New & Frustrated

Good morning all :) Writing from the US. Forgive me in advance as I am extremely long winded. I've been reading different posts trying, hoping, to relate. And I do on so many levels. I haven't been diagnosed and am not even sure what I'd be diagnosed with. An Auto Immune issue of course, but which one??? My symptoms started about 6 yrs ago and I've been through a few tests from 2 GPs, an Immunologist, been to a Rheumatologist, Pain Management (I refused the meds they were offering since they were physically addictive and due to finances I can't maintain a script)....sigh...I have connected the dots to some sort of Auto Immune and can't understand why they won't pursue more testing. I was POS for ANA but the Immunologist brushed that off to meds. When asked if the meds I was on could do that, he said it was unlikely but could be...????? What??? And that we would probably never know what was causing my symptoms. I have gotten the same response from both GP's, the Rheumatologist, & Pain Mgmt. Needless to say I now feel like a hypochondriac and last week my ANA came back Negative. I instantly felt as if I'd lost my mind since that POS result yrs ago is the only saving grace I've had to explain my myriad of symptoms.....Is anyone else out there losing their minds? I am a Mom (kids are 21, 20, 18, and 2), I work full time and am respected at work. I don't call in sick (w/ the exception of the stomach flu last yr!), I am a responsible, and so I once thought, and a SANE individual. I avoid the doctors as much as possible until it is clearly UNAVOIDABLE! My symptoms come and go but a few are constant. Constant - skin seems sore or like it's going to bruise on legs and arms, shoulders. Joints in hips & knees, sometimes ankles, elbows hurt to sleep on and sometimes just to sit in general. I seem to feel better when moving. tired of the headaches & fatigue. I don't sleep well at all so that could be where the fatigue is from. Poor circulation in my hands and feet when lying down also. And I have developed light spider/pink veins the sides of my nose and front of my cheeks...not a raised rash, their light pink lines or veins???. Symptoms that come and go, extreme itching of the inner ear (I sleep w/ q-tips), hands & feet - at night mostly at night in bed, but also itching of under arms, the nape of neck and groin (high heat areas?), demographic skin, vertigo - mild, heart burn/indigestion/sour stomach/stomach lesions (tested negative to celiac). And my newest as of three weeks ago, numbness &/or pins and needles on the ENTIRE right side of my body. CT Scan w/out contrast showed nothing. Neck and back X-rays are normal. My GP isn't concerned????? I have an appt. w/ a Neuro in 6 weeks. It's getting better on my right leg, foot & stomach & back, but it's worse on my entire scalp. It'll probably be gone by the time my Neuro appt gets here. I think I'm losing my mind....ANY ideas would be helpful. I am becoming quite emotional since this newest issue! 

21 Replies

  • Hi chowell71,

    I'm sorry to hear that you are having so much trouble getting a diagnosis. Perhaps it would help to get a referral to a rheumatologist who specialises in lupus for a second opinion? I'm afraid I don't have any information about specialists in the US, but if you contact the Lupus Foundation of America (, hopefully they could help you.

    If you need more information about lupus and how it is diagnosed, you can download our information pack from our website at

  • Thank you Paul. I will contact the Lupus foundation. I will also download your information pack. I know I'm grasping at straws but well....I feel like that's all I have at this point. I've tried reducing my wheat intake, eliminating 'night shades' from my diet, eating only organic. I'm afraid to take meds. I don't believe what is happening to me as being "unexplainable". In this age of advanced science and technology, there has to be an answer out there. I still have a 2 yr old to raise :) Again, many thanks....

  • Have you been prescribed any treatments for lupus in the past?

  • No. The only things I have been prescribed is Effexor for Anxiety (thought to be the cause of my skin issues!) and Zyrtec for the actually works. I only take it when the itching flares up. The Rheumatologist I had seen only checked my joints for arthritis and found bursitis in my hips, which I had gotten shots for a couple of times. The pain from the shots seems to last almost as long as the relief! (not really, but the pain does last a good week or more)...Another symptom also, slow healing....I can get a scratch or cut and it is easily months before it's healed. Is that just age, I wonder? I'm 45. I've had several surgeries and biopsies and each time Lymphocytes were found. No rhyme or reason to the body part - abdominal cavity outside my organs two separate times, & inside my stomach & intestines two separate times. Aside from the Gastro checking me for Celiac, nobody has looked to test for anything else. My Pain Mgmt wanted to put me back on Effexor.

