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Still not diagnosed ... really need help


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Old 12-05-2016, 04:46 AM   #1
milenita
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Still not diagnosed ... really need help

Hello guys, I want to apologize in advance for the long post but I would really appreciate some insight and help, I am struggling really badly.
I am a 26 year old European woman and have been very sick for a year now. It all started last November after my gynecologist gave me a shot of progesterone ( due to high prolactin levels and my period disappearing). The very next day I woke up in panic,covered in sweat,felt like my head and body were on fire and with extreme nausea. I brushed it off to an allergic reaction. But then I got sick with what I thought was the flu-sore throat, sinus pain and chills. These 'heat attacks' continued almost every night ( still some nights i have them) and all day long I would feel as if I had the flu.I had staph bacteria in throat and nose and was put on antibiotics,they did nothing, changed a lot of antibiotics,nothing changed,but the cultures became negative.After a month feeling like this I developed joint pain in almost every joint in my body,BONE pain in my arms and legs,sometimes in ribs, low grade fever, stiff and achy muscles,still had the sore throat. I became bedridden because I was very very weak,fatigued, in pain. Visited a lot of specialists, nothing was ever found except slightly raised ESR levels, ANA, Anti CCP, RA factor were negative at that point. My health continued to decline,I got weird looking acne all over my back and face but doctors brushed it off to hormonal imbalance. For 2 weeks straight I had a sunburn redness on my face but my ANA was negative so doctors assumed rosacea. And actually I did put a rosacea cream on my face and it worked as long as I was putting it on. Still bedridden, my whole body hurt,even my veins all over my body became prominent and hurt,my joints started cracking with every move. I have so many symptoms that most doctors will say to me 'Go visit a psychiatrist,there is no illness with so many symptoms" . After 6 months of feeling very sick and so many new symptoms ( hair loss, poor circulation,muscle twitching and weakness, internal tremors,had painful lymph nodes under armipts without them being swollen but gone now, constant flu like feeling, low grade fever, chills,joint pain, vein swelling,sore throat, extreme weakness,dizziness, blurry vision, brain fog, insomnia, burning palms and feet, rashes on my hands that will come and go withing 2 hours time,mainly on my knuckles and sometimes on my arms) I also started getting blue nails and numbness in my fingers. Had all kinds of neurological tests, MRIs, blood vessels imaging ,heart,lungs checked..everything fine. Till I decided to do my own testing again and that time my ANA was positive:1:320. Anti CCP positive too ( for rheumatoid arthritis) so I was hospitalized in the rheumatology department to get a diagnosis. At that point my anti ccp was borderline and ANA was negative, they did capillaroscopy and diagnosed me with just Raynaud's . I had a skin biopsy,also called here 'lupus band test' and it was inconclusive, as they said:'' A little immunofluorescence here and there but not convincing enough for a diagnosis.''Also, my kidney creatinine in 24 hour urine was low, so my kidneys are not functioning very well, and blood creatinine is on the upper limit. But it wasnt't 'bad enough' to be taken seriously.
For the last 6 months I developed a very bizzare and scary symptom. I can't breathe because I feel as if I have an 'internal corset' around my ribs. This is a 24/7 feeling, I have shortness of breath, extreme weakness in my upper body muscles from that, bloated belly,extreme sweating. Also from that thightness in my stomach I developed daily diarrhea and acid reflux to the point I can't eat anything without having the nausea, diarrhea and 24/7 struggle to breathe. Had lungs checked with an x-ray and spirometry, everything is fine there and my diaphragm is not paralyzed thankfully( because it feels that way and it was a struggle finding a doctor who would not laugh at me and actually check my diaphragm with ultrasound). I also had a CT scan of abdomen with contrast,ultrasound and barium swallow x-ray which revealed only GERD. It continues to get worse, as if my internal organs are swollen, can barely breathe, even when not moving still can't breathe cause something is pressuring on my diaphragm, still have daily WC problems and constant nausea.It also started I guess pressing on my heart cuz I started getting heart palpitations that go up to 160 bpm.And my heart rate is always raised since I got ill last year. My resting heart rate now is 80-90,when I get up on my feet it goes up to 130. Another new symptom is for the last month and a half I have constant headache,which started with severe vertigo but the vertigo went away,now just have the constant headache,again MRI was done-nothing there, just found the vestibular system was affected a little.Things like ibuprofen do nothing for the headache. I keep getting worse but my ANA is now 1:100, other immune tests like DS DNA, anti Ro, anti Smith and etc. are negative, C3 and C4 withing normal ranges, CRP normal, slightly raised leukocytes and raised ESR, normal liver functions,blood sugar and no infections found. I am sorry for the very long rambling and excuse me if my english is not perfect, I am from Bulgaria, but I do feel like I am dying. I wanted to ask you a few things. Firstly, can it really be Lupus because I have a lot of text book like symptoms, but for me it is not in flares. Some symtoms are in flares, like the low grade fever, I can have it for 2 months, then not for the next month, and burning sensation and rashes are in flares but everything else is a constant thing.Also, for me it wasn't gradual like for people with lupus,having joint pain for a year then something else, for me it all just crashed on me and made me very sick. And I keep getting worse, I read people with lupus have flares and once the flare is gone they feel better,I don't get that. I feel awful all the time, I can't function or walk my dog, not due to the pain ( the pain is bearable) but due to the very sick feeling,breathlessness and weakness. Are there people with lupus that have similar symptoms that are constant? And do any of you have the weird breathing/thight feeling around ribs and what can it be?-that is the most frustrating symptoms I have and I am very scared. I really hope someone will read all of this. I am sure I forgot a lot of symptoms. The progesterone shot was the trigger for my unknown illness and from what I read, lupus is involved with hormonal/metabolic processes because it's no coincidence that mainly women in childbearing age get it and it gets worse after giving birth. That is the main reason I think I might have it. Btw, I forgot, my prolactin levels have been within the normal ranges for the last 8 months but still not regular menstrual cycles.I even had several blood cultures,so many tests for all kinds of viruses,parasites,tropical illnesses,all is negative.
Thank you in advance

