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Avatar universal

Is it Arthritis, MS, something else, or am I just a hypochondriac?

I'm having multiple symptoms that may or may not be related.  Any ideas would be helpful.  Can't seem to get someone to look at everything.  Diagnosed with gastroparesis (not diabetic); have blurred vision (intermittant and both eyes); horrible left side headaches with loss of sensation on left side face and left eye pain (no redness in eye and no history of migraines previously); TMD; tinnitus that has recently increased dramatically; GERD; painful swollen joints (hands, shoulders, ankles, feet, knees,  and especially cervical neck); IBS; Intersital Cystitis; insomnia; and frequent muscle cramps, including spasms in the neck/shoulder area that lock my neck at an angle, pull my shoulder back and are extremely painful.  Seeing a neurologist for headaches.  he has me on cymbalta; it worked for 2 months and now the headaches/eye pain/numbness is back.  seeing a gastro guy for stomach stuff, he has me on Nexium for gastroparesis.  Any ideas what might be causes all or most of the symptoms?  Most doctors seem to focus on one symptom and don't look at whole.
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Avatar universal
It's been 8 months now.  I've tried Enbrel (didn't help me), Humira (worked fro 4 months, then gradually stopped working), and now he's switched me to Simponi.  My PSA has progressed.  Distal joints in toes and fingers; wrists; elbows; and ankles have all jointed my spine, hips, and knees.   Not giving up though.  At least we know now what the heck is wrong with me after 20 years of wondering.  

One thing I've noticed is a significiant increase in my pain level and the swelling of the joints during the summer.  I always have a major flare in the summer.  Does anyone know if increase in the exposure to the sun has a negative effect on psoriatic arthritis?  I live in Florida, so it's kinda hard to avoid :)
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465332 tn?1258523126
Good luck with trying to figure it out.  I hope your doctors can help you with what's causing your edema.  So far no luck with me.  Mine has been going on since 2007.  They've done a full cardio work up on me (my dad passed away from a heart attack at 65years old and my mother had 90% blockage of her heart and had a stent put in), but my dad had severe edema in his legs, ankles, and feet for about 7 years before he passed on, especially when he became ill but they could never figure it out.  His legs were so swollen that the skin would peel and his legs and ankles were so tight, he couldn't wear shoes, only slippers.  They never figured his edema out either.  That was 6-8 years ago.  I'm to see my rheumatologist again but they are unable to see me until February.  I had some blood tests done 2 weeks ago by my allergists and CH50 was a little high.  They wanted me to report it to my rheumatologist.  I'll be searching for another one for a sooner appointment I guess.  Can you keep me posted on your condition?  I would love to find out if a doctor is able to help you.  Have a great Thanksgiving if I don't hear from you sooner and thank you for responding.  Good luck.
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Avatar universal
my pitting edema (what causes me to gain 4-6 lbs) happens out of the blue, i get out of breathe, and it's all over my body, legs, ankles, feet, abdomen, chest.  don't know why that's happening.  i'm going to address that at my next visit.  i also get swelling that's certainly joint related at each of my joints because of the arthritis, but the edema is different and comes and goes.
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465332 tn?1258523126
Hi Raven17,
I was reading all of your information and was curious if you had edema of your feet and ankles besides the joints. I have swelling of my feet and ankles and my right knee which I've had a slight tear of the meniscus.  I do have swelling of the left foot and ankle, but just not as bad as the right side.   I also have arthritis of the middle of my spine, my neck with herniated disk between C6 & C7 (car accidents in the past), my right knee of course, and my big toe on both of my feet due to bunyonectomies.    The swelling is not all of the time but it happens out of the blue.  I can't put a rhyme or reason for it.  If I'm on prednisone for allergies, the swelling is alot worse and the prednisone makes the pain in my right knee worse, almost unbearable.  I do have very small bumps on the palm of my left hand, but never had anyone look at it.  It's the same color as my skin but it's under the skin.  the bumps never gets bigger and doesn't hurt but sometimes it does itch.  I've had it for over 8 years now.  My hands flush red alot and feel very hot to the touch when this happens and then the flushing subsides.  It's weird and the allergist I was seeing in 1997 when this all started couldn't find any reason behind it. And yes, the ER doctors and family practice doctors sometimes makes me feel like I'm a hypochondriac which I know I'm not.  I hope you are feeling better and that this regimen your on is helping you.  Good luck to you and God bless!
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Avatar universal
I forgot to mention that the reason I've been so hard to diagnosis as Psoriatic Arthritis is because I'm one of the 15% or so that gets the arthritis before the skin lesions.  There is family history of psoriasis, so with that and the MRIs and my other symptoms, that's what he's going with.  He says he feels very confident that's what it is, especially considering the intense flare I'm going through now.
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Avatar universal
My second visit to the doctor was great!  I took a copy of all my many MRI reports I've had over the last few years of my joints that would just start hurting for no reason and a chroniclogical list of the progression of my disease in a notebook tabbed in order of pain.  He left the room to read it, came back, grabbed my file to look at my blood work (something about low Vit D and protein), and told me that I had a classic case of psoriatic arthritis.  I just didn't present normally for a woman.  First off, mine started in the spine, most women start in the hands/feet and most of the time men get it in the spine.  I always have all that tendonitis in my joints with edema and the degeneration in the cervial/lumbar.  It's only attacked my hands/feet in the last 4 months.  He said he wished all his patients would be as proactive as me.  I just knew I couldn't go another 15-20 years.  I'm just so happy to finally have a doctor that believes me and has diagnosed me and can get me started on meds that can stop the pain and damage.  The level of pain has increase so dramatically over the last 4 months that I just want to scream over the wasted time and damage to my body (I actually had a rhuemy tell me I was too fat and need to have liposuction!)  

