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    Old 03-15-2014, 08:53 PM   #1
    artgeek
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    Vague Symptoms, No Diagnosis, Help if you can :)

    Hi,

    I am hoping for some insight as I've had a lot of vague symptoms and have had a long, difficult road to a diagnosis that makes sense. It's tough waiting for the next appointment and the next test indefinitely.

    I'm seeing my PCP, a neurologist, and a rheumatologist. I saw the rheumatologist several months ago...

    It started around May 2010 (I was 22) when I would wake up in the morning with my feet swollen and often numb/tingly. Then I would get out of bed and feel very stiff for a while. I also had a lot of fatigue at this time. I assumed it was because I was overweight and I lost 40 lbs by eating less and exercising regularly. The symptoms kind of went away as my health improved so I thought "hm, no problem!"

    Then around September or October 2010 I started getting infections a lot and my body couldn't fight them off. I ended up in the hospital twice with sepsis, once from a kidney infection and then I got an awful infection after having a ruptured ovarian cyst. I don't know why, I just know it happened.

    Since then I haven't really been the same. Off and on my feet would hurt and feel tingly, I would have terrible fatigue, and although I rarely got sick, when I had any kind of infection (respiratory and bladder) it completely took me down.

    Over time, the pain (which feels like it's my joints) then crept up to my ankles, knees, and hips, but was always worst in the morning, came in flare-ups and then went away, and is accompanied by stiffness (especially in the morning). I still assumed it was my weight. Then I started having odd dizzy spells which were troublesome. I still had terrible fatigue.

    Finally I saw a doctor about it. I was tested for diabetes and my thyroid was tested. The first GP i saw said "Well, your tests are normal and this is all a side effect of your birth control". So I stopped taking the pill and relied on other methods. By this time (2012) I was married and wanted children anyway, so we decided while we'd try to prevent pregnancy it wouldn't be the end of the world if I got pregnant...

    Then I did... and had a miscarriage early on. Then all Hell broke loose if you'll pardon the expression. This was May 2013, and I was 25. My body hasn't been the same since.

    I started having the joint pain quite regularly. Now it was everywhere... feet, ankles, knees, spine, hips, and all the little joints in my hands. They felt swollen sometimes and the stiffness in the morning lasted anywhere from 45 minutes to 3 hours. It was especially bad when the cold weather hit in October. Also, if I got so much as the sniffles it would flare up... for example, if I was around someone who was very sick... The dizzy spells came back with a vengence, and this time they were worse.

    So the joint pain started back in September and my right eye started twitching regularly. I thought little of it, assumed the joint pain was because I'm overweight (5'5" 200 lbs at this time). and the twitch was because I needed new glasses (which I got immediately). My hands and feet were the worst, and my hands would get very stiff at times.

    In October my "dizzy spells" turned into more than dizzy spells. I started slurring my speech and having a lot of difficulty getting words out, with gaps in my speech. I thought I was having mini strokes at first, but I wasn't. Sometimes I couldn't speak at all for a period of time. My hands would go numb, and my legs would go numb at times. Sometimes I would lose the ability to move one leg and have to sit there for a while until I could move it again. Then when I could, I would drag my foot when I walked. I also started seeing these colorful kalaidascope quilt looking geometric patterns covering my whole field of vision... OR I would see rainbow outlines on objects, OR several large floating circular blobs of translucent color at once. I would get very confused when this happened and feel like I needed a large glass of water and a long nap. The fatigue got bad again. I started having a different kind of pain deep in my muscles in addition to joint pain.

    I switched to another GP who was recommended to me by a family member.
    This time her first suggestion was that I was depressed as that can cause physical symptoms. I told her I am a very happy person and couldn't fathom being depressed, or that symptoms this severe could be caused by depression. I felt dismissed, but she decided to do an MRI which came back with a "normal" report. She wanted to refer me to a neurologist. Because the whole thing started with joint pain, stiffness, and swelling, I wanted to see a rheumatologist as well. She also ordered an MRI without contrast, which came back as "normal" on the report (although if you look at the images there are white spots, which are black on the other sort of scan (I forgot which is which), but not the sort you would see in MS from what I've read. I know I'm not a radiologist, I just thought it might be worth mentioning.

    After the normal MRI came back the GP said I had migraines (even though they didn't usually occur with headaches) and that was why I was slurring my speech and having limbs go numb, etc, etc...

    I saw the rheumatologist who barely asked me about my symptoms, did a physical examination on a day I wasn't swollen or stiff, took x-rays, and ran a few blood tests... here is what he did...

