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Old 07-21-2004, 10:25 PM   #1
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I am new and need help!

Hi Everyone,
I am sorry for all of you who suffer! I have been sick for some time. I have a great deal of urological problems to start and started having bouts of Iritis (inflammation in the iris, used steroid drops to help). eye dr. performed some tests because he felt it was trying to indicate something. Then the questions arose.
My ANA has been positive twice, RH positive once, ANA Titer is 1:2560, speckled pattern. My TSH is low and my Parathryoid Hormone is High. Like a great deal of you I am tired all the time, can't sleep, my knees, hips, back, neck, elbows basically everything hurt constantly. I have had two bouts of Pleurisy iin the last 4-6 months, I just got over a terrible case of shingles. I can't remember what happened an hour ago much less a year ago. I feel like I am forgetting everything about my children. It saddens me so much. I am 34, mother of four Hannah 9, Emma 6, Olivia 6 and Joshua 3. My Rheumi is so vague, says for sure FM but doesn't want to say what other disease I am dealing with yet. My meds are Plaquenil 200mg/bid, Zanaflex 4mg 1 a day, Prednisone 5mg in the morning, Bextra 10 mg in the morning and Neurontin 300 mg twice daily. I think I am dealing with Lupus but he won't say anything.
My depression/anxiety is at a alltime high right now and all I feel like I am doing is being sad and crying when I am alone. My husband travels Mon-Fri for work and I am so scaired and feel alone. I am so glad I found this on the web so I can communicate with some of you who are in my shoes right now.
One visit my Rheumi asks me why I am on Estrogen, it bothers me that he has right in front of him my chart that explains why and then the next apt. he says how is the plaqenil working for you and I say that you never gave me a script for it. He goes oh I must have forgotten your last visit. Damnit I am a human being and feel like he is not all together with it. He is at the Ohio State University and is well known so I felt like I should be comfortable with him but I feel like he is hiding something from me. Do you think I am deal with Lupus or something else? Any input would be greatly appreciated, I am ready to lose my mind!!! Thanks a great deal!
Lisa

 
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Old 07-22-2004, 12:17 AM   #2
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Hi Lisa,

I can relate to alot of what your going through. I'm so sorry that your having a hard time with it. Like you my rhuemy won't come out right and say what exactly is wrong with me. She says that I definitely have Raynauds (which I was aware of), Fibromyalgia and then she stuck me with MCTD (Mixed Connective Tissue Disease). To me this is like a cop out. I test positive twice for ANA, Anti ds Dna, RF not to mention my sed rate and complement are elevated as well. She refuses to come out and say that it's SLE, but just says that it's MCTD becuase I have mild RA and some other disease. I'm not content with this diagnosis, but I am getting treatment which is good. I take Plaquenil 200mg, Naprosyn 500mg, Elavil 25mg and Hydrochlorothiazide 25mg (water pill for edema). Most rhuemy like to wait for more symptoms to present them self before making a positive diagnosis of LUPUS.

In your case, I think your rhuemy doesn't need to see anything else, it should be evident already. If your not happy with your rheumy, then it is your wright to find another one and to continue doing so until you find the one that your happy with. You should'nt feel stuck or obligated to the rheumy you have now. If you don't feel comfortable with him/her then find another. I wish you good luck and stay well.

Michele

 
Old 07-28-2004, 03:54 AM   #3
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Re: I am new and need help!

Hi Lisa--
I just wanted to say welcome! I hope you get the help that you need. I too am in in between land. I finally got an appointment with a rheumatologist due to an appt cancellation who told me to go home, go off the prednisone (was on 80 mg daily), get sicker, and come back. I felt like I'd wasted my $15 for the copay which seems like an awful lot these days due to missed work and all these medical bills plus the gas money to get to the rheumatologist and the time my hubby took off work. However, I understand his reasons. I think you have every right to be up front with your physician and ask them flat out your questions and concerns and get answers and if you don't like them then see if you can get copies of your records and move on to someone who may help you better than your current doc is. I'm starting to have mixed feelings about doctors anymore too but I am hopeful that one of these days someone will help me and I believe someone will help you too! In the meantime, you hang in there! Take care of your babies the best you can and take care of yourself as well. This too shall pass. Thinking of you and wishing you the very best!!
Big Hugs!
Shawnee
P.S.--I'm 25 and the mother of two boys Caden is almost three and Logan is 18 months, I can identify with the guilt you feel over not feeling well and wanting to have more energy for your kids!

 
Old 07-28-2004, 09:02 PM   #4
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Re: I am new and need help!