Last edited by milenita; 12-05-2016 at 05:15 AM.

 
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Old 12-06-2016, 06:19 AM   #2
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Re: Still not diagnosed ... really need help

Hello and welcome. I'm sorry you're struggling so much, but we get that here! But before I move on, no worries about your English, please---it's great!

Could you clarify that last ANA result you described as "1:100"? I only ask because if it was done by the titer method, 1:100 isn't valid. (1:40, 1:80, 1:160, 1:320, 1:640, etc. are valid.) But if it's a single number (the IU method), anything over 6 (or so) is considered strongly elevated---in which case 100 would be huge, I would think.

I think you're right, that barring specific "ANA subtypes" being found, they aren't thinking lupus. Can you get the actual lab results, to check for all the subtypes run? Also look for names like antiphospholipid, anticardiolipin, and tests for syphilis*, which would mean that you've been tested for APS, the blood clotting disorder seen mostly in people who have lupus. (*I only mention this because syphilis test can be positive in people with APS!)

Was urinalysis done? It's essential, and not just vis-à-vis lupus. Then if anything is off, a 24-hour urine collection is typically the next step. (But I think BUN/Creatinine ratio in blood labs can go a bit off due to dehydration, for one thing...)

Were thyroid levels normal? Thyroid disorders can cause many of the same symptoms as milder lupus. So can adrenal disorders (and those are notoriously hard to diagnose).

Re GI problems, did your gastroenterologist look for Crohn's, Ulcerative Colitis, Celiac, etc.?

Even though your symptoms worsened after the progesterone shot, I don't think it was *necessarily* the trigger, in that you already had something amiss = your periods stopping. Have you looped back to your GYN, to discuss further what medical conditions can cause periods to cease, in light of all the appointments and tests you've had since then?

Re lupus band test, I had 3 that showed vivid, dramatic linear bands, like your doctors described how a "positive " will look.