    *X-rayed my feet and ankles
    *X-rayed my knees and hips
    *Did NOT x-ray my hands although they were one of my primary complaints.
    *Ran tests for kidney and liver function
    *Ran a single rheumatoid factor test and a single ANA test.

    After looking at the x-rays he said I had Osteoarthritis in my feet, hips, and lower lumbar, and that it was caused by being overweight. When the blood tests came back they called me and said everything was normal and negative. He prescribed an NSAID for my "osteoarthritis", which has helped tremendously, but if I don't take it for two days I end up in agony.
    When I got a copy of the tests they said Normal liver & kidney function, negative ANA, and RF of 9.

    I still don't understand if RF is normally in everyone's blood or if that is remotely significant, but I was kind of bothered that he didn't run any other tests and said "If you had inflamation I would be able to feel it with my hands, and you don't."

    When I came back in for a follow-up they actually x-rayed my hands at my request. I requested it because my pinkies and ring fingers were curling up and getting stiff with swollen joints, and I had arthritis in my pinky fingers and along the outside edge of my hands, but he brushed it off and said it wasn't important because there's no erosion on the bone. He then tested me for celiac disease, which came back negative and he said it was a good idea to avoid gluten anyway. I don't really get that, but I do it and for whatever reason I've lost some weight effortlessly so I don't mind eating gluten free without an explanation as to why I'm doing it.

    So in December I started having the spells again and this time my head would shake and I would "check out" for a while. I didn't fall to the ground or anything, but I would be mentally not there with my eyes open and my head shaking back and forth. Then it started happening with my head, arms, and legs shaking/twitching, and afterward I would always need a huge glass of water and a nap. The spells became more and more seizure-like. My left thigh went numb (which the neurologist says is myalgia paresthetica/caused by a "pinched nerve" as she said, which she also blamed on my weight.

    I had an EEG but haven't heard back yet on whether or not it showed epileptic brainwaves. I was told I had to wait til my followup to get the results. I also saw an opthemologist and my eyes were normal.

    So since December I've been dealing with what little joint and muscle pain the NSAIDS don't take care of, muscle spasms, what we believe to be seizures about once a week (probably complex partial), vision problems, a few odd rashes, occasional Raynaud's, severe fatigue, episodes of slurred/difficult speech, numbness and tingling in my hands and feet, and constant numbness in my left thigh with occasional stabbing pains (believed to be caused by a pinched nerve).

    I was just wondering if anyone had ever experienced anything like this or knows what it sounds like. Does it sound like possibly an autoimmune disease? I want to know if I should seek a second opinion or go along with the assumption that all my problems are because I'm fat.

    I've lost a job because of the seizures and have to work from home for less money. It's seriously cutting into my life :/

    Thanks so much to anyone who has taken the time to read this very long post. I appreciate anything you have to contribute.

     
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    Old 03-16-2014, 05:43 PM   #2
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Hi & welcome. I'm really sorry for your extreme issues. I actually don't see them as "vague", I see them as seriously neurological. I've known several people with epilepsy AND I'm merely a patient (lupus), but from the little I know, I think some forms of epileptic seizures can cause partial paralysis. If I had the symptoms you have, I'd want epilepsy thoroughly investigated; and say your EEG is normal, I'd want more sophisticated tests next.

    As for the main rheumatological AI's, I believe your rheum ruled out lupus given negative ANA, no kidney issues, no high fever (a symptom of CNS vasculitis), etc.; and that he ruled out RA because ANA and RF were negative & no evidence of erosive joint degeneration was found. I believe that while lupus can cause seizures, in these patients doctors see indicators *other than* the seizures themselves, such as elevated ESR, low complements, very high anti-ds-DNA, etc.

    The problem with AI tests, though, are that they're snapshots. Autoantibodies can flare and recede, so trapping them is akin to hitting a moving target and can require multiple rounds of tests and much patience. If your joint pain persists & doesn't respond to NSAID's, or if you develop additional symptoms, hopefully you could have a 2nd round of AI tests done.

    In the main, what the rheum did & said makes sense to me, but there's one AI condition that I can't tell whether he considered: antiphospholipid syndrome (APS), a blood clotting disorder seen mainly in people with lupus but very infrequently seen "standalone" (meaning in otherwise healthy people). There's a "sticky post" (permanent info post) on the lupus board listing symptoms, tests, etc. Look for the "stickies" right above the user threads. Once you read it, feel free to post more questions.