Thanks you guys for your interest in helping me through this. I am not sure if you will see this but will give it a try. It is great to have this board to communicate with people who share some of the same trials and tribulations that you are going through. It is amazing what we do to get through things. I know days go by and I look back and think "How in the world have I gotten through the last few days". but we manage to keep "chugging" along. Thanks again!!!
Lisa

 
Old 07-29-2004, 08:38 AM   #5
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Re: I am new and need help!

Hi Lisa,

Welcome to the boards. I am not anywhere near an expert on these things as I was just Dxed in mid June. Until then Lupus was pretty much an unknown for me. From what I am reading you are being treated with the same meds and dosages as many lupus patients so even if your Rheumie hasn't specifically mentioned it, he is treating it. The treatment is much the same for several of these autoimmune things. I do agree that a dx of FM is about as vague as you can get. So many other things cause FM that I wonder if it isn't just a cop out on many DR.s part. When they can't find anything they just say FM.

Have you visited the Lupus Foundation web site yet? They offer much into there on this ailment. If I am reading my info correctly Lupus is a highly individual disease and everyone reacts differently. You certainly have seveal symptoms of Lupus and it does appear you are being medicated as if you have Lupus. I can only imagine how difficult it is to have young children at home and suffer like this. It must to terrible things to your self esteem, not being able to be the mom you want to be. All you can really do is tell them you love them.

I am alone much of the time too. Hubby is long hauler and only home 1 or 2 days a week; sometimes only 4 days a month. It was difficult raising 3 kids. Sometimes I felt as if I were widowed even though he called several times a week. I am 54 and now enjoy grandchildren but I could not have them stay here more than a day or two anymore. I just couldn't do it.

You know you can log on and cry or vent here anytime. Someone is always here and able to understand. I hope you feel better soon. I will certainly have you in my prayers.

May God Bless You
Bonnie

 
Old 07-29-2004, 09:35 AM   #6
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Re: I am new and need help!

I wish you the best Istoof

I have been sick for probably 15 years (or longer) and the only thing that showed up in my blood work was elevated inflammatory levels. I was told I had fibromyalgia (which I do!) but found a good Rheum. at a teaching hospital that specializes in Fibromyalgia and lupus about six months ago.

My lab work has only recently shown indication of autoimmune disease (positive ANA, etc.) and was told I have Connective Tissue Disease, Raynauds and Fibromyalgia.

Well, I am in a huge flare and my elbow blew up like a softball - so painfull (that was a new joint to swell), other joint pains, I got the rash on my face and neck, exhaustion, vomiting and nausea and I have been running a fever of around 100.6 deg.

Went to the Rheum. yesterday and he said "I am fairly certain you have lupus". Until he saw me in a pretty bad flare and his examination concurred with what I had been telling him in the past, he was reluctant to give me a specific diagnosis. I think that is common. He also told me that my Fibromyalgia was active (tender points) but that FM is common with lupus.

He gave me a cortisone shot in my elbow, increased my prednisone (to 20 mg) and I am starting methotrexate this weekend.

I am already taking Plaquenil.

I feel completely overwhelmed. I know that I have been sick for a long time, but when you hear it outloud, it's really difficult.

I hope you can get the answers to your questions. If you can't go see someone else. I know how that can be but it just takes the 'right' doctor who is willing to spend some time and effort.

caden/logan_mom: Did your doctor give you a taper for your prednisone?

Mere --

 
Old 07-29-2004, 07:17 PM   #7
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Re: I am new and need help!

Hi all,

I was dxed with "probable lupus" 5 years ago. My rheumy said I definitely had an autoimmune disease (positive ANA, elevated sed rate), but that time and symptoms would determine which autoimmune disease I have. He said we'd treat it like lupus until, if and when, other syptoms developed to point to another disease.

My worst symptoms happened when I had an allergic reaction to Celebrex - that caused my joints to balloon up. I'd never been allergic to anything before that.

I'm doing fairly well as long as I avoid the sunlight and rest.

Wishing you well - Barbara

 
Old 07-29-2004, 08:28 PM   #8
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lstoof HB User
Re: I am new and need help!

Hi Gals,
I really appreciate all the warm welcomes from you. It is so nice to know you are out there to answer questions, listen or vent to! It is so overwhelming. I had my Bone Density faxed to me today to send to my gynecologist and it said the findings were Osteopenia and fracture risk is increased 4-fold over that of similar patients. Nice of him to share that with me at my last apt. So frustrating. Seems like everyone has a dr. they are not 100% comfortable with but it shouldn't be this one. Thanks for listening to me!!
Lisa

 
Old 07-30-2004, 09:25 AM   #9
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Re: I am new and need help!