  • I was also prescribed Tagamet AND Prilosec (the Prilosec for my stomach) to take together. The original thinking on the Tagamet was to take in conjunction w/ the Zyrtec for my skin because it was THAT bad. The Tagamet has anti histamine properties I guess. When I went to the gastro and they discovered how bad my stomach was, he prescribed Prilosec. I informed him of the Tagamet and he was surprised I had stomach issues at all and said that yes, I probably needed to take both after all. I am now in Nexium and off the other two. I've tried weaning myself off of it, but it's a back and forth battle. I also have bladder issues, (been to a urologist). It seems I am simply falling apart. I noticed shortness of breath as a symptom from others. I went to my GP last year for that. I smoked about 2 pks of cigarettes a week at the time and after I quit, 9 months ago, the shortness of breath seemed to subside. Even though I wasn't smoking THAT much.  

  • I have no children but I feel like I'm losing my mind.  I was put in a mental hospital and said I may have bipolar disorder.  Then I went to a Neuropsychiatrist who mentioned Lupus Psychosis. Unfortunately she only diagnosises,  not treat. I can't find a Rheumatologist that is fully familiar with Lupus here in South Carolina.  I am working on moving near Atlanta Georgia.  

  • Emory Hospital and Medical School in Atlanta is where you want to be. Best MD is BC Board Certified in Rhematology. BTW do NOT not call her/him a rheumy. Dr's consider that disrespectful. Use Rh* in written comm. FACR is even better credential. Fellow American College Rhematology. All Rh*s are first qualified as Internists (in USA) I countries diff.  Ask specifically if Dr is BC in Rh*. BE means for any specialty Board Eligible. Meaning they took the appropriate training to start the process of becoming BC. Being a Fellow in any specialty is like the top 10 or 20%. A Fellow sits a written exam. Passes clinical and oral tests. Has personal recommends from specialists in that field.

    Strongly recommend only bring up physical signs and symptoms. I am not saying there isn't emotional distress and that's it's not appropriate to feel it. But very few MDs want to deal with it.Esp. in New patient. Leave all that for later. I see Dr Michelle Petri Director Lupus Center Johns Hopkins Hospital Baltimore. Southeast Airlines has many flights daily. She is one of best in country. Could be worth it. Nightshade diets repeatedly shown no effects in many many real scientific trials. Tai Chi. QiGong and Mindfulness all have proven scientific benefits. Good Luck. 

  • A lot of excellent info Bronte_Sisters, THANK YOU!!! I will look locally first for Rheumatologists w/ the BC. And hopefully even FACR. We are paycheck to paycheck so a flight or even overnight trip will take many months of saving -_- And I totally understand about divulging the emotional aspects/symptoms/side effects etc..I've decided to switch back to my GP I had a couple years ago before I moved. At this point I'm willing to drive the extra 40 mins for someone who was at least willing to send me in for tests. From there I'll get referrals...

  • Hello chowell71 -

    So sorry to hear you are having such a rough time of things. It took me over 2.5 years to be diagnosed with Lupus and Sjogren's. I went to see so many specialists and had so many tests run - most things coming back "normal". During this time, I gathered all blood test results that had come in in the last two years and put them all in a spreadsheet so that I could start looking at trends. Like you, I was having lots of joint pain and muscle weakness, fatigue and such. My forearms would go numb every night while sleeping and I would wake up to them in such pain, and with pins & needles. I also had headaches and I felt like I had the flu ALL the time. I also had chest pains as well as shortness of breath. Some stranger symptoms I had were loss of the outer third of my eyebrows and sparse/broken/short eyelashes as well as an orange tinge to my skin. I kept a list of ALL my symptoms and when they occurred. I took this list everywhere. Doctors like it when you are organized and can list off your symptoms, when they started, etc. 

    FINALLY, I had a positive ANA test (from the hematologist who refused to investigate it further) and I begged my GP to run the test again as well as an anti-dsDNA, C3c, C4c and a few other autoantibody tests. He did and once again, my ANA was positive but also, my anti-dsDNA, C3c and C4c. This was enough to get me to see a rheumatologist who did a FULL blood and urine workup on me. As I stood there, he promised me I did NOT have lupus. Well he had to eat those words ten days later because the blood tests showed that I had lupus. I was immediately placed on hydroxychloroquine. My Sjogren's diagnosis came a few months later (I have dry, gritty eyes and dry mouth).