    I wish I had more to offer, and I sure hope something useful comes out of your EEG. When is your follow-up appointment? Sending best wishes & hopes that you get answers & help soon, sincerely, Vee

     
    Old 03-16-2014, 11:44 PM   #3
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    I agree that your symptoms are severe and absolutely should not be attributed to your weight. IMO, that assumption by anyone is ludicrous. It seems easy for Drs to blame the patient, when the Dr cannot figure out what is wrong. Here is my take on all this: I think you most likely do have an autoimmune disorder, based on the widespread joint pain and stiffness, severe fatigue, etc. To rule out RA, you should have an anti-CCP test done on blood, plus a sed rate, CRP and complement levels for inflammation. Any Dr that thinks he/she can "feel" inflammation is suffering from delusions of grandeur! Yes, you can feel heat and crepitus in joints, but that is not always present with inflammation. The seizure-like episodes versus migraine episodes without headache is a common dilemma, and can be sorted out easily with an EEG. The visual disturbances sound like migraine auras, and it is possible you are having both. The numbness and tingling in extremities could very well be caused by low Vit B12 and/or folic acid and that should be measured in your blood. If low, supplementing those might improve your symptoms. These levels are frequently low in autoimmune disorders. You should have an ANA panel done during a flare, as the antibodies will be more likely to be picked up then. The panel includes an ANA plus subtypes like anti-dsDNA, anti-Smith, anti-RNP. We really have to stick up for ourselves and fight for what we need, and not believe those that would blow off our life-altering problems as related to weight, lack of exercise, etc. Birth control can actually worsen some AI disorders, like lupus and anti-phospholipid syndromes. The latter can cause miscarriage and fetal loss later in pregnancy, and can also be tested for in the blood. So there are many things that can yet be checked in you. Be sure you have a urinalysis done too, looking for blood or protein. People with autoimmune disorders frequently get infections too, as the immune system can be both overactive against one's own cells, but deficient against bacteria and viruses, so you exhibit many symptoms of an underlying AI disorder. A CBC is important too to look for anemia and low white cells or lymphocytes. A CK (muscle enzyme) should be measured during episodes of severe muscle aching or weakness. Good luck! I hope your Drs start taking this more seriously!

     
    Old 03-17-2014, 07:47 PM   #4
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Thanks to both of you. I appreciate you taking the time to read and respond.

    What bothered me about the rheumatologist is that, well aside from him and most of his nurses being pretty rude, he didn't do the anti-CCP, sed rate, or any other tests.


    The last time I got sick again I had been pretty active... I was running, walking, lifting weights, and doing yoga regularly. I exercised usually 5 days a week, and then one week I just couldn't. So for me to go in and have them tell me everything is because I'm fat and I need to do some activity (as if that's obviously a foreign concept to me). One doctor felt the need to educate me that sodas have calories. I'm like yes I know that braniac, and I don't drink them. I get it, some people are overweight because they drink sodas and don't move, but it's bothersome when doctors assume that's the reason for everyone who is overweight. This part is clearly just a rant, so I apologize.

    My symptoms are quite obviously neurological now, but they didn't start out that way. I think the issue is that there is no ONE thing that explains everything that's going on with me (unless it's an autoimmune disorder). So there's the possibility that I have more than one thing wrong.

    If I don't have epilepsy I'm going to be quite confused, because it could explain quite a few of my problems...

    I even wonder if, if I had nocturnal seizures, could that be the reason I'm waking up sore and stiff, or the reason I'm always tired, or if my pain isn't really in my joints at all but just feels that way when it's really nerve pain... but that's not a question for this board, I know.

     
    Old 03-19-2014, 04:14 AM   #5
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    You could be sore and stiff in AM from arthritis often caused by autoimmune disorders. Nocturnal seizures can do the same thing. Both can make you feel very tired. You should have recent blood tests including anti-CCP, sed rate, CRP, ANA, urine test, CBC, if you haven't had them in past 6-12 months. I would just ask the rheum to do them, or if he and staff were rude, find another one who is nice and will check you out thoroughly!