He started me on Methotrexate.  Within 30 minutes I had 102 fever, severe chills/body aches, so that drug is out.  Now he switched me to Arava (Leflunomide).  My question is what serious side effects have people had with this one and especially with people who have bad gastro issues.  

thanks,  I know that the doctors hands are tied a lot of times by the insurance companies on what they can prescribe and when.   seems you have to "prove" to the insurance companies that the older/cheaper drugs with the side effects that bother a stomach like mine can't be tolerated before a doctor can move on to the next drug.  crazy world we live in.
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483733 tn?1326798446
Do ask for a PPI (proton pump inhibitor) drug which will protect your stomach.  It is the only way to manage taking anti-inflammatories.  Your GP should be able to help with that fast.
Helpful - 0
469901 tn?1276563623
I am glad you were able to get to the rheumy and glad you are among the lucky who can afford it.  Many here are not able to get the care they need.
If the celebrex is tearing you up, I recommend you talk to the doc about something to protect your stomach or that will not be as hard on it.  I never like to hear that a doc pushes a patient to take something they clearly state they can't tolerate.  If your doc is not listening to you, that does not bode well for your future treatment.  Try to establish rapport but do not hesitate to see another doctor.
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Avatar universal
Hi, well after 3 months, I finally got in to see the Rhemy doctor.  Of course there wasn't a lot he could do on the first appointment.  Drew blood for work up, took xrays of hands and wrists to see if any damage.  Basic stuff.  Prescribed me Celebrex, even though I told him i cannot tolerate it because of my gastro issues.  He insisted that I try it again.  Said I should take it without the capsule because that's what causes people to be sensitive to it.  What?  Oh well, I really suspect that he's forced to prescribe that first by the insurance companies no matter what.  I'm taking it and after 3 days as usual pain, pain, pain.  Just hope I don't get another ulcer.  I should be getting blood results back from the office tomorrow.  The one silver lining is for the first time I've actually be in the middle of a flare of whatever I have when they've taken the bloodwork.  Always before, by the time I got an appointment to see a doctor, the flare was over (why does it always take so long).  This time it took long enough for one flare to end and another to begin.  Maybe something will show up this time.  The flare was certainly worse than ever with vertigo, edema, shortness of breathe, and high blood pressure thrown in with every joint in my body swollen and painful.  Oh, and did I mention the excrutiating headaches.....

