Well, I have several, but since none of them are actually correct, I won't list them. But I'm interested to see what turns up here. Good thread.
yeah, Bio, you currently have several "junk" diagnoses. I would put you in as a Limbolander.
Onset of Symptoms: 1999
Number of doctors: 3 PCP’s, 1 Neurologist, 1 ENT, 2 Infectious Disease (one local and one at the Cleveland Clinic), 1 Rheumatologist, 1 Rheumatologist/Immunologist (at the Cleveland Clinic…who finally figured it out)…and a partridge in a pear tree.
Tip-Off: Once MS was ruled out by the Neuro in 2007 (through MRI’s), the tip-off that something WAS wrong was simply that my immune system continued to be overactive. He referred me to a rheumatologist. I started testing positive for cryoglobulin (an abnormal protein) and also the tests were showing CMV and EBV titers from an old infection, but then changed to a current infection which did not make sense and I was told this was not supposed to happen. Until the CMV and cryoglobulin problems were solved, I could not be treated. I was referred to the Cleveland Clinic.
Eventually a DNA test determined that the CMV was not an active virus in my system…not really there???…and it has been labeled as my “red herring” as it does still test as current…both IgM and IgG titers. There were a few other blood tests that were “wacko” as well, and are still unanswered.
Diagnosis: The Rheumatologist/Immunologist at the Cleveland Clinic diagnosed “Undifferentiated Connective Tissue Disease” (UCTD)...preferring that over “Mixed” as he stated it would allow him to use a larger variety of treatments if I would need to try different drugs. The three main overlapping connective tissue diseases he has focused on are Sjogren’s, Lupus, and Polymyositis.
Tests: Lip biopsy for Sjogren’s and the usual ANA break down for connective tissue. There was a lot of testing to rule out other causes for many symptoms I was having (focusing on cancer for awhile….which I NEVER thought I had), but once the lip biopsy was done (July 2008) I started taking Prednisone and Plaquenil.
Looking back to 1999, when I first went to my PCP due to overwhelming fatigue, had I known then what I know now, I would have switched doctors or raised a little HECK. The doctor at the CC looked over my tests from 2000 and could see it this all started then.
Treatment is working very well for me and I continue to improve. I have my life back. Had I not joined this forum 1 1/2 years ago, I might not have learned enough to know that a mimic might be the answer.
Sorry this is kinda long.
I was first diagnosed with mixed connective tissue disease. Then a very well published doctor diagnosed Primary Sjogren's and was very upset that I and others don't understand that Sjogren's is not just dry eyes and mouth. Finally 06/07 diagnosed with MS after TM that didn't go away.
OK, I posted on the Limboland thread, but this is really more appropriate. At least for now.
Date of onset of symptoms - October, 2007
Number of doctors - 2
Tip - off to your alternate diagnosis Negative LP, Negative VEP, Negative SSER, teensy or no brain lesions (depending on which MRI you're looking at), spinal lesions, bowel and bladder troubles
What kind of doctor and what tests made the diagnosis - Both doctors neurologists, current one is an MS specialist. MRI with spinal lesions, sudden onset of symptoms, no clear-cut multiple attacks.
Gee, where do I start.probably in 1993. Fatigue, muscle spasms, painful joints, headaches, weakness in right leg.etc. Lots of drs. PCP's-4- rheumatologist-1- Neuro-1- who ruled out MS, after MRI's only found 1 4mm lesion. 1-Opthomalogist. Ended up with degenerative disc disease, degerative osteo-arthritis, type 2 diabetes, fibromyalgia, allergies. No sudden "Oh, that's it!" moment. All in all, it su**s to be me!
And almost forgot! The lovely diabetic neuropathy, which sometimes causes me to walk like I'm on broken glass. Only a few steps at a time, and can't make one trip around a mall. Can't forget that one. Visual Aid.me sitting on the curb at Macy's, because I couldn't walk any farther to my car. I got some funny looks, but not one person asked if they could help! Maybe I should have held out a paper cup, suppose?
Date of onset of symptoms - October 2007
Number of doctors
- 10 Total , 4 neuros (1 MS Specialist), 1 opthalmologist (MS spec. wife), 1 Rheumie, my GP, 1 urgent care, talked to an Infectious Disease Dr., and my Lyme Dr.
Tip - off to your alternate diagnosis-
joint pain and hubby started having similar numbness/spasticity
What kind of doctor and what tests made the diagnosis
Unfortunately, I had to request the Western Blot for lyme myself. When it came back CDC positive, all the doctors that I spoke with either ignored it altogether or told me that lyme disease didn't exist in my state. The Infectious Disease doctor (who had treated lyme back east) told me that it would be considered too controversial to treat someone for neuro-lyme in OK (because it doesn't exist). I had to go out of state to actually get a "diagnosis" for lyme by a doctor that specializes in tick borne illness. (we had built a house out on acreage in 2003 and had both been exposed to numerous tick bites year after year)
MRI- numerous white matter lesions (@13) most and largest on the right side, hence the mostly left sided neuro symptoms---C-spine MRI- showed no lesions
LP- 1 O-band in CSF, none in serum
Reflexes- last exam (5/08) showed left knee:4+ left ankle:3+ and left bicep: absent
I was told at my last appointment (by my lyme doctor) that he doesn't usually see patients w/ANY # of o-banding and so I had to consider that I may have 2 diseases going on. I would love to have a neuro follow me, but I would probably have to lie about getting treated for lyme disease. It's all pretty ridiculous and sickening all at the same time!