     
    Old 03-20-2014, 09:02 PM   #6
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Quote:
    Originally Posted by ladybud View Post
    You could be sore and stiff in AM from arthritis often caused by autoimmune disorders. Nocturnal seizures can do the same thing. Both can make you feel very tired. You should have recent blood tests including anti-CCP, sed rate, CRP, ANA, urine test, CBC, if you haven't had them in past 6-12 months. I would just ask the rheum to do them, or if he and staff were rude, find another one who is nice and will check you out thoroughly!
    Thanks,

    I had the tests about 4 months ago (RF & ANA only), but made an appointment with a different rheumatologist just in case since it takes 3 months to get into a new one around here. The appointment was April 2nd and I was just wanting to gauge if I really need to go now that it's getting closer... I mean, if the first rheumatologist was right, there's not really a reason for me to see one at all, so I might as well follow up with the rude doctor (I'll have to drive an extra hour to go to anyone else). Then I could just hope the neurologist figures out the root of my problems... or I could go, have someone drive me (since I can't drive due to seizures) an hour and a half to get to the closest rheumatologist who isn't the one I already saw... it's just so many appointments, so many tests, and I'm trying to keep living my life as much as I can. :/

     
    Old 03-21-2014, 10:24 AM   #7
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Hi. Did you actually SEE and GET COPIES of the labs done by Rheum #1? I know you mentioned RF and ANA, but were those just two key tests among many, reeled off by the rheum's assistant during a fast phone call? (My specialty labs run 3-1/2 pages long, and the assistant would never read them in their entirety over the phone.) Also, did you get copies of standard labs (CBC, metabolic panel, etc.) that he might have been sent by your other doctors? (Things like sed rate, CRP, etc. might have been omitted by the rheum IF very recent results for them were available.)

    My thought is, without seeing the full reports, you really don't know how thoroughly you were tested for lupus, for RA, etc. Maybe Rheum #1 did a far more thorough job than you realize---and maybe not. I'd probably want a better feel for that before seeing another rheum so soon---but, really, yours is the only opinion that counts here!

    When will you get your latest EEG report re: possible epileptic seizures?

    I really hope something falls into place soon!

     
    Old 03-21-2014, 03:31 PM   #8
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Quote:
    Originally Posted by VeeJ View Post
    Hi. Did you actually SEE and GET COPIES of the labs done by Rheum #1? I know you mentioned RF and ANA, but were those just two key tests among many, reeled off by the rheum's assistant during a fast phone call? (My specialty labs run 3-1/2 pages long, and the assistant would never read them in their entirety over the phone.) Also, did you get copies of standard labs (CBC, metabolic panel, etc.) that he might have been sent by your other doctors? (Things like sed rate, CRP, etc. might have been omitted by the rheum IF very recent results for them were available.)

    My thought is, without seeing the full reports, you really don't know how thoroughly you were tested for lupus, for RA, etc. Maybe Rheum #1 did a far more thorough job than you realize---and maybe not. I'd probably want a better feel for that before seeing another rheum so soon---but, really, yours is the only opinion that counts here!

    When will you get your latest EEG report re: possible epileptic seizures?

    I really hope something falls into place soon!
    You make a very good point, and I'll answer your questions as thoroughly as I can. They did give me a printed report of the labs run but they were not very detailed... does that mean there might be another report I'm not seeing? I was led to believe they gave me the full report. Basically this is what they say in a nutshell:

    The first ones that were sent out to a lab go like this
    --My Info here--

    TSH
    Status: F
    TSH 1.81 mIU/L
    Flag: N
    Reference Range > or = 20 years 0.40-4.50

    ANA IFA Screen W/Refl to titer and pattern, IFA
    Status:F
    ANA screen, IFA: Negative
    Flag:N
    Reference Range: Negative

    Rheumatoid Factor: 9 IU/mL
    Flag: N
    Reference Range: <14

    Then info on the lab and --End of Generated Report--

    Then the ones they did there (which I was under the impression these were the liver & kidney function tests) say:

    --My patient info--

    Test: BUN
    Result: 14.
    Normal Range: 7.-18.
    Normal
    Units: mg/dL

    Test: CREAT
    Result: 0.88
    Normal Range: 0.60 - 1.20
    Normal
    Units: mg/dL

    Test: ALT
    Result: 12.
    Normal Range: 5. - 30.
    Normal
    Units: U/L

    Test: AST
    Result: 11.
    Normal Range: 7. - 31.
    Normal
    Units: U/L

    ________________________________________ ________

    I think the general idea was that I didn't have insurance and he didn't want to run more tests than I could afford, so I think it's perfectly plausible that this was all he did.

    He even uttered the words "Maybe after the first of the year, when 'Obamacare' kicks in we can send you up to (I don't remember where) for a more complete workup." Of course when I had insurance and came back, He didn't seem any more willing to do more tests.