On the plus side, I'm alive, living in a wonderful country where I have access to health care I can afford and the freedom to speak my mind on forums like this.  

God Bless America and let's keep all our soldiers around the world in our prayers, whatever our political persuation...
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Avatar universal
Diet is very inportant when it comes to health.  If you are expericing health issues
like this, usually the body is over toxic so going on a clean diet usually will help.
look under wholefoods, juicing for your problems I recommend reading Healty Healing by Linda Rector Page, N.D., Ph.D.  to start she list problems and solutions in the book
very good guidelines. Hope this helps, it has helped me and my family and friends
when the doctors were still trying to just give me a drug to cover up the symptom.
Best,
Belinda
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971283 tn?1247767572
Please stay in touch...God Bless you ;-)

D
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971283 tn?1247767572
Hello Raven,

I'm sorry you're having so many symptoms..I just wanted to say, I feel what you're saying, I too have multiple symptoms , (thank you Txsilver for your support),  I  am having tinnitus, pain in joints, tendinitis in hands and feet, low grade headaches and blurry vision , especially at night  (lights)  I have tingling in both arms to my finger tips.  I just had Rh  and Gout ruled out...My Dr. said my rash on hands (joints) is exezma...

I'm still having the pain and symptoms....  I just had my Vestibular testing done (ENT) and my left side is damaged ( meningitis 1999)  Now they want to do an MRI?  Thank God I found out my blood test on that are neg, they were looking for Lyme's, and ready for this?  Syphilis<  / I was pretty sure I didn't have that.

I'm sure you know you, I too have been starting to question myself about being a hypochondriac?  ;-(   My prayers are with you..

Danny
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Avatar universal
With everything that is going on, you may want to consult an Internist instead. Their specialty is all of the internal organs, not just one or the other.
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469901 tn?1276563623
I hope he is great!  Please keep us posted!
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Avatar universal
thanks for the replies, my primary care doctor just referred me to a reumy guy out of town, he's supposed to be great.  hopefully, he'll be able to help.
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469901 tn?1276563623
It is possible to have all your lab works come back negative and still have a condition.  Seronegative RA, for example.  Keep going and, if you can get to the Mayo clinic, many people rave about it.  If not,  I strongly suggest contacting a local support group and finding out who their members recommend.  Patient recommendations have made a big difference for me and many other patients I have talked to.  Please keep us posted.  We will be here to listen and help where we can.
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712802 tn?1274645485
My youngest daughter went to Mayo Clinic - they take a team approach and look at everything; all of the doctors on the team that reviews your case communicate with each other. She was very impressed. If that is an option for you you might give them a try. I have severe Arthritis and it is all over me - which causes all sorts or issues and problems. Then again, some of your issues might not be related to Arthritis. txsilver gave you good advice - keep after them until you are satisfied they have found the cause. It could be something serious. Good luck.
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Avatar universal
Yes, I had bloodwork run a few years back.  Sed Rate normal, R Factor negative, ANA negative, BL27 negative....  always negative, but all the symptoms...
Helpful - 0
469901 tn?1276563623
Have you had any one run an autoimmune series on you?  If not, I think you should.  This sounds very familiar to how my story began.  Not that you will be like me, many conditions have similar symptoms sets, but I did end up having several AI conditions going on at once.  I can really relate to the symptoms you describe and am so sorry to read you are going through this.  It is frustrating, but you are doing the right thing.  Keep going to the doctors and keep trying to get them to look at the "big picture".  You may find you need to see a rheumatologist.  The diagnosis process can take a while.  Some get answers almost immediately, but for many of us it takes a year or years.  Being your own advocate can speed up the process.  
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