hoping to find anyone with same symptoms to give me an idea of whats wrong

[needadiagnosis]

I am hoping someone can help. 6 years ago I started having bad leg/foot pain out of the blue.  I have had so many blood tests I can't even remember them all, ultrasound of the legs, bone scans, xrays, and ct scans.  My dr originally told me I had mild sjogren's syndrome and that was what was causing the pain.  Over the years, the pain has progressively gotten worse and the flare ups last for months, only having relief for a week or two at best.  The pain is severe and hard to explain, it feels like a deep pain almost like it is deep inside the bone, but I do not know if it is actually the bone or the muscles or nerves causing the pain.  After 4 years of this suffering, while doing blood work my dr tells me that the levels on my bloodwork for sjogren's are down but are elevated for lupus.  He then tells me that the pain is caused from lupus and that sjogren's does not cause pain after all those years of telling me sjogren's was causing the pain.  There are times when I get small lumps on my legs which I believe he called lymphoma's but I'm not positive and as it goes away it leaves a bruise-like scar.  He treated me with prednisone for the lumps and it did help those.  There are also times when my legs/feet get red or sometimes purple splotches on them.  The pain has never been higher than the knee, sometimes it involves the knee all the way down to my entire foot, and other times it is just the leg, foot, or knee.  The pain wakes me up at night and about 2 months ago I woke up with pain in my right foot so severe I was crying and could not walk on it at all.

[krisste9]

i am looking for someone that has these symptoms .the doctors are still searching for anwsers I have no pain  just unable to function on a daily basis.  i stay unbalance,walk with a cane for fear of falling,slurred speech( some days or worse than others) unable to write ( can't read it ) i have a list of diseases that i don't have , that i have been tested for and nothing about what i do have. i feel like a lab rat

[nicknatmom]

PLEASE PLEASE PLEASE ask your doctor about REFLEX SYMPATHETIC DYSTROPHY -RSD aka CAUSALGIA. While you wait look it up online.
Becareful what you read , there is good information and there is bad. DR Hooshmand's website is one of the best. He  has "RSD Puzzles" that you may find quite helpful.
Not all doctor's are educated about this condition. Good Luck and I hope you find the diagnosis you so desperately seek.

[Annie62]

Yes, keep us posted on what you find out, if anything, after your doctor's appointment or if you see a neurologist or rheumatologist.  A lot of people never come back to the board to update and let those of us on here know what they find out.  It is always interesting to know what has happened with someone and if they get a diagnosis.  I always read any new posts, even if they are on down the list, so I will be watching.  Good luck to you.

[young at heart]

I agree with the others,I'd find a neurologist and I would exclude any previous DX from your GP.
I have MS and I have had many days to where I suffer chronic pain in my legs.I'm on many meds that usually  mask it.I have found that a long soak in the tub with epison salts has helped a great deal.

[needadiagnosis]

Wow thank you for your story, although it sure does not give much hope after seeing how long you have been waiting for a dx.  I have spent months searching the net and to tell you the truth I think all that has done is confuse me more.  I have found that there are several people who are misdiagnosed several times because most of the time symptoms fit so many different things.  I can see how that happens after searching on my own and finding that my symptoms fit part of this and part of that etc.  Wouldn't it be nice if someone were to invent a computer that hooks up to the body and tells you what is wrong with it similar to a car!!!!!  Sometimes I get to a point where I give up ever knowing what is wrong with me and then there are times when it gets to me so bad that I start back at the beginning searching for answers.  Other symptoms that I don't think I mentioned are numbness from the knee to the foot, sometimes just the foot, numbness in the arm and hand at times, fatigue, periods of sharp pains in lower back, and I have had times when I move I feel as if I am going to black out but I am not sure if that is connected or something different because it was a period of about 2 weeks that I had that problem and have not had it since.  That is the hardest part of all this, you never know if your symptoms have anything to do with each other or if they are something new.  Sometimes something that seems totally unrelated has everything to do with it.  I have terrible short-term memory but again, I don't know if that is related or something else.  
I often feel like I am wearing myself out searching for answers, I'm sure you have felt the same way as well after all this time.  One thing I know for sure is the pain and function of my legs and feet have definitely gotten much worse since the beginning of this and I fear if it continues I will not be able to walk at all in a few more years.  That scares me along with the memory problem.  Thank you for your advice, I will be seeing my dr again in about 3 weeks and plan to be referred somewhere if nothing has shown up on my MRI.  I am just not sure if I should start with a new rheumatologist or a neurologist but I plan to have a lengthy conversation with my dr to figure that out.  I will keep you posted.  Please keep me posted as well.

