Wow, your situation is complicated, and I can see why you're getting many conflicting opinions. I wish I could help, but the only thing I too can think of is Lyme. You might want to have this retested on general principles. If the Elisa is negative you should absolutely go for the WB, and maybe have it run twice. I'm sure you've already looked up the reliability factors for these tests.
The thing is, MS doesn't produce joint inflammation, and because Lyme is systemic, I believe it can.
Hope Quix checks in here soon. She may have some other ideas.
Good luck tomorrow,
Thanks for the quick response. Lyme is the only thing I could think of to double check esecially with controversy over the reliability.
I did have one othropedic tell my daughter who has hypermobile joints and is very flexible that she will probably have arthritis and joint pain as she ages. I am flexible but not to the extent she is so I still feel that's a strange "excuse" for the joint pain.
Thanks for the good wishes,
Your thoughts were not at all disjointed - it is well put together for us to understand your concerns.
I would just like to remind you that it is very possible to have something like arthritis AND another auto-immune disease like MS. That may explain the joint pain - I definitely have it in my hands (both of my parents have arthritis).
Good luck at the doctor tomorrow - I'm sure you will let us know the outcome.
Well, this is complicated.
I gather the symptoms in your left arm was demonstrated by a "positive NCS." So the radiculopathy was demonstrated. If the NCS was negative that would point toward the problem being in the central nervous system.
Possible hx of left leg dysfunction - long term
Late in life onset of atypical migraine disease 4 yrs ago
3 years ago - dizziness symptoms and syncope - cause not positively determined. plus - renewed symptoms in left UE - Was an MRI done to visualize the nerve root? Is it impinged?
Presumptive Dx of Sero-Negative Sjogrens based on joint pain (hips, hands), and clinically dry mouth/eyes, pleurisy, and parotitis. Any dental deterioration due to lack of moisture? Lip biopsy pending. Treated empirically with Plaquenil = no improvement.
If we try to fit all of this into MS we have
0) How sure are we that the arm numbness was nerve impingement? Maybe first attack?
1) Left leg weakness - continuing, possibly worsening
2) Possible syncopal epsiodes (unlikely related to MS)
2) Atypical late-life onset migraine disease 3 years ago
3) Episodic worsening of left arm paresthesias
1) Left leg weakness (reflexes??)
2) patchy numbness (same leg?) - possibly not enough space between these first two
3) poor balance (cerebellar or brainstem)
4) Do you have normal sensation in the troublesome left arm? Was the testing normal?
2 classic lesions (1 in corpus callosum, 1 periventricular with classic orientation)
Work-up to exclude mimics
Pretty extensive. Lyme ELISA vs WB unknown.
Well, you certainly make criteria for MS. But, I share the concern about the joint pain, the possible cardiac problem) A or another Western Blot for Lyme is mandatory.
Let's talk about the joint pain. Have they examined your hands ( the rheumy should have) Where is the pain? An X-ray will sometimes show what kind of arthritis we are talking about. You are in the right age group for osteoarthritis. If the pain is in the last two joints of the fingers and the base of the thumb this is most likely OA. If so we remove it from the equation. Do both hips hurt? or mainly one? If your left leg has been subtley weak all this time, you would have compensated for it in your stance, posture and gait which could cause a degenerative joint pain. So have you seen an orthopod to evaluate the condition of your hips? People with MS can certainly have creaky old, abused joints and joint pain.
Now, does Lyme affect joints? Ummmm Yes, Ma'am!! It has a special fondness for joints, and arthritis is one of the most common problems. Push for a WB with reporting of specific bands.
Hypermobility syndrome?? Again, Yes, Ma'am. Runs in families often and plays havoc with the joints and arthritis in later life. Because the joints' range of motion is beyond normal, the joints often go beyond the point where they are well supported by ligaments and such. They suffer incremental small injury throughout life, and we pay for it later. Were you a very flexible youngster and teen?
My gut is that - pending the WB - this is MS.
I know I restated what you said, but that helps me to think.
The only things that I can think of are 1) await results of new blood work and bx.
2) Get WB sent to a major lab, 3) have someone evaluate your hands and what they look like, and 4) maybe see a Physical Medicine doc (also known as a physiatrist) to see if your gait may be responsible for causing mechanical damage and pain to your hip(s) because of the suspected long-standing weakness and 5) MRI of neck to confirm that old radiculopathy thing. Did the rheumy who did the EMG/NCS that were negative retest your left arm? I'm confused about where that stands. 6) MRI of spine, if not done. 7) See an ortho to evaluate your hip for OA vs an inflammatory arthritis.
To: Lulu and Quix
Thanks for the quick repsonses! Very much appreciated !
To fill in the blanks and answer some of the questions you posed:
Re: left arm NCS: a different neuro ran these tests back in 1999 and told me the dx. I didn't ask how he came to the conclusion. I do remember that the cervical MRI done at that time was negative for impingement and no changes have been noted in cervical MRI's since.
RE Sjogren's: no dental deterioration or cornea issues due to long term dry eyes
RE the joint pain: Only one episode of joint effusion (R knee). Pain only symptom iin hands and hips,so I guess arthralgia is the better term. Old rheumy noted some minor OA in hands. Hips alternate with pain. X-ray showed no cartilage loss. Recurrent bursititis and steroid injections. Finally saw ortho re L hip pain one year ago and he was the 1st to order PT. Hip pain thought to be due to weakness and altered gait according to PT. I am currently seeing the same PT for increased L leg weakness (needed to physically lift leg to get in car). We discussed the hip pain and weakness issues. Her thoughts (which I respect) were that something neurological was causing the weakness-this was a year ago when she put a cold pack on my hip and it caused immediate cold sensation in the now numb toes. Left leg -absent patellar reflex. Patchy numbness L leg.
L arm is weaker as tested this week by PT but functionally I do not notice a difference although am R hand dominant.
RE flexibility: Can still bend over at the waist and lay my hands flat on the floor - no warmup necessary. So yes for the hypermobility.
RE:MRI thoracic spine- 1.5 yrs ago on 1.5T - normal. Have requested the academic neuro to consider a thoracic MRI on a 3T. The hospital just opened the 3T at the Spine Center on March 1. I see him on April 13th for the final summation.
RE L arm EMG/NCS: local neuro ran limited testing (insurance wouldn't pay so he checked for cubital and carpal tunnel at his expense-negative for both)
Forgot to mention in the original post: "extremely hypertonic bladder" per uro-gyno. EMG readings literally off his screen.
So , I guess asking for a Western Blot is the only thing left. I appreciate your input and helping me think this through. My gut tells me MS as well. I live in GA and Lyme isn't very prevalent down here, or so I've been told.
Thank you for putting to rest my doubts. I will ask for the WB tomorrow. Is there only the one lab I've seen mentioned that is deemed reliable? My local neuro is very accomodating-heck EMGs for no cost? Gotta love that. He is also the one who wanted to be absolutely sure before we began treatment. He had doubts about the MS Center's eagerness to treat before the newest decline in function so he referred me to the current academic hospital when insurance wouldn't pay for Mayo or UAB.
Do you remember my thread "Adventures in the Sandbox?" In it I state that the most common neurologic abnormality in MS is Hypertonic bladder - medically called Detrusor Hyperreflexia.
ping! another point in the MS column.