    Where do you live? I'm in the US as well. I live north of Boston. 

    Have you had your thyroid tested? Before I got my lupus/Sjogren's diagnoses, I was lucky enough to find a private endocrinologist who took one look at me and said, "you are clearly hypothyroid." Turns out that losing the outer third of eyebrows/eyelashes are a tell-tale sign of underactive thyroid. My blood tests however always came back "normal" and even on the hyperthyroid side of things so no one (but this endo) would listen to me. I believe my thyroid issues are as a result of my AI diseases but no matter - this endo literally saved my life by listening to my symptoms and starting me on levothyroxine, on which I immediately saw improvement. 

    Okay, so where does this leave you?

    If you haven't done so already, obtain a copy of ALL your tests and look them over. Get really organized. It also helps to take someone with you to ALL your appointments. My husband is a great advocate for me  and when he started to come to my appointments, I found that the doctors started to listen to me. They would ask him questions to validate what I was telling them. It shouldn't have to be this way but I suspect they see many hypochondriacs in their practices and they need a way to weed them out. 

    Also keep a daily log of how you feel, what you did. This will come in handy - again to start seeing trends. How are you sleeping? Do you have joint pain every day? How often do you have headaches, etc.?

    Have you had these tests done: B12, Vit D, ferritin, iron? There are "optimal" ranges for these so when docs tell you your results are "normal" you really want to see where you fall in the ranges. I suffered from low ferritin, low vit D and low B12, yet docs told me I was fine.

    You say you went to a rheumatologist - what did they do for you there? (when I went to mine, they drew 14 vials of blood and also did a urinalysis in addition to a full physical exam of my joints). Do you have a copy of any blood tests they ran? You may need to find a different rheumatologist. The fact that your current ANA is NEG may just mean you are not flaring. I would want answers to why you had a positive ANA. Oh, it is important to know what exactly was the ANA result. It usually comes back with a POS as well as a titre (like, 1:640) as well as a pattern (like, "speckled"). These are important to know. The titre tells you how much they diluted the sample and it still yielded a POS. 

    I wish you luck. It may seem overwhelming but you can do this! 


  • Tracy, Thank you.....I actually have tears in my eyes (at work, no less) while reading your reply. I'm so emotional lately, lol. Sheer frustration & desperation, I suspect, of starting this quest again. Let me see if I can answer some questions. I'm currently in Norfolk, VA. I know a little bit of your general location as I am from Springfield, spent a lot of time in Hyannis, worked in Portsmouth, NH and have family there as well, have friends outside Boston also. ;) was by my own research into my electronic records that started connecting the dots and doing research. I started a binder a couple years ago but dropped it when I got no where with doctors...not to mention I can't afford the $50 specialist co-pay very often. Especially when it yields nothing but being brushed off.

    -Thyroid has been tested a couple times. Normal.

    -ANA titers were very low 1:80. So maybe it was nothing after all. All the more discouraging -_- *but the lymphocytes that have been found repeatedly and all my seemingly unrelated symptoms....sigh....

    -I don't think I had the B12, D, Ferritin checked but my iron seems to be checked every time and seems normal. Something to do w/ my liver was out of range this last time, but the doc wasn't concerned. I do have a fat deposit on my liver so maybe that was why? I will print out and add the latest results to my binder (after I find it again!)

    -I don't remember what the Rh did for me besides give me shots in my hips for my bursitis. He may drawn blood? It was almost 3 yrs ago. At that point my hip & knee pain was so bad I could barely sit. All X-rays were normal.

    -Joint pain is everyday. Somedays I think it's gone, but it usually isn't. Its just tolerable compared to previous days. Though when it does come back, it's not always both hips, but it's something fierce. Also if I stay in the same position for long my joints hurt to move them again. All of them. That's been going on for so many years. Didn't think anything of it until now that I've got so many other issues.

    -Headaches seem to come in cycles. Everyday for weeks sometimes. They were the worst ever the week before this right side numbness - cold wet & tingling feeling- set in. I had to lie down in bed after supper every night and entertain my little girl w/ my cell phone. The light from my screen hurt my head. I'm guessing these were migraines? First time in years I've had headaches that lasted that long and were that bad. But I have friends who live w/ migraines so I didn't think anything of it until the numbness set in. Still have the headaches everyday. But not on that level. I imagine in a couple weeks or in ten minutes it'll disappear for a while.