[Annie62]

No, I haven't been dxd with Sjogren's or lupus.  I am like you, though, in search of a diagnosis, though that finally appears to be nearing an end for me.  I have spent the last 13 years (since '94!) trying to get a dx and have been through all the testing for the connective tissue diseases/rheumatologists, endocrine work-up for Hashimoto's, Cushing's, and several neurologists since '99.  Until '99 I believed I had a connective tissue disease (just felt really ill, chest pain/tenderness, low-grade fevers, etc, along with a mildly positive ANA, but in '98-'99 my symptoms clearly became neurologic in nature.  Actually my very first symptoms started back in '90 when I developed something called Horner's syndrome where I stopped sweating on the left side of my body and my eyelid drooped and my pupil became small.  I felt fine then, didn't know anything about medical stuff back then, waited over a year to even see a neurologist, who gave me the "good" news that it was probably benign and only did a chest x-ray.  It wasn't until '94 that I actually got sick-after an infection (a recurring pattern with me since then)-with chest pain, low-grade fevers, faintness, slowed pulse/slowed, shallow breathing, etc.  Went to a slew of doctors (infectious disease, rheumatologist, cardiologist, etc.), didn't even have a PCP at the time-never went to doctors for anything before then, and they all thought it was in my head (either told me or wrote it in my records).  I was so ill and in so much pain I thought I was going to die for about a year and a half.  Did somewhat better for about three years and then in '99 got a really bad intest./bacterial infection and all my symptoms came back full-force along with new neuro-type ones (slurred speech, left leg and arm weakness, trouble swallowing, mouth droop, etc.).  I can remember lying on the bathroom floor half unconscious with my ears ringing in the middle of the night.  Once again thought I wouldn't survive it.  Lived up North at the time-went to a new set of doctors and they also let me know they thought it was psychosomatic (apparently this is a universal thing with doctors).  I tried repeatedly to get my old records from the neuro in Florida I saw in '91 so that the neurologist up North would know that I had something neurologic going on prior to all this (just in case it was related-which I now know it was), but their office kept telling me they couldn't find my records (I absolutely do not believe this to this day).  First they made it sound like there was no record of my ever being there, but then I told them I had the bill with the date on it.  

So my symptoms started almost 17 years ago (at 27) and I have spent almost 13 years feeling ill with virtually no doctor believing there was an organic basis to my symptoms-which considering how sick I have been (and I mean significant struggling to breathe, faintness, feeling like my heart was going to stop, light-headedness, etc), is just unbelievable to me.  So the reason I know something about connective tissue diseases (and autoimmune diseases in general) is because I have spent the last 10 years on the internet trying to figure out what is wrong with me since no doctor was willing to do his/her job.  In the meantime I continued to progress, and there wasn't a thing I could do about it.  It wasn't until a dx of severe gastroparesis in August (the latest part of my body to be affected) after endoscopy and gastric emptying scan that I was finally believed by my PCP.  In fact in my last appoint. with him I asked him point-blank if he believed that I was really sick, that I really needed to know.  I told him about the GP and that I read it was caused by autonomic neuropathy and that I thought there was a connection to my other neuro symptoms.  His response was, "Well, I believe that your *symptoms* are real."  Apparently he had not gotten the records yet from the gastroent. and didn't know what I was talking about.  I was so angry and disgusted when I left his office.  Two weeks later, to my surprise, I got a phone call from Mayo telling me I had an appointment up there.  Apparently he had since gotten the records from or talked to the gastroent. regarding my recent gastroparesis dx and I was finally believed after 13 years of fighting a battle that I should not have had to fight.  I was sent for an MS evaluation but have instead been tentatively dxd with autoimmune autonomic neuropathy-basically an autoimmune disease that is attacking my autonomic nervous system (affects BP, heart rate, bladder, stomach emptying, sweating function, breathing, swallowing, etc.).  Also, waas told I might have a component of CIDP (themild leg/arm weakness, sensory stuff).  I am supposed to be getting a letter from the doctor in the next week, so I will know more when I get that just what the tests showed or didn't show and if this is indeed what I have.  