I guess the sum of what I'm wondering is whether enough AI's were considered, such as the AI's seen in gastroenterology, endocrinology, etc. This year, I had two friends dx'ed with rare AI's. They both started with lung issues and ANA's of 1:1280 and greater, yet AB's associated with lupus never showed up... because neither has lupus. (Final dx'es were antisynthetase syndrome and microscopic polyangiitis.)

I'll stop here for now & hope that others chip in, too. We'll look forward to hearing more. Meanwhile, sending all my best to you, V

 
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Old 12-06-2016, 08:55 AM   #3
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Re: Still not diagnosed ... really need help

Thank you very much for the reply. My ANA was 1:320 for several months,then the lab showed 1:100,which was 'borderline positive'', I guess it is equal to 1:80. Other immune tests I've done:
anti-RNP/Sm
anti-Sm
anti-SS-A/Ro
anti-SS-A (Ro 52) recomb.
anti-SS-B/La
anti-Scl-70 (
anti-PM-Scl (PM)
anti-Jo-1
anti-Centromere B Ab
anti-PCNA
anti-dsDNA
anti-Nucleosome Ab
anti-Histone Ab
anti-Ribosomal P
anti-Mitochondria M2 Ab
ANCA

all negative

Also had muscle testing EMG and creatine kinase- also negative
I haven't had the tests for Antiphospholipid syndrome, but I will go and do them. The only abnormal thing I had before the progesterone shot was the period irregularity, nothing more. As for the stomach problems,I only had an abdominal CT scan and Barium X-ray but I will insist on upper endoscopy. My lung function tests are fine and as for the imaging I only had chest x-ray, 3 to be exact and they all came back fine. I actually don't have chest problems, the breathing thing comes from the tightness around my upper abdomen. So for now the only tests that came back abnormal are: raised ESR- it flunctuates from 28 to 41,slightly raised leukocytes around 11, 24 hour creatinine clearance - 60 ( the norm is 88–128 ml/min)-which is low, but wasn't addressed because my serum creatinine is 84 ( the limit is 83).It isn't 'bad enough' for the doctors. I want to ask about the lupus band test? They said it isn't negative but it isn't strongly positive either. What does that mean? I mean if there is something,even a little, it's still there, right?
TSH, T3 and T4- normal and also ultrasound of thyroid-normal. haven't had a syphilis test. I am only diagnosed with Raynaud's for now, which I developed when everything started, haven't had it before, so that makes me think the whole thing is autoimmune. I also have autoimmune diseases in my family, My sister has Juvenile arthritis, my grandmother has RA and my aunt has Hashimoto's, so I won't be surprised if I have Lupus or some type of vasculitis. I don't know how vasculitis is diagnosed. My neurologist said that if I had systemic vasculitis it will show on the MRI of the blood vessels in the brain,I had that with contrast and it was clear. Abdominal CT also with contrast-nothing there either. I don't even know what test to do anymore, except the upper GI endoscopy, of which I am terrified but I will do it.I also had x-rays of my knees and wrists-no changes there,but I do have positive anti CCP-37 (norm is 0-20) which screens for RA. I have an appointment on the 27th with another rheumatologist and I will redo some of the testing before that to see where my ESR, anti CCP and ANA stand now, because they change,also will do the ANtiphospholipid thing, because I suffer from chronic headaches.My skull hurts to be exact.
Thank you again for replying, it means a lot.

 
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Old 12-06-2016, 09:57 AM   #4
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Re: Still not diagnosed ... really need help

You are most welcome. I'm very glad you're trying another rheum, btw. Let us know how your 12/27 appointment goes, OK?

Re ANA numbers. I actually think the iU system is quite different than the titer system. You could ask new rheum what that "100" number means.

Also, you said you'd taken antibiotics. Was anti-ss-DNA also tested? That's the one that is positive in DILE (drug-induced lupus), along with anti-histone.

Re vasculitis, I think there are multiple kinds and that they "test differently". Some produce positive ANCA in blood labs, others don't, unfortunately. I became aware of that due to a dear friend's very bad year. Her first clues were symptoms (lungs), then when it hit her kidneys hard, her kidney blood serum values and urinalysis markers spiked horribly---at which point the doctors called for kidney biopsy---which then proved MPA. i.e., there's no autoantibody blood test for the form of vasculitis she has: instead, her kidneys had to fail to the point of showing up on blood labs & urinalysis.