    -I don't sleep well at night. That's quite the understatement. My arms and, recently my feet, go to sleep if I have any weight on them or if I'm on my back and my hands are elevated on my stomach. I end up on my back frequently because I can't get comfy on my hips and on my shoulders. I have 3 throw pillows I sleep w/. One for under my knees when I'm on my back. And one on either side of me to accommodate when I roll on either side. I have to have a pillow for the arm that I'm NOT lying on to be supported because recently my shoulder pain wakes me from the weight of my arm pulling on my shoulder joint. What the heck???? I'm 45, NOT 85!!!

    So what are these anti-dsDNA, C3c & C4c tests?

    I brought my mother w/ me to my last appt. She will be going to every appt from now on. I am so tired, physically and emotionally. I feel like a hypochondriac. And I am so discouraged and almost resigned to accept that I'll never have a diagnosis.

  • Hello chowell71 -

    Apologies for taking so long to respond. These last couple of days have been crazy and I didn't want to fire off a quick response.

    I (and so many others) completely relate to what you are going through. Emotions are always at the surface and it takes a tremendous amount of effort to keep them at bay. Pile that on top of not feeling well ALL THE TIME and it is simply exhausting. I've been there!

    (I grew up in Chicopee - small world! When I married my husband - also from Chicopee - we moved east. Much of our families still reside in the 413 area code).

    I'm so glad to hear that you are organized. It is the only way to figure all this stuff out. Yes, I've also been brushed off by many specialists. Luckily, I have very good insurance (specialists are $20 co-pay, no deductible and I pay nothing for diagnostic tests). Aside from electronic records, do you also have copies of physical results?

    I am interested in your results for thyroid. I imagine that the only thyroid test you've had done is for TSH. That is the minimum that GP's do and it is pretty much useless. My TSH results were always "normal" yet my symptoms were clearly hypothyroid. Not until I went to my private endo was I listened to. I have responded very well to levothryroxine and after 1 yr, 10 months I *finally* believe I am nearing proper dosing. I think since I had been unwell for soooo long, I actually forgot what it is like to feel GOOD. Therefore, when I started to feel better on a small does of levo, I didn't think to increase dosage (or to ask to increase dosage) so that I could feel GREAT. (I now know I've been undermedicated).This forum (as well as hypothyroid mom's website) have helped me tremendously lately as I started to slowly increase my levo. I've also just recently added compounded T3 back into the mix (I had taken T3 near the beginning of my treatment but stopped since I didn't think it was doing anything for me). I feel I am heading in the right direction and fingers crossed I continue to improve (more energy, better sleep, no pain, etc). The important thyroid tests are Free T3 and Free T4. 

    Yes, your ANA titre is low so I can see why your docs might brush it off. The problem with ANA is that you can be seronegative but still have something autoimmune going on. I am not sure what the presence of lymphocytes mean BUT I did a quick google search and found that lymphocytes are an indication of inflammation which would play right into something autoimmune. 

    Vit B12, D, folate and ferritin are important. The body cannot function properly if these are not optimal. You should post your most recent results (with lab ranges).

    I don't think your rheumy did much for you. Did you find out if he did any blood tests?

    I also had joint pain every day. My hips would ache at night if I slept on them too long. I would wake up in pain and have to switch positions. My ankles and feet also hurt. I felt like I was 80 when trying to get out of bed in the morning. I was so stiff. 

    You mention that you get headaches from the light on your phone screen. My headaches are caused by my dry, irritated eyes and it took we a long time to put two and two together. This is all caused by Sjogren's. My eyes are very sensitive to light. I have to keep my eyes moist (I use drops daily and use an eye gel at night).

    Do you experience tinnitus (ear ringing)?

    Anti-dsDNA is an autoantibody and is  marker for lupus and can also be present in Sjogren's. You can read up on it here:

    C3c and C4c are some of the complement proteins (as is CH50). Low values are a measure of the levels of inflammation currently in your body. Complements help diagnose and monitor the activity and treatment of acute or chronic autoimmune diseases. You can read up on them here:

    Don't give up! You KNOW something is wrong and as tough as it is, YOU have to fight to be heard. I am glad that you have someone to go to your appts. She can help tremendously - just having another person there to validate your symptoms as well as listen to what is said to you (when you have "foggy brain" it can be very difficult to comprehend and retain the information. Been there!)

