Sick of being sick

[pietiangel]

I have been sick since 2004 when my daughter was born and have not been the same since. 4 months after my daughter was born, I woke up with ptosis in my left eye and felt weird all over. I drove to work, but right when I got in the door I dropped everything and fell on the floor. I went from slurred speech to not being able to speak at all. I had tremors and blurry vision in left eye, left side of face felt heavy as well as my legs, and I could not walk. I was admitted overnight and they ruled out stroke and MS with an MRI. I have been to 2 neuro's since and they have ruled out MS. My aunt and grandmother have it and they wanted to make sure that I didn't too. I do not think I have MS, but I know I have something autoimmune going on. Recently I have had new symptoms besides the weird feeling in my back that causes me to have to sit right away or fall. I can barely wear my bra anymore because I feel irritated with things touching my skin, I get heat rash in the shower now, I itch all over no matter what time of day or how much lotion I put on, and I can barely move in the mornings when I get up. I am stiff all over when I wake up and my left eye droops every morning, but gets better as the day goes on. I cannot sit on the floor very long with my kids because I cannot get up if I sit too long. I have found my hands stiff in a ball a few times and had to force them open. I find myself having swollen lymph nodes in my groin and neck at times and swollen tonsils.  I have had so many tests done that I am fed up. I think I am on the right track, but how do you ask your doctor to check for certain things when he thinks you are crazy anyways? I have had a slightly positive ANA and then it was normal the second time. My LP was normal, I had low C4 and low C5 levels, I have always been anemic, positive EBV titers, positive anti-myelin antibodies, low amino acids, I also had a positive rheumatoid factor. I have this weird feeling that something to do with RA or Lymes, but I have not been checked for Lymes and my doctor doesn't think it is necessary to recheck the RF because he thinks it is stress. I have lost so much weight that I feel horrible. I was 170 last March when I had my son and I am now 119. I wore a size 9 before my pregnancy and now I am in a 4 1 year later. I went to a rheumatologist and he said I had fibromyalgia, but the neuro said no. I have not been back to see either one because I feel like they think I am just depressed. The depression and confusion did not start until everything else started and I think it is because no one will listen to me. My husband doesn't understand and there are days that I can not get up and he doesn't believe me and will start a fight over it. It is ruining my marriage and my quality time with my beautiful kids. If anyone has any input please let me know. I have read a few posts on this forum and a lot of you seem to have similar symptoms. Thanks for listening!

Pietiangel

[pietiangel]

Thanks Cindee56! I will try to do that and gain weight, but I am afraid that no matter what I do to gain weight, that if I don't figure out the problem I will continue to just lose the weight. I just got back my hormone testing results and I was shocked because I wonder if being so deficient of these hormones is part of my problem. Thanks much for the advice, I appreciate it.

                              My result                                           Ref Range
DHEA                    dl (too low to detect)


Pregnanetriol                   0.48 L                                        1.00-3.90
allo-Tetrahyrocortisol       0.15  L                                         1.10-5.60
Tetrahydrocortisone, THE 3.40 L                                          4.60-11.60
11 HSD index                 0.38    L                                         0.93-1.37
Androstanediol              dl (too low to detect)


Androsterone                   0.48   L                                         2.30-9.70
Etiocholanolone               1.24    L                                        2.40-9.40
11 Keto-androsterone     dl (too low to detect)


11 hydroxy-androsterone  0.28  L                                          1.30-4.80
17 Hydroxy-corticosteroids  5.30 L                                        10.20-23.60
17 Ketosteroids                 2.38     L                                      9.90-30.60    
E/A 5/5a ratio                    2.6   H                                         0.7-1.9
THF/a THF ratio                  7.67  H                                       0.70-3.20
Anabolic/ Catabolic Balance  0.45  L                                     1.00-3.86
Estone                              16.66                                          2.40-46.80
Estradiol                             2.01                                          1.20-15.60
Estriol                                dl (too low to detect)




Aldosterone                           3.9 L                                       6.0-44.0

pietiangel

[Cindee56]

Let us know what you find out.  Don't give up.  Try the protein shakes or high calorie bars to add weight.  I know that this is bad for you, but I have the opposite problem--I need to lose weight.  We're never happy with our bodies, are we?

Keep searching, I know it's frustrating.

[pietiangel]

I have tried to get in with an endo doc that will take me without a referral but the one's around here will not do that and I can't get my pcp to refer me because he doesn't think it is necessary. I have tried to get in with my rheum doc again , but now he is not in my new insurance's network. I don't know how much more I can take. If I lose anymore weight I will blow away! I want to be my size 9 again, not a 4! I feel sickly and horrible and cannot stand to see my bones in my chest. I have this feeling that thyroid has something to do with it, but my TSH was 0.95 (0.40-6.20).I had it checked on the 8th. It seems like it is on the lower side, but he said it was normal. It was 0.99 a few months back, so it has lowered some since then. Thanks much for the advice and I hope you guys feel better too. Keep your heads up high. I am about to come up on my 4 year mark since this all started, maybe I can get some answers soon.

pietiangel

[Librasapphire]

I just want to say that I too have get to the stage of not wanting to visit dr as he thinks that I am a crazy hypochondriac...and I know what you mean about not being able to make the most of the children I feel so angry and worry that I am not giving them my best because these things just overshadow everything. Hope you get a breakthrough soon ((HUGS))

[Cindee56]

Hi, I am sorry you are going through all this.  I have arthritis, neck problems, tendonitis, thyroid and other issues.  I'm trying to find a good rheumatologist myself.

I also understand how hard it is when your husband is unsympathetic.  I have one of those myself.  I don't know why men are like this, but it's hurtful.  It's especially hard for you, I'm sure, to take care of your children.

As far as doctors, you have to keep looking because so many of them are jerks!  They are fine when you listen to them and come back saying *I feel better* but if not, they get all nasty and tell you it's in your head.  I won't stay with that kind of doctor.  I will go through every one on my insurance plan if I have to until I find one that's at least halfway decent and treats me respectfully.

Keep looking for a good rheumatologist, maybe an internist or endocrinologist also.  Good luck.  In the meantime, maybe you can get help with your kids or at least try to rest more.