Re gastro tests. Was that barium test just a "swallow test"? What about the *lower* GI diagnostic test, meaning colonoscopy? That should prove or disprove a number of things. If you haven't had one yet, no need to panic: today colonoscopy is much easier than in the past.

Lupus band test (LBT). My understanding is that lupus is the only condition in which circulating "immune junk" that's detectable by known "stains" pools between dermal & epidermal layers. One of my lupus hardcovers describes it in detail. Five stains are used, and if all 5 are positive, that confirms lupus to a certainty of greater than 99%. Maybe your doctors saw reactions to one or more stains, but not to all 5, thus they can't call it lupus... or not yet, anyway?

Family history. Same here. In mine, that I know of, we have one lupus (me), Hashimoto's (sister), Ulcerative Colitis (cousin), Type 1 diabetes, etc.

Further resources. One of the "sticky posts" (permanent info posts) has some suggestions, in case you want to read more before your 12/27 appt. (I found library books contain far more info than you can find by browsing.)

We're here, so touch base any time, OK? Sending hugs!

 
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Old 12-06-2016, 11:00 AM   #5
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Re: Still not diagnosed ... really need help

Thank you a lot, you are amazing! I am going to read the sticky note thread now.
When I said I wanted to do upper GI endoscopy, I mean because my symptoms are in the upper abdomen, but yeah..it doesn't mean the colon is not affected. May be I will have to do the colonoscopy and gastroscopy together. The barium swallow was only a swallow x-ray which revealed GERD, they were looking for Hiatal hernia,because my symptoms are similar to hiatal hernia.It really feels as if I have something around my upper abdomen,like a corset, that pushes on my diaphragm and it's hard to take a full breath,also nausea and diarrhea. I am going to get an appointment with a gastroenterologist again. I have been to 3 for now, they press on my stomach and say that it is not even bloated, but it is. I am a little overweight,may be that is why they can't feel it.The weird part is, I don't have any pain in my stomach, just very very uncomfortable.But when it gets really worse I have chills and low grade fever. Overall within these 6 months the tightness and symptoms around it are getting worse.
The hard part is that I have to go to a different specialist for every symptom, and by doing that noone gets the whole picture.

Last edited by milenita; 12-06-2016 at 11:02 AM.

 
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Old 12-06-2016, 12:21 PM   #6
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Re: Still not diagnosed ... really need help

I don't know if that is worth mentioning to the rheumy because when I mention antidepressants they instantly brush it off to my anxiety disorder and send me on my way.But there was one doctor who mentioned that it's not uncommon for lupus to start with mental problems.
In 2012 I developed a very severe anxiety disorder, when I say severe it was really really bad,it was a pathological anxiety with so called 'depersonalization disorder', constant panic attacks to the point I couldn't function normally. That all happened out of the blue,it was well controlled with antidepressants.I had no physical symptoms or worry thoughts about health. So I was taing antidepressants for a long time, stopped, then started again.And my psychiatrist at the time advised me to check my prolactin levels because antidepressants tend to raise prolaction. That is why my prolactin was raised a year ago and I also have microadenoma in my pituitary gland,it is still the same, very small,not changing and not active and the prolactin is now normal. My menstrual issues are due to PCOS but at the sime time all my hormones are in normal ranges. That was the whole reason for that progesterone shot. I am no longer taking any drugs,and no panic disorder thankfully.
Also, the one and only physical health issue that I had the last several years is prior to PCOS(which is in my left ovary) I had issues with that same ovary. It would swell a lot and fill up with fluid.Every time that happened I would get pain in my ovaries and pain in my knees.I was often put on IV antibiotics that made it go away, but then 4-5 months later it would come back and again with the knee pain.That is the only physical issue that I had.
And now,after I got ill I noticed I have a lot of allergic reactions, mostly to antibiotics. I can't take antibiotics like Augmentin (penicilin) or sulfa drugs, I get weird asthma like attacks when I take them. I haven't had that issue before (a year ago for example). I don't know if that information is valuable but I was just thinking out loud.