    I am living proof there is hope. I thought by now I'd have a handle on my conditions but I learn more and more everyday. Listen to your body. Be educated. Learning to talk to doctors can do wonders. I've learnt that the words "what's the harm is doing....?" is a great way to phrase things. I makes the doctors realize that you are not asking them for the moon! 

    Hugs -


  • A few things I thought of this morning...

    There are many auto-antibodies to test for. This is another panel:

    I test positive for SS-A(Ro) which is a marker for Sjogren's. 

    Have you ever been tested for thyroid antibodies? I test NEG but I've always suspected that AI is the cause of my thyroid woes. Can read more here:

    Another thought about the ANA is good to note that this tests for a panel of autoantibodies. I am unsure if all labs perform the same ANA test (meaning, do they all test for the same list of autoantibodies or is there variation so that if you go to one lab you could test positive while at another lab you could test negative). Did your positive test note a "pattern" along with the titre? The pattern can indicate which AI disorder is at play. For example, "speckled" (as in my case), is associated with lupus and Sjogren's as well as a few others. Can read about this test here:

    I hope I haven't overwhelmed you!


  • So I replied once and did a phone fumble and deleted it...ugh. Needless to say this reply will be shorter! Lol.

    I lived in Chicopee 25 yrs ago. Went to Elms college for a semester. Worked at Fairfield Mall for a bit. Lived up by the H.S., down by the Boys & Girls club or whatever that center was. And up the hill (Alan hill? No...that's not right....) but anyway, yah I lived there for a few yrs. 

    So Thyroid, I think was just the basic test. I can't lose weight which is why I had it tested. Even walking 3 miles, 3 times a week for months didn't help. Watching my diet, portion sizes, wheat, carbs etc...nothing. I had both ovaries removed. Turned out I had some rare ovarian cancer - Strumii Ovarii? Something like that. I'd have to look in my records. But it ONLY targets the ovaries and as long as it stays encapsulated,  which it did, it doesn't spread. So no chemo, or radiation. Just no ovaries. So hormones/metabolism did a nose dive. And I'm 45. So I could be just where I'm supposed to be, weight wise. Not liking that. 50 pounds overweight. 

    I have the exact same problems sleeping. Hips too. Did we already discuss this? 

    I'm going to jot down all the tests u suggest so when I go see my GP I can have her order them. 

    Unfortunately my insurance isn't so great. I put the family on it and had to drop to an HMO to afford the almost $1000/mos for my benefits. $25 co-pay for GP but $50 for everything else. Sigh....

    Anyways, eyes are anything but dry. They take turns running. Drives me crazy since I haven't given up my makeup yet! I have wicked allergies which could be the headaches too. Who knows at this point. Everything seems to overlap and occur "coincidentally " with some other symptom. I am just tired of feeling like crap. And well, just plain tired....all the time. Like you, I'm just used to feeling like this now. 

    You are so awesome Tracy. Thank you so much!!!

  • Ha! I did the EXACT same thing the other night! I had written a very long response and was almost finished when I decided to research a test but instead of going to a new window as I intended, I remained here and when I left this page to do the search, well, that eliminated the response I was working on! Ugh!

    I left Chicopee at age 25 - I'll be 49 this year. I worked at the CVS at Fairfield Mall. Are you thinking of Sandy Hill? That is where I lived (my parents still do!). My, it really IS a small world!

    Sorry you had ovarian cancer but glad to hear it was the kind that stayed encapsulated (my sister had some encapsulated cancer in her breasts). Female hormone imbalance is tough. I am in perimenopause, so aside from hypothyroidism (and lupus and Sjogrens) I have been also dealing with that fun. I'm on compounded progesterone cream which seems to keep my mood in line. No need for estrogen (yet).

    If you do have thyroid issues, which it sounds (to me) that you just may, dieting only makes things worse. I was very fit before all this started and still desperately tried to remain so. When my thyroid hormones are out of whack it is VERY difficult. 