    ________________________________________ _______

    As far as what has already been done before I saw him, here are the tests I have had:

    TSH
    A1C
    Brain & Stem MRI without contrast

    And... that's all.

    My GP didn't want to do the RF/ANA herself because, she said, the Rheum would want to do it again anyway so I might as well just pay for it once.

    ________________________________________ _______

    As far as the EEG, I haven't heard yet. Doctor is still on vacation until next week. I go in Wednesday.

    I had a "spell" during the EEG and then she stopped the strobes, so who knows...

     
    Old 03-21-2014, 05:08 PM   #9
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    OK, it makes sense now, that your rheum & GP just focused on certain key tests to limit your fees. But since your neurology fl'up is 3/26 and your Rheum #2 appt. is 4/2, why not decide AFTER your 3/26 neurology appt. whether to keep your 4/2 rheum appt.? That would be a week's notice to the rheum if you decide to cancel, which seems utterly fair to me. We'll look forward to your updates.

    Last edited by VeeJ; 03-21-2014 at 05:09 PM. Reason: correction

     
    Old 03-21-2014, 07:23 PM   #10
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Quote:
    Originally Posted by VeeJ View Post
    OK, it makes sense now, that your rheum & GP just focused on certain key tests to limit your fees. But since your neurology fl'up is 3/26 and your Rheum #2 appt. is 4/2, why not decide AFTER your 3/26 neurology appt. whether to keep your 4/2 rheum appt.? That would be a week's notice to the rheum if you decide to cancel, which seems utterly fair to me. We'll look forward to your updates.
    Thanks. That is a good point. Hopefully there will be something at the appointment to guide me as to that decision. And when I find something out I will post.

     
    Old 03-26-2014, 06:13 PM   #11
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Just as an update if anyone is following I am going to sleep on the decision as to whether or not to keep the rheumatologist appointment and call tomorrow if I decide to cancel. I have to have more testing to find out if I have epilepsy, including a video EEG in the hospital for a few days (not looking forward to it). I think with all the time that is going to consume, plus the cost of all the neurologist appointments, everything else may have to go on the back burner. It hasn't really be bothering me much in the past month anyway.

     
    Old 03-27-2014, 05:45 AM   #12
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Re upcoming epilepsy tests, good luck. Let us know how it goes. Will keep my fingers crossed that you learn something useful, V.

     
    Old 04-06-2014, 10:33 AM   #13
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Quote:
    Originally Posted by VeeJ View Post
    Re upcoming epilepsy tests, good luck. Let us know how it goes. Will keep my fingers crossed that you learn something useful, V.
    This rheumatologist was way better and took my concerns seriously instead of writing them off. He said there were 5 joints quite swollen in my hands and did another set of hand x-rays. I don't remember what they were all called, but I remember "metacarpalphilangeal" or something like that. He also did a test called Vectra DA and a bunch of other blood work, but I didn't really understand what all he was testing for. He just said he was going to test me for "a whole gamut of things"... then told me to take fish oil, keep taking the NSAID, and use Traumeel cream on my hands in the mean time.

    Of course that EEG is still in my near future, and I have a few more days at least before my bloodwork results are in.

     
    Old 04-09-2014, 03:39 PM   #14
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    Re: Vague Symptoms, No Diagnosis, Help if you can :)

    Quote:
    Originally Posted by VeeJ View Post
    Re upcoming epilepsy tests, good luck. Let us know how it goes. Will keep my fingers crossed that you learn something useful, V.
    For anyone still following or who can help me make sense of this info which seems like Greek to me, I got some results from the rheumatologist (the one who was actually willing to run tests)...

    My hand x-rays showed bone erosion and some kind of cyst which the radiologist said was consistent with inflammatory arthritis such as rheumatoid arthritis, but the nurse says my blood work does not support an RA diagnosis. In fact, she said it was "ruled out".

    I had a Vectra DA test on which my score was 35 (in the moderate range) if that means anything to anyone.

    I had elevated C-Reactive Protein, which she said meant inflammation, but they had no way of knowing where it was coming from.

    Other than my iron being a little low, everything else that was tested thus far was in the normal range.

    Now he wants to do a chest x-ray (checking for sarcoidosis) and blood work to check for coeliac or crohn's. That seems odd to me since I don't really have digestive issues, but I'm glad he's being thorough.

    Can anyone help me make sense of that, or is that about all the understanding I am going to get right now?

     
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