 
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Old 12-06-2016, 12:28 PM   #7
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Re: Still not diagnosed ... really need help

Hi. I asked about the colonoscopy---to check for gastro AI's such as Celiac, Ulcerative Colitis, and Crohn's---because you'd listed diarrhea.

Are you currently taking meds that might be playing a role in some symptoms?

Before I first saw my 2nd (and current) rheum, his staff asked me to fax in advance a lifetime medical history, in my own words. By using sentence fragments & bulleted lists, I got it to less than 1 page (doctors love brevity). I made the list chronological in order of appearance by listing each symptom only once, dating its onset, then adding remarks to convey frequency, duration, severity, etc. Then inserted, in proper date order, meds & labs (at least the date for each set).

Speaking of lifetime medical history, you could also look at the "sticky post" that lists so-called "alternative criteria", by scrolling down past the criteria. These things happen often, earlier in life, in people who later develop lupus. (I matched on almost all.) The list was authored by one of the top rheums in the world, the man who did the breakthrough work on APS (antiphospholipid).

There's also a "sticky" on rashes.

I agree, they all need to see "the whole you". And if you write a great, short & concise summary, that could also help force that to happen. I see you as a very smart patient---way ahead of where I was at your age knowledge-wise---and I believe that will help you, sooner or later, to get answers and help. We'll watch for your updates. More hugs!

 
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Old 12-06-2016, 12:44 PM   #8
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Re: Still not diagnosed ... really need help

Responding to your new info about meds. Yes, definitely include. One of my hardcovers says that people with lupus often can't tolerate sulfanomides (but I don't know what the deal is with them) and that penicillin bothers a lot of lupus patients, too.

Re pituitary microadenoma. I've known two people with something in that ballpark. One had hideous headaches until, finally, he had surgery. The other, a woman, had PCOS, then sudden unexplained weight gain.; she also had surgery. But I'm guessing your neurologist has covered this thoroughly? Bye for now, V

 
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Old 12-06-2016, 01:20 PM   #9
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Re: Still not diagnosed ... really need help

Yes, we covered that with my neuro, the microadenoma is still there but is calcified, not growing. After antidepressants I also can't lose weight. AT ALL. I was a very thin girl prior to my anxiety issues.I suffer headaches but it's not related to the adenoma, because I have had it for years and the headaches just started 1,5 months ago.
I am now looking at the sticky note thread and I can relate to some of the symptoms there. For instance, insects looooove me, I was even bitten by a huge hornet 3 months ago but thankfully didn't have severe reaction,just the normal rash and swelling.
I have always had claustrophobia but since being sick it is extreme.I never had issues with MRI machines till this disease happened,now it's awful, I can barely go through MRI exam and I never use elevators. When I had the severe anxiety disorder I had agoraphobia as well, couldn't get out of the house.
I have the normal CRP and high ESR and also the family history of autoimmune disorders. I have the sulfa drug allergy but didn't have before. Also the dry eyes, but not to the extreme as in Sjogren's.I mean I have tolerable dryness in eyes and mouth. I think I read somewhere that people with autoimmune disorders also have low vitamin D and it's also some sort of an 'alternative diagnostic criteria' but I haven't checked my vitamin D levels.
I really appreciate that you are helping me figure this thing out. Thank you A LOT. Hugs from me too

Last edited by milenita; 12-06-2016 at 01:21 PM.

 
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Old 12-06-2016, 03:38 PM   #10
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Re: Still not diagnosed ... really need help

I just re-read everything. It strikes me that your doctors are taking you seriously, you've had a lot of tests, and that they've ruled some things out. So if you can find a way to organize your notes to make everything brief and concise, your new rheum hopefully can snap into action even faster.

I imagine it's possible that you are still "a work in progress". Or maybe you *have* had more meaningful AI markers in your blood on & off, but your blood draws just weren't done at a "revealing" time...? Guess time will tell, and quickly, I hope. Touch base when the mood strikes! Bye for now.