    I went thru a particularly bad period from last Sept until mid-Feb when I couldn't work out at all. I was just so fatigued and worn out and dealing with chronic tendonitis in my right elbow as well as a "shoulder impingement" on my right side. (Lupus/Sjogren's seem to enjoy attacking my tendons and ligaments). Both issues are finally under control and I was able to start working out again. Its been about 6 weeks and I'm starting to see and feel results which is good for my psyche (I had lost much muscle tone and stamina but am regaining it back. I also had put on a few pounds which I hope will be gone by summer). I am convinced it is due to increasing my levothyroxine and also adding in slo-release T3. I don't think I'm at optimum dosing just yet but getting there. 

    I also don't diet. I eat healthy most of the time but do not deprive myself in any way. I have found that I have had to increase my protein intake significantly (I used to eat so many carbs) and also, eat more good fats than I used to. Seems to work for me. 

    As far as insurance goes, have you checked out the HealthConnector? We were on a plan thru my husband's work but now have to switch from the Cobra plan to our own plan. We thought we were going to have to pay thru the roof but we went thru the HealthConnector and have qualified for a REALLY good ZERO deductible plan from Neighborhood Health Plan at a quarter of the cost of what we were paying a month thru Coba. Many folks don't know about it and just assume it is only Mass Health but they offer so much more including assistance. If you want details, PM me. 

    My eyes can also tear up at times and I get runny noses so often. Seems counter to Sjogren's but alas, there it is. Your makeup could be causing irritation. I know how you feel...just when you think you *might* have a handle on things, some new crazy symptom shows up! It's exhausting! If you had spoken to me around the holidays, I was completely fed up. I almost resigned myself to the fact that I was just never going to feel good again. Then I went to my endo in mid January and he advised a slight increase in levo. That worked initially, but soon symptoms returned. By my early Feb appt with my rheumy, I wass still feeling so fatigued. All she could say was "I don't think that is related to lupus/Sjogren's". Was sooo depressing. Then, I was reading the Thyroid UK forum and something just clicked that I was STILL possibly under-medicated. 

    So, I spoke with my endo and started to make small increase in my dosages, making changes every 2-4 weeks. It is amazing how that one small change is now, 8 weeks later, making so much difference. I just added slo-release T3 back into the mix and feeling better every day. Fingers crossed it continues!

    Take care!

  • Okay, I have to go back and read this whole thing after I respond to this first cuz now I can't concentrate on it enough to comprehend what you wrote. You're not going to believe this, but I ALSO worked at CVS!!! At the time the Supervisors were Maureen and Clay. And then Maureen left and a blonde woman came in. I don't remember her name. I was only there about a year. I was a nightshift supervisor btt I left. I think I was there around 1990 ISH....At the time I was dating a guy named Andy Leete (small town and he was a couple years older than me so maybe he's familiar sounding to you!) WICKED small world!!!!

    Okay, now I have to read your response, lol. Wow....


  • You were at CVS about 7 years after me as I worked there while in my Junior/Senior years, right up until I left for college in 1985. My manager was a guy (don't recall his name). Andy Leete isn't familiar to me...more below

  • You know, now that you mention it, my mom's eyes water relentlessly and she was just diagnosed w/ 'dry eyes' and has drops. Could it be that my eyes are actually dry and they tear to compensate??? Tracy, at this point I have no clue what my body is or isn't doing. The numbness/tingling on my right side is only in my arm and in small moving spots on my face. So it's getting better. But dammit, WHAT WAS IT??? Why would somebody's body go numb and tingling on ONE side and not be a stroke? Random things like this is what my life is. And chronic pain. And apparently millions of other also....

    I am putting all these tests you've listed in my binder. And now I'm thinking, do I need an endo now also??? My grandmother had Thyroid problems which is why I wanted mine checked when my exercise and diet didn't help w/ the weight anymore. Initially I thought that was why I was so tired all the time. Then the hands and feet started w/ their night time itching and burning...then the derma graphic skin and hives. And then my stomach took a wicked turn for the worst w/ pain and heartburn. Then the cancer. Then the severe joint pain. The neck & head aches. The head pressure. Suspected arthritis. Bursitis. A kidney stone (that's still there after THREE years). A fatty deposit in my Liver. An uncooperative bladder. And I haven't been the same since. I thought mold in my old house? (it leaked horribly) Mold at work? (also leaks horribly! lol) Then allergies? Then Auto Immune...I'm grasping at straws it seems and 2 different docs tell me we may never find out.

    I feel as if all I do is complain. I'm am generally a silly happy person. I HATE that I've been reduced to this at times. Ugh!