If I were you I would do as much reading as possible-typing in your symptoms in conjuction with different connective tissue diseases, etc.  If you really think something neurologic is going on, then make an appointment with an neurologist, but it doesn't sound like anything neurologic to me from what you have described (unless there are other symptoms you didn't list).  If you had an ANA of 1:320 or higher then lupus would be a definite consideration.  Also, check your records to see if a double-stranded DNA was done (my ANA was mildly positive several years back but my DsDNA was negative-making lupus even less likely).  If you have had consistently positive ANAs and are testing positive for one of the other antibodies in the ELISA panel (can't remember them now), then chances are you have a connective tissue disease.  Check to see what pattern it was too.  Mine was nucleolar, which is commonly seen in scleroderma (although i don't have scleroderma).  You said you didn't think Sjogren's could be causing all your symptoms.  I don't know that much about Sjogren's, although I have read on it in the past, but it can be a serious disease.  Not sure if there is a big pain component or not (as you are experiencing), but I know it can cause autonomic dysfunction, etc.  Do you have the dry mouth/eyes/sicca complex that is common with Sjogren's?  That is also supposed to me a symptom of what I have tentatively been dxd with, but I don't have the dry mouth/eyes, either.  Everything isn't black and white with diseases, though.  If you are not having any tingling/numbness, blurred vision in one eye, leg/arm weakness or any other neuro-type symptoms I doubt MS would be a consideration, but it is a highly variable disease, and anything is possible.  My cousin has MS and hers presented with optic neuritis-a typical presentation, but there are atypical presentations.  Maybe you should just return to your rheumatologist (or find a new one if you weren't happy with the old one) and ask more questions and get answers on exactly what your tests showed (ANA titer and pattern, DsDNA (if done), ELISA panel for Sjogren's, RA, etc).  Connective tissue diseases are horrible diseases, some worse than others, so if you are feeling really sick or having other unexplained symptoms, I wouldn't rule them (or Sjogren's) out.  

I'm curious, do your symptoms get worse with infection (triggering off exacerbations) or with certain times of your menstrual cycle?  That seems to be common in autoimmune diseases.  I have read a good deal on this, as my symptoms were exacerbated in the extreme by ovulation, so some autoim. diseases seem to get worse or better at the time of one's period, during pregnancy, etc.  Hormones definitely play a big part in these diseases.

[Lil Bo Peep]

MS mimics many other diseases like lupus, fribromyalgia.  You can also have all those along with sjogrens with MS.  Everyone's symptoms are different.  But wicked pain and numbness and lack of coordination were my initial complaints.  

I would certainly suggest you see a neurologist and don't tell him about the sjogrens.  I have the same problem you do when I mention MS, a doctor is quick to presume my complaint is MS related.  So  I found it is better not to mention it until after he/she does their examination and gives me an opinion or sometimes not at all.

[Hityty]

Your symptoms do sound like an autoimmune disease, such as MS, Lupus, Lyme, FMS, CFS/CFIDS, thyroid, & others. Sjogren's too. I've had FMS/CFS, Mercury/Lead poisoning, MCS, & a few other things for 18+ years.(I'm 38) I suspected Lupus, Lyme & MS, but tests were neg. But tests are often wrong, as I found out. Finally, I was Px'd the Marshall Protocol (MP) in August, for "Th1 inflammation disease" which basically is autoimmune diseases, like my FMS/CFS, all originating & progressing from a Th1 illness. For the 1st time in my life, I have something that is working! I highly recommend looking into the MP, its a curative therapy that involves a combo of common med's, avoidance of Vit. D, sun & bright lights. Sounds strange, I know, their website explains it VERY WELL. You don't have to have an actual Dx to try the MP, in fact the MP has 100's of members who searched for years for help & were always told they were fine. You do need to be Px'd the MP, but if your doc isn't interested, the MPer's can tell you what doc's in your area are already Px'ing it. There are people all over the world now on the MP, it is fairly "new" so it is not well known, yet, but its getting there.

