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Last minute request for help,please!!!!
This is long and I apologize for the length and the disjointed nature of its presentation. I have an appointment in the morning with my local (general neuro) and I am having doubts regarding the MS dx...just want to make sure all the mimics have been considered since, until recently, I barely met the MacDonald criteria.
Quick synopsis. Have had numbness/tingling in left arm at least 10 yrs. Was dx with cervical radiculopathy after EMG/NCV.
In restrospect have had left leg dysfuction, possibly weakness-never documented objectively, but have fallen several times without explanation due to left leg "giving out."
Later, at age 47 developed new onset migrianes which academic neuro isn't convinced of since my "aura" is heavy/pain /numbness of left arm and lon term dizziness-not vertigo.
3 years ago- vertigo, syncope-perhaps due to an arrythmia per cardiologist. Increased frequency left arm/hand symptoms.
Local neuro started work up 3 yrs ago looking for syncope cause, considered seizures, CIDP, etc. Ran testing for B-12 , diabetes, Lyme, autoimmune, EMG/NVC studies, etc. Nothing positive in test results. Negative VEP, SSEP and LP.
Have had diagnosis of Sjogren's syndrome for 14+ years based on clinical symptoms-mostly joint pain -hips and hands in particular, dry eyes, mouth, long bout of pleurisy and parotid gland infection. ALWAYS sero-negative on lab work. Took Plaquenil for 3 years with no change in symptoms.
Went today to have lip biopsy done after seeing academic neuro and his choice of rheumatologist. New rheumy doubted Sjogren's but he was difficult to understand and with the communication difficulties I neglected to ask him why the joint pain. He ordered several labs and results are not in yet. The doc doing the biopsy today doesn't think it's Sjogren's either due to the good condition of my mouth but also seemed to doubt MS since I have joint pain. My DH was present and got the exact same impression and expressed it to me before I could think to ask his opinion.
OK, the reason for all this extraneous info is since I have a neuro appt tomorrow, can anyone suggest any questions I should ask that I haven't already covered. With a negative lip biopsy, and the doc feels it will be negative, the academic neuro is going to start tx for MS. This is fine but I want be sure that we haven't overlooked a mimic or wished I had asked something before I start treatment. I know Wanna Feel Well had similar symptoms to mine but her labs were positive and mine are not.
Signs/symptoms pointing to MS- 2 lesions-non-enhancing. One , 3 mm in size, in the corpus callosum, other lesion right temporal parietal region which is "somewhat ovoid in shape and runs perpendicular to the periventricular space". Newly documented weakness in left leg and areas of numbness documented with Seimmes monofilament in foot and thigh. Poor balance, etc. Brain fog on occasion. Episodes of blurry vision and diplopia.
I plan to ask what type of Lyme test was run -Elisa vs Western Blot but other than that I cannot think of any thing that's been overlooked.
Can anyone think of something I haven't asked or been tested for? Sorry if this is a little scattered in thought process but I took a pain pill for my lip and I'm sure it has interrupted a decent train of thought.
Thanks for your help,
Rendean
Quick synopsis. Have had numbness/tingling in left arm at least 10 yrs. Was dx with cervical radiculopathy after EMG/NCV.
In restrospect have had left leg dysfuction, possibly weakness-never documented objectively, but have fallen several times without explanation due to left leg "giving out."
Later, at age 47 developed new onset migrianes which academic neuro isn't convinced of since my "aura" is heavy/pain /numbness of left arm and lon term dizziness-not vertigo.
3 years ago- vertigo, syncope-perhaps due to an arrythmia per cardiologist. Increased frequency left arm/hand symptoms.
Local neuro started work up 3 yrs ago looking for syncope cause, considered seizures, CIDP, etc. Ran testing for B-12 , diabetes, Lyme, autoimmune, EMG/NVC studies, etc. Nothing positive in test results. Negative VEP, SSEP and LP.
Have had diagnosis of Sjogren's syndrome for 14+ years based on clinical symptoms-mostly joint pain -hips and hands in particular, dry eyes, mouth, long bout of pleurisy and parotid gland infection. ALWAYS sero-negative on lab work. Took Plaquenil for 3 years with no change in symptoms.
Went today to have lip biopsy done after seeing academic neuro and his choice of rheumatologist. New rheumy doubted Sjogren's but he was difficult to understand and with the communication difficulties I neglected to ask him why the joint pain. He ordered several labs and results are not in yet. The doc doing the biopsy today doesn't think it's Sjogren's either due to the good condition of my mouth but also seemed to doubt MS since I have joint pain. My DH was present and got the exact same impression and expressed it to me before I could think to ask his opinion.
OK, the reason for all this extraneous info is since I have a neuro appt tomorrow, can anyone suggest any questions I should ask that I haven't already covered. With a negative lip biopsy, and the doc feels it will be negative, the academic neuro is going to start tx for MS. This is fine but I want be sure that we haven't overlooked a mimic or wished I had asked something before I start treatment. I know Wanna Feel Well had similar symptoms to mine but her labs were positive and mine are not.
Signs/symptoms pointing to MS- 2 lesions-non-enhancing. One , 3 mm in size, in the corpus callosum, other lesion right temporal parietal region which is "somewhat ovoid in shape and runs perpendicular to the periventricular space". Newly documented weakness in left leg and areas of numbness documented with Seimmes monofilament in foot and thigh. Poor balance, etc. Brain fog on occasion. Episodes of blurry vision and diplopia.
I plan to ask what type of Lyme test was run -Elisa vs Western Blot but other than that I cannot think of any thing that's been overlooked.
Can anyone think of something I haven't asked or been tested for? Sorry if this is a little scattered in thought process but I took a pain pill for my lip and I'm sure it has interrupted a decent train of thought.
Thanks for your help,
Rendean
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,
ess
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,
ess
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,
Rendean
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,
Rendean
Hi Rendean,
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.
my best,
Lulu
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.
my best,
Lulu
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
Attacks:
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
Clinical Lesions
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?
MRI- Brain
2 classic lesions (1 in corpus callosum, 1 periventricular with classic orientation)
MRI-Spine??
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.
Quix
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
Attacks:
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
Clinical Lesions
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?
MRI- Brain
2 classic lesions (1 in corpus callosum, 1 periventricular with classic orientation)
MRI-Spine??
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.
Quix
To: Lulu and Quix
Thanks for the quick repsonses! Very much appreciated !
Quix:
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.
Many thanks!
Rendean
Thanks for the quick repsonses! Very much appreciated !
Quix:
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.
Many thanks!
Rendean
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.
Q
ping! another point in the MS column.
Q
I do remember ,which is why I added it to my 2nd post. Forgot to mention the muscle spasms as well. My neuro-pysch testing ordered by the local neuro starts tomorrow. Guess, there's another point for the denial phase column as well ;-)
As you told student01 , I believe, guess I should pull up a recliner and get comfortable.
Thanks again,
Ren
As you told student01 , I believe, guess I should pull up a recliner and get comfortable.
Thanks again,
Ren
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