Quote:
Originally Posted by lstoof
Hi Gals,
I really appreciate all the warm welcomes from you. It is so nice to know you are out there to answer questions, listen or vent to! It is so overwhelming. I had my Bone Density faxed to me today to send to my gynecologist and it said the findings were Osteopenia and fracture risk is increased 4-fold over that of similar patients. Nice of him to share that with me at my last apt. So frustrating. Seems like everyone has a dr. they are not 100% comfortable with but it shouldn't be this one. Thanks for listening to me!!
Lisa
HI Lisa,

I don't know much about your history, but you mentioned osteopenia. Were you aware that young people with osteopenia should be screened for Celiac disease? Osteopenia in young people is one of the most common symptoms of Celiac. Do you have any anemia, GI problems, mouth sores, etc?

Celiac disease is an autoimmune disease too, and it is often found along with other autoimmue disease, especially autoimmune thyroid disease, diabetes type 1, sjogren's, lupus, and RA. I would suggest the doctor screen you for Celiac as well, because it can result in some real nasty long term complications.

My son has it, but presented with mostly GI symptoms. But adults with the disease can often be asymptomatic or have non-GI symptoms. May be something worth looking into. Good luck and hope you feel better soon!

 
Old 07-30-2004, 01:41 PM   #10
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Re: I am new and need help!

Hi, Lisa (Istoof).

Welcome, though I wish you didn't have the problems that bring us all together here...

Anyway, I'll do a "me, too" on a couple of the things you mentioned. I had lots of urological problems (urgency, frequency, pain, stones, but not infections), starting in my late 30's, in the 5-10 years before I was Dx'ed with subacute cutaneous LE (SCLE), a subset of SLE.

I thought "mid-life female stuff", until it drove me nuts. I went to a urologist for some time, tried meds that didn't work and made me sick, etc. The urologist considered testing me for interstitial cysititis but held off pending all the other tests I was having (bloodwork, kidney function, skin punches, etc.) I improved quite a bit after starting Plaquenil (but who knows cause vs. effect anymore!).

Anyway, what seems clearer in retrospect is that my urinary issues act up during a flare. Plus certain foods and beverages get to me. If you were to broswe for diet suggestions for IC (interstitial cystitis) patients, that's just about what helps me when I'm off. Things that bother me include acid foods, carbonated beverages, caffeine, wine (but I never touch alcohol anymore anyway), tomatoes, salad dressings, spicy foods, raw onions, etc.

My earliest DEXA (bone density) showed osteopenia, and it's now offically osteoporosis in the lumbar area. Runs in my family; I'm small-boned and of w. European descent; have had years of irritable bowel syndrome (a chronic malabsorber?); etc. All sorts of risk factors. I've been on Fosamax for about 3 years now. Interestingly, I'd had many years of horrible back stiffness & pain, on & off. Within a few weeks of starting Plaquenil, my back felt much better. And no more sciatica either. After all those years of trying chiropracty, yoga, etc.---I wonder if my problem all along was simply inflammatory episodes? Hnnnnnnh.

I avoided HRT like the plague, as I'd always reacted horribly to hormones of any sort (birth control pills). After Dxing lupus, my rheumie said he'd OK HRT only if I were miserable with hot flashes, etc.---which I'm not. I do think drs. differ widely on this subject...

Anyway, greetings again & hope this finds you headed to a great weekend. Best wishes, from Vee

 
Old 07-30-2004, 02:42 PM   #11
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Re: I am new and need help!

VeeJ:

I had a TAH when I was 30 because of chronic inflammation (???!!!) not related to any type of bacterial infection. They never did find the cause. Same thing with my gal bladder and biliary tree (no stones, just inflammation) - I was 24.

Anyways, I was on HRT for 10 years and just recently went off of it because of migraine. I have been off of HRT for almost 2 years and I feel fine. Some hot flashes, but with all the other stuff, it seems relatively minor.

I also have risk of osteoporosis (Mother has it) and am slim and of N. European descent. So far my scans are fine, but I take heafty doses of Calcium, Vit. D and Mag. as the Prednisone I take puts me at a higher risk.

Thanks for your story VeeJ and BarbaraH

Mere --

 
Old 07-30-2004, 08:02 PM   #12
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Re: I am new and need help!