When I 1st read your post I was wondering if you may have RSD: Reflex Sympathetic Dystrophy, I have friends who suffer from it, the mother has it in her foot, the daughter has it systemically, including internal organs. The pain is unbearable, just like you described, & it can travel to other parts of your body. Many of these autoimmune disorders mimic each other in symp's, so they are hard to dx & often misdiagnosed. But the MP explains how they all stem from the same thing. symp's can overlap w/others, sometimes not making any sense, For example, my doc's couldn't tell me why I had a sudden significant hearing loss when my only dx at the time was FMS. At any rate, try not to use prednisone anymore, it might offer temp relief, but it will cause tremendous problems in the future. However... ALL of this can be addressed with the Marshall Protocol, it takes a bit of time & energy researching over the material, but is VERY worth it. It has such a high success rate!!! Please look over it. Here are some good links to check into for starters:

"What is the Marshall Protocol": http://www.marshallprotocol.com/forum2/4213.html
"Is the MP an applicable treatment for my disease?" http://www.marshallprotocol.com/forum32/1263.html

Then on their main page: marshallprotocol.com, look up the many different articles under the headings: "Essential Information about the MP" & "Marshall Protocol FAQ's"

Some other good sites for info:
Autoimmune diseases in Women: http://www.aarda.org/women.html
Lyme disease website's: http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html & http://www.canlyme.com/patsymptoms.html
FMS/CFS: http://fmnetnews.com
RSD: http://arthritis.about.com/od/rsd/a/rsd.htm

Don't give up, you're not alone!!! Keep us posted!

[Hityty]

Sorry about the long posts, but I had another thought:
You don't drink or eat anything with artificial sweeteners like Aspartame or Succrolose (Splenda) do you? Check ALL labels, its in everything, even toothpaste & baby aspirin. It's poison, toxic, & has caused MANY severe health problems.

Have you ever tried castor oil compresses with heat? Its very soothing & helps with pain sometimes. If you haven't tried it, let me know & I'll explain what to do. It helps me a lot with pains in my legs & arms.

[needadiagnosis]

Little Bo PeeP, you say that you think your pain is caused from MS for which you have been diagnosed.  What are the other symptoms of MS?  

Annie,  I am curious if you have been dianosed with sjogren's or lupus and if so do you have similar pain?

[needadiagnosis]

Thank you so much for your information, I will look into the sites you listed.  I have never tried the castor oil compresses, if you could tell me more about it I would appreciate it, I will try anything at this point.

[needadiagnosis]

Thank you for the information, it certainly helps knowing there are people out there who care and know what I am going through.  I think the worst part is not knowing what is actually wrong and going through all the numerous tests and doctor visits all the time in a constant effort to find the problem.

[Hityty]

Castor oil compresses:
Spend the extra money to get "organic" Castor Oil. Use a piece of flannel (I cut up old flannel sheets) & soak it with the castor oil. Get a heating pad or one of those microwavable rice pads & warm it up, not too hot, though. (Wear old clothes cuz the oil can get on everything.) Place the flannel on the area that hurts, (also suggested to put on abdomen which helps a lot with digestion & stomach aches.) Then cover the flannel w/plastic wrap, then apply the heat pad. Keep it on for about 20 min's or so. Its really thick oil, so after you peel off the flannel/plastic wrap, you can soak up the oil on your skin with an old towel. You're skin will feel good too. It's not perfect, but it does help, at least a little. Oh, you can reuse the flannel, keep it refrigerated/covered, & you can use it several times. Hope this helps some.

& I agree w/lil bo peep too, I would skip mentioning the Sjogren's to any new doc. I get the same thing when I tell new docs about FMS, once I mention it, they are in no hurry to find out what else could be the problem.
Keep us posted!

[needadiagnosis]

Thank you both so much for your comments.  As far as rheumatoid arthritis goes, they have checked for that.  I was referred to a rheumatologist back at the beginning of this problem, about six months after my initial complaint.  It was the rheumatologist who dianosed me with sjogren's.  He did an ANA and my family doctor does that every 6 months now to keep an eye on it but I don't remember what exactly the results were.  I am 37 years old.  I can't help but feel like my doctors point their finger at sjogren's every time there is a problem now that i have been dianosed with that rather than search for the real problem.  I feel that the sjogren's was found as a result of whatever else is wrong with me, but after all these years I am quite confident it is not the only problem there.