    I am going to check out the Insurance Market Place. But the way it explained it last year, I didn't qualify.... something about payment percentage to pay or something. Darn it, I need to go back on and check it out again. Since my insurance has gone up it may be different now....But I also have dental & vision w/ it...and legal and life insurance etc....I need to investigate.

    Also, back to Chicopee, there was a highway entrance close to the top of that hill I spoke about. Gratten Street!!!! That's at the top of that hill. I had to Google my old friends Dad's Dentist practice. Which her brother Dan Thomas runs now. :) I miss New England. But the cold......Brrrrrrr!

  • Could very well be. Since I wear contact lenses, my eyes have been dry/teary for many years and I never thought much about it until they got REALLY bad. Now I can only wear my contacts for a few hours and I have to use drops and gels in them to keep from getting headaches. I also (recently) found out at my last ophthalmologist appt that my meibomian glands were clogged (these secrete oils onto the posterior lid margin when we blink and helps prevent rapid tear evaporation so when they are blocked, it isn't good) so I had to use warm compresses on my eyes twice daily to unblock the glands. I did that for two weeks and now I just need to do it every once in awhile. This worked wonders and now my eyes feel much better. 

    You do have a laundry list of symptoms! (as did I). I also had itchy feet for a time - no burning. Don't know what caused that. Like me, your symptoms seem so random and very confusing. I was tested for Lyme Disease, mono, as well as referred to a myriad of specialists (gastroenterologist, cardiologist, immunoligist, endochronologist, etc). You can read about my history in my user profile.

    I imagine that you are feeling very overwhelmed and your head is spinning about now. Try to breathe. The best advice I can give is to prioritize the worst symptoms and also, write down a list of questions and tests for your GP. Each step, whether it is a dead end or not, will lead you onto the next step. Some docs will brush you off and some tests will lead nowhere. 

    I too hated the person I was becoming. I was aggravated and upset at seemingly EVERYTHING. All I wanted to know is why I felt so awful ALL the time. I too am generally a very happy person, kind to everyone, and very outgoing. I felt like I was going insane. I even questioned myself thinking, "is it me? am I just making this all up?" I started to not want to go anywhere or do anything. I couldn't sleep and everything hurt. 

    Thank goodness I have a wonderful husband who reassured me that I was NOT crazy and supported me at my appts. He too got very frustrated! If I had never found the private endo (who listened to me), or never fought for the rheumatological testing, I fear where I'd be now. Even after diagnosis, it still has been a rough couple of years, dealing with meds and figuring out what causes flares, etc.

    THIS site is a lifesaver! Every day I learn so much and find the confidence to go further. There are highs and lows. I currently have hope since things seem to be on an upswing. 

    I know Grattan Street! My grandmothers house was on that street. OMG - your friend's dad was my childhood dentist! Dr. Paul Thomas! His practice was on Grattan! LOVED him! My sister still goes to that practice. I used to ride my bike to appts. 

    Trust me - you DON'T miss New England! We have SNOW today! It was 70 degrees just a few days ago. I so want SPRING!!!


  • Tracy, You have given me so much hope. And strength to persist in my little "quest" for answers. It feels so reassuring to know that I am not the only one and that as hard and frustrating as this journey may be, it's possible to get way or another. Thank you so much for being you and reaching out to me.

    And yup, Paul Thomas. I was great friends w/ his daughter Sue and her brother Dan, who now runs the practice. Her eldest brother Dave was not very nice. Don't know what happened to him! Spent many a night in that house. I looked at it online and it's still that same! It was always pretty. Nice family. Theyre the ones I used to vacation in Hyannis with. They had a beach house down there. It was pretty cool ;) I certainly couldn't have afforded to vaca there any other way!!! lol.

    Yah, 70+ today here. And in the 50's tomorrow. 30's tonight. Crazy weather. I was in NH and Northeast VT last September and (we moved to NE VT when I was 12. I moved right back to Spfld, Chicopee, & W. Spfld. When I turned 18!) In VA now for about 20 yrs, except for the few years I moved back there in between husbands, lol. No I do NOT miss the cold ;)

  • You're so welcome! Glad to help (if even a little) and it is fun to reminisce about a place we both knew!

    I'm jealous of your warm weather! Please send some of your sunshine up North! :-)

  • Ha ha, um, no. I'm keeping it!!!! lol. Now, when it's 110 w/ the humidity, i'll gladly send some your way!!!! ;)

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