes in autoimmune and immune deficiencies. It is so much information and my brain has been far too tired to understand the research. Thank you all so much for helping me cope. It's so hard to try and get to a diagnosis but I'm trying very hard to remain positive.

 
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Old 05-19-2017, 03:35 PM   #8
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Re: Can someone please help me? I'm lost...

Immunology and autoimmune diseases are some of the hardest to wrap your head around, even for people with medical backgrounds. Don't blame you for feeling confused and stressed. Time off work may be helpful to allow some rest. Getting overly fatigued makes it all worse. Hyper relexes can occur in excess thyroid (the reason I suggested getting thyroid levels done for high or low). Immune deficiencies like low IGG can occur in lupus as well. It seems counter-intuitive since Lupus is a hyper (overactive) immune process. Low IGG could result in frequent infections or repeat infections turning acute into chronic if very low. I would focus on the rheum consult now, then consider immunology consult if frequent infections persist.

Last edited by ladybud; 05-19-2017 at 03:37 PM. Reason: typos

 
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Old 05-19-2017, 04:28 PM   #9
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Re: Can someone please help me? I'm lost...

Quote:
Originally Posted by ladybud View Post
Immunology and autoimmune diseases are some of the hardest to wrap your head around, even for people with medical backgrounds. Don't blame you for feeling confused and stressed. Time off work may be helpful to allow some rest. Getting overly fatigued makes it all worse. Hyper relexes can occur in excess thyroid (the reason I suggested getting thyroid levels done for high or low). Immune deficiencies like low IGG can occur in lupus as well. It seems counter-intuitive since Lupus is a hyper (overactive) immune process. Low IGG could result in frequent infections or repeat infections turning acute into chronic if very low. I would focus on the rheum consult now, then consider immunology consult if frequent infections persist.
I honestly can't tell you how grateful I am right now that I found this board! I so appreciate the insight and advice you have given. It's definitely been a trying time and all the uncertainty makes it worse. I'm hopeful that I am getting closer to answers and proper treatment! I've said through the whole process that I just need the name of the giant I'm fighting so I can win! I'll update when I get answers!

 
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Old 05-19-2017, 06:16 PM   #10
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Re: Can someone please help me? I'm lost...

Quote:
Originally Posted by Rockstrmum View Post
I honestly can't tell you how grateful I am right now that I found this board! I so appreciate the insight and advice you have given. It's definitely been a trying time and all the uncertainty makes it worse. I'm hopeful that I am getting closer to answers and proper treatment! I've said through the whole process that I just need the name of the giant I'm fighting so I can win! I'll update when I get answers!
This board is very helpful and I would encourage you to stay in touch with us. There is nothing like being in touch with people who have been through what you are experiencing and come out on the other side. There is a lot of validation, support and knowledge here from volunteers
who care to help others
are just paying it forward. Please stay in touch and know that others care about you.

 
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