 
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Old 12-07-2016, 05:54 AM   #11
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Re: Still not diagnosed ... really need help

Quote:
Originally Posted by milenita View Post
After a month feeling like this I developed joint pain in almost every joint in my body,BONE pain in my arms and legs,sometimes in ribs, low grade fever, stiff and achy muscles,still had the sore throat. I became bedridden because I was very very weak,fatigued, in pain.
Hey there, sorry to hear about your pain. Many of your symptoms remind me of my own, and I have Fibromyalgia. I take antidepressants, and Lyrica as well as amitryptilline for it. I get a lot of joint pain, widespread pain, migrains, weakness, and flu like symptoms, irritable bowel... the sky is the limit... I don't know if you possibly discussed that with your doctor. There is no blood test to diagnose it. So often times, they rule out everything else first.

Good luck.

Last edited by SummerJoy; 12-07-2016 at 05:57 AM.

 
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Old 12-08-2016, 11:11 AM   #12
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Re: Still not diagnosed ... really need help

hey SummerJoy,thank you for replying. I have a lot of different symptoms apart from the pain,so I don't think it's fibro, I don't have the tender points.
Today again I woke up with a rash on my hand and it was itchy, went away after an hour and now ( it's evening here ) I have a mild fever again and feel as if I was beaten up with a hammer. I don't really have severe muscle pain anymore, it was a transient symptom for several months in the beginning of my illness (may be a flare). I have pain in bones and joints,though... all the time, muscles hurt more like a flu-like type now and are very weak.
I am exhausted all the time but I tend to get these ''extreme fatigue attacks'' that come out of the blue and I can't move. Yesterday evening I got one and felt really sleepy (uncontrollably sleepy) and checked my blood pressure-it was low-95/60, mine usual is 120/80. Also have pain in my heart but I visited a cardiologist 2 weeks ago, he did echocardiography and everything's fine. With these fatigue attacks I also get a 'drunk' feeling, very out of space, really weird..

 
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Old 12-08-2016, 12:11 PM   #13
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Re: Still not diagnosed ... really need help

I have read most of your post. It sounds like several things. For one, doctors don't everver think about sero-negative auto immune diseases. It also sounds like schogrens , not sure of spelling, plus there is a problem with your thyroid. All of these go hand. You need a rheumatologist who isn't afraid of sero-negative diagnoses and an endocrinologist. Usuallylly losing hair indicates hyperthyroid. I am not a doctor but I can relate myexperiences. . It's rough...good luck to you.

 
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Old 12-09-2016, 11:13 AM   #14
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Angry Re: Still not diagnosed ... really need help

kittyhawkchild, thanks for the insight.
I had been to several endocrinologists and they all say that my symptoms don't sound like an endo illness, had blood work done for thyroid several times,all is good there and also had an ultrasound f thyroid. As for Sjogren's I don't have the typical dryness symptoms, I do have dry eyes and mouth every now and then but it's very mild. Most of my symptoms point to lupus. But if lupus is in flares, I have been in an year long flare then
Some of my symptoms are in flares,the low grade fever, pain in different parts of my body ( like today I have sore breasts and sore inside of my elbow,low grade fever,cold chills,metallic taste in mouth and rash on the knuckles of hands), rashes are in flares I think but everything else is constant. By everything else I mean: malaise,flu-like feeling, extreme fatigue and weakness,weak muscles, nausea,this strange tight feeling in my upper abdomen with shortness of breath,heart palpitations,stomach issues,joint pain,mild Raynaud's and then list goes on and on...it's a 24/7 misery to the point I can't function at all, like I said above, it's even hard to walk my dog because I am so weak and out of breath.It's sooo scary. My next rheumy appointment is on 27th. Really hope she will help me this time.

Last edited by milenita; 12-09-2016 at 11:22 AM.

 
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Old 12-09-2016, 01:48 PM   #15
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Re: Still not diagnosed ... really need help

Have you had your b12 and b1 levels tested? Many doctors overlook this and deficiencies of these vitamins can cause many of the symptoms you mention. If you have not had tests for this, get tested before starting any vitamin supplementation as you want to get an accurate reading. Good luck next I hope you start feeling better.

 
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