Great post, Quix!
It's interesting to learn about the mimics. Being undx, I always research the different diseases our members have been dx with.
My symptoms still don't really match up with any of the mimics, as close as they do with MS, but who knows. Maybe someday, I will have my answers.
Thanks again, Quix.
Date of onset of symptoms - Summer 2007
Number of doctors:
- 3 neuros (one out of state at a university), 1 neuro-ophthamologist, 1 rheumie, 1 PCP.
Tip - off to your alternate diagnosis:
Onset of new symptoms in Fall '08 including the sudden appearance of fatigue, wide-spread bilateral joint pain and stiffness, and nausea. This was more than a year after the onset of my symptoms, which were largely sensory and thought to be neurological by my doctors.
What kind of doctor and what tests made the diagnosis:
I went to see a "LLMD," or Lyme literate MD. I had to pay out of pocket to see this doctor, and for the tests ordered.
I am still waiting for the test results, but was given a clinical diagnosis of Lyme at my 1st appointment. I do live in an endemic area, and started to have symptoms around the time I moved here. I don't recall a bite or rash, and I am a very indoor-sy person (no camping or hiking for me, thank you!). I have about 8 brain MRI lesions, non-enhancing and unchanged btw. Feb and July '08. My LP was negative for both MS and Lyme. I had two Lyme ELISA tests in Jan and July '08, both of which were negative.
My LLMD is concerned that I could have more than one process going on. The delay in diagnosis and treatment can cause additional problems as well as complicate recovery.
While I've been advised (by neuros) to have repeat MRIs, I at this time do not plan on returning to a neurologist unless I experience new/progressed neuro symptoms. I've been reading about brain lesions in Lyme, and it is a poorly understood topic. From what I've been able to find, it is not known if the mechanism leading to damage by Lyme is vascular or demyelinating, and it is not known if damage can be stopped or reversed with treatment. I worry that this poor understanding would complicate interpretation of any future MRIs. I do not want to get a wrong diagnosis!
I'd also like to comment (and hopefully not cause any upset in doing so) on the use of steroids in undiagnosed patients. I would urge anyone offered steroids to make darn well sure that they do not have Lyme, as steroids supress the immune system and are therefore horrible to give to Lyme patients. Note, steroids may offer short-term symptom relief, but if you do have Lyme, they will make it worse in the long run. (I was on prednisone in August and wonder if/how it contributed to the additional symptoms I developed this Fall.)
It's kinda funny I advise to make "darn well sure" about Lyme above, because to this day I'm still not sure how to do that! I really thought it had been properly ruled out in my case. It was not until I had developed more symptoms that I finally came back around to consider it as possible. And again, once I made that choice, I had to commit to it by going "off the radar" (and out of pocket) to an LLMD. I am going against the advice of all of the doctors and specialists I list above. Opinions on Lyme are strongly polarized, and it seems the opposing sides can't reach any middle ground. (SOONERMOM hits on this above when she talks about feeling the need to lie about Lyme treatment.) All this amidst transitioning to part time at work becuase I am not well enough for fulltime.
I still stuggle with my choice and the emotional fallout of starting treatment. I'll have a couple of good days and want to take the world on full force, followed by some bad days where I wonder if I'm really on the right track.
I'll be sure to update as my test results come in and my treatment continues...I really hope this is my answer!
Oh, and in response to Bio, I think the bogus alternative diagnosis issue should be yet another thread, to which I could also contribute :)
oooh! oooh! (Raising my hand in class even though the bell is about to ring) It came to mind to add what probably could/should have been a tip off:
When I first went to my doctor in Jan '08 she noticed a heart murmur, which a 2d echo study showed was being caused by mitral regurgitation. My PCP passed it off as no big deal, so I didn't really connect it to my other problems at the time.
I only recently re-connected that dot and realized that the murmur (she also called it palpitations, though again she was very blase about it so I didn't worry at all...) could have been a bigger clue in the hands of a better detective.
In general, my PCP seemed weird like that: Most of my tests were coming back normal, yet she seemed to brush off the few that came back abnormal.
Just another tidbit to throw out there.
Wow, this really is an interesting discussion!
I would also like to hear from people who carry dual (or more) diagnoses, like MS and Fibromyalgia or MS and RA. What were the clues that led to the determination that other processes were going on? (like Rebeccah and her O-Bands or Sara and her mitral valve disease)?
That may need to be a separate question.
There is no reason in the world why an unlucky person could not have two or three concurrent illnesses, especially where infections are concerned. People with Lyme could certainly develop MS and vice versa.
Stacy, Wonko, and Rebeccah - your stories are very important and persuasive. Those "other" symptoms that are very common with Lyme disease ((joint pain, family members being ill a the same time, heart murmur, cough, rashes (not just the Bull's Eye rash) and things like "interstitial cystitis" or Bell's Palsy)).
I think this is fascinating, and it gives us clues to how the diagnosis of MS must be teased out. So many people think that if all of them symptoms appear in the list of common MS symptoms that they MUST have MS.
I hope everyone finally gets a place to post.