Mere,

And I just saw in my Dr. Wallace hardcover the other day how common gallbladder problems are in lupus patients.

Anyway, I'm sorry to hear of all the problems you've got going right now. I hope to see updates as you start the new meds. Hang in there. Thinking of you, Vee (P.S. I just looked up methotrexate and read that it's been used for RA in low doses for many years; and in lupus patients with joint inflammation but without "significant" skin or organ-threatening disease. Sensitivity to UV light may increase, so says Dr. Wallace... GOOD LUCK WITH THIS!)

 
Old 07-30-2004, 09:21 PM   #13
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Re: I am new and need help!

Hi Again,
Interesting to see someone mention Interstitial Cystitis. I was diagnosed with severe IC 17 years ago. I was 17. Have had a tough time with it. My urological problems are pretty severe. I had a uterine rupture with my last child and almost died. I lost 80% of my bladder, damage to my bowel, stomach, kidneys and ureters. I don't wonder if all of these problems are drug induced from all the meds I have been on the last 3 1/2 years. Probably so. I have had roughly 20 or so surgeries to help in repairing the damage. My urologist worries with all the new meds I am on and how my kidneys will react to them. Only time can tell. It scairs the hell out of me, do I take them or do I suffer. What a choice. I just hope my Rhuemi remembers to do what he feels is in my best interest for now and long term. My husband has always said he thought I had something wrong with my immune system but now that something has come up he says "you don't have anything wrong with you, it is just your body trying to still recover from the rupture" He just won't face anything. We try to talk but don't get anywhere. Help!!! Thanks,
Lisa

 
Old 07-30-2004, 11:01 PM   #14
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Re: I am new and need help!

Hi all--
Interesting posting going on here! Just wanted to answer Mere and say that no, the rheumy I saw did not taper me off prednisone 80 mg (!!!, I couldn't believe it) He said that after being on it only two weeks that my body wouldn't go into shock or anything and that if I was really really miserable I could taper down 20 mg a day until I got to 10 mg, then 5, then go off. I actually think though that he read over my symptom journal and is curious of lupus and wants to see me in flare. He told me to go home, go off the prednisone, get sicker, and come back with symptoms to show him and then we'd redo the blood work. I did okay I guess, I'm getting worse but still feeling better than before I went on prednisone. I did have a bout of mouth sores that lasted a good week (still have tender mouth) also had nose sores, ear sore (I've had these before too but never thought that's what it was until the ear pain cropped up with all the other sores), and a big white blister looking sore right outside my vagina (hope that's not too personal) that one was tender. I also had swollen lymph nodes that seem to be "hopping" back and forth still, you know underarm one day, neck another day. I also really learned what tender points are, whewwwww! I think if I would have had a tender point evaluation for fibromyalgia I would have scored 18/18. Boy was I hurting and I just felt like someone took a baseball bat to all those little trigger areas. Anyway.
Interesting about the gallbladder stuff, I had mine removed when I was only 19 years old about when all this other stuff probably started if I really get back into the history of it all. Very interesting.

Lisa, don't worry about your hubby, I'm sure it's hard for him to watch you be sick and especially where you've been through so much life threatening scary stuff with your last baby, he's probably scared to death to even admit that anything is going on. I have found the opposite in my case, my hubby has been so much nicer and more understanding about my health problems once my GP doctor ran some tests and gave me a name for what is going on. Before that I felt like I'd been saying, I'm so tired, I'm so hurty, I'm so sick for so long and was talking to a wall who thought I was just a hypochondriac. We all react differently I think and this chronic illness junk effects the people who love us too and I think they have their own emotional ups and downs just watching us be sick and not being able to do anything. Hang in there. Be patient.
Love you all, you're wonderful. Take care and hang in there!
Shawnee

 
Old 07-31-2004, 07:50 AM   #15
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Re: I am new and need help!

Hi Lisa, I am sorry you are feeling so bad. If your doctor is not helping you, please see another one. It is their job to help. You need to be able to trust him.

You may want to check out Lyme disease as a possible diagnosis. Many people who have Lyme have had positive ANAs, including myself. Also, many people who have Lyme were first diagnosed with other diseases. When Lyme disease is a possibility, it is imperative to see a Lyme knowledgable doctor. No test is completely reliable and many doctors follow outdated protocols. Lyme disease is the second fastest growing infectious disease in the US after AIDS, yet nothing is being done to educate the public and the medical community. It has been reported in every state.

For a Lyme disease symptom list, please see the post "Lyme Disease Information" on the Lyme board at this site.

Hang in there and don't give up!

 
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