Should I asked to be sent to a neurologist?  I know I need to see another dr but unsure of which kind.

Again, thank you both so much for your comments.  I appreciate any help I can get.

[Annie62]

Also, the nodules might possibly be rheumatoid nodules.  I would do a search on that and see if it resembles what your nodules/bumps look like on your legs.

[Annie62]

Needadx,

Has your doctor considered rheumatoid arthritis?  I don't know if it usually starts in the legs, but it's worth asking/reading about since you have swelling and pain that is possibly joint pain.  Have you had a rhematoid factor done?  Also, why did the doctor even think it was Sjogren's?  Have you had the antibody panel for the different connective tissue diseases done?  I assume you had an ANA level or else he wouldn't be suspecting lupus now.  What was your ANA level and the pattern, do you know?  I had a positive ANA at 1:160 (sometimes mildly positive in many autoimmune diseases), but the ANA is usually higher in lupus (>1:320).  Your doctor should do a double-stranded DNA to help rule in/out lupus.  Also, the pattern of the ANA sometimes helps point to a particular connective tissue disease (nucleolar, speckled, etc.) if you do have one.  

As far as irregular periods, don't know your age, but I've read it is also common to go through early menopause if you have an autoimmune disease (of which Sjogren's, lupus are one).  I have had irregular periods since I was 37 (now 44) and haven't had one since 43.  Not exactly premature ovarian failure, but early considering the average age is 51 in America.  Sounds like you might want to get a referral to a rheumatologist since your doctor seems to be playing guessing games at which connective tissue disorder you might have.  good luck.

[Lil Bo Peep]

Hi need.  I'm so sorry you are having so much pain and trouble.  I have had the same kind of pain (it hurts so bad it takes your breath away) but I think mine is due to MS for which I have been diagnosed.  

I would find it very hard to believe the pain you describe originates in the foot.  May I suggest you tell your doctor you want a brain and spine MRI instead or in addition to?  And don't take no for an answer.

While vicodin does help it only masks the symptoms.  There are better drugs out there for what you are describing.

Hang in there sweetie.  Be proactive in your healthcare and don't be afraid to go to another doctor if you are not getting satisfactory answers.  You need not suffer like this.

[needadiagnosis]

Oops I forgot to mention the time when I went to the ER with foot pain so bad I couldn't walk on it, the foot was also swollen and I honestly thought maybe I had broken some tiny bones in it and not known it.  Sometimes the pain involves swelling, sometimes edema, and sometimes it appears normal.  This has been going on so long and there have been so many different symptoms it is hard to remember everything.

[needadiagnosis]

I went to the ER and was put on prednisone, vicodin, and put on crutches and told to stay off it for a few days.  I ended up staying on crutches for over a week, then staying completely in bed for 2 days before I could  walk on it again.  About 3 days after I was walking on it again, the pain was shifted to my right knee, I couldn't lift my leg unless I used my hand to lift it because it felt like it was pulling the tendons so bad they would snap.  Now it is back to leg pain so bad that it wakes me up at night almost in tears.  This problem is sometimes on my right side, sometimes the left, and sometimes both at the same time.  I am totally at a loss as to what is wrong with me but I am at the point that I don't know how much longer I can stand it.  It is so depressing to wake up and start your day every day in such severe pain.  I have finally gotten my dr to schedule me for an MRI but he has it listed for just the right foot, I am going to call him and insist he make it of both legs from at least the knees down including the feet but I think it should be of the waist down.  Also I don't know if it is related to these problems or not, but I have been having migraines off and on for the past couple months after not having any for 13 years and my periods have been irregular.  I have spent countless hours searching the internet trying to find an answer as to what is wrong with no luck.  Does anyone have any idea at all as to what I should ask for, what kind of specialist I should ask to be referred to, or what tests should be done that haven't already?  I would be so forever grateful to find out what is wrong with me, there are times when I honestly feel like I am slowly dying and can't find the cause.