I was diagnosed with dysautonomia (affecting multiple systems: medication/pacemaker placement to HELP somewhat) ten years ago after a severe case of mono. I have recently (last two years) had new symptoms and followed up with my neurologist who sent me for a lumbar puncture to "rule out" MS... to his surpise, the test showed positive for MS. The extra bad news is that I am unable to have an MRI due to the pacemaker. Any idea's of other test that can be done to confirm the diagnosis before starting the treatment?
Sometimes neurologists will request a visual evoked potentials test, which is a test that measures the milliseconds that pass between the time a stimulus is presented to your eyes and the time it registers in your brain. The test is looking for poor conduction of signals along the optic nerves, which are nerves that are commonly damaged in MS.
Depending on your symptoms, the doc may want to run tests that could potentially rule out other medical issues that could be causing your symptoms. Most people have blood work during the MS diagnostic process for this reason. Many people who have one affected limb will also undergo EMG testing to rule out peripheral nerve problems.
Also, your neuro will probably need a very good case history from you, meaning he/she will need an approximate timeline for any symptoms you've had in the past which could be attributable to MS. This one is difficult since MS can cause so many diverse problems which could also be attributable to some other process. I recommend you do your best to write something up, being as concise yet complete as possible.
Best wishes to you. May your upcoming appointments go well.
Thank you for such a complete answer. I have many things documented & already provided to my neurologist.
I just completed an EMG and another nerve/sweat gland biopsy about a week ago and haven't heard back as of yet. I assume the biopsy will show small fiber neuropathy, as it did before. From what the doctor administering the EMG, I believe that peripheral nerve problems are ruled out (good news, ay?). I do not remember having a visual evoked potential test yet; however, memory is somewhat of a problem. I'll check in to it.
I did lose vision in my eyes for about a week due to extreme pain, which they ended up diagnosing as iritis (INNER eye inflammation), on onset I also tested with very high pressure in my eyes. They said that diagnosis usually runs with an autoimmune disease.
My doctor said we are going to wait three months then repeat the lumbar puncture to see if results are still consistent with MS.
Many major symptoms overlap with dysautonomia, so I am having trouble separating the two.
I am having trouble falling, tremors, severe orthostatic intolerance, numb & burning in legs & hands, temperature adjustment issues, cold extremities (sometimes one only), tunneling, headaches, eye pain, severe pain in the back of my head, ect.
Do you agree with his plan of action? He plans to start MS meds at that time....
Hi! I don't think we have crossed paths yet, so welcome! Even if I am a bit behind and late with it. Why on earth would this doctor repeat an LP? You have obands and they never leave your spinal fluid once there. I would ask for a second opinion, and make sure you are seeing someone who specializes in MS.
Not that long ago, MRIs were not readily available and the MS diagnosis was made with good old fashioned doctor skills - the clinical diagnosis. Your symptoms and the positive LP should be enough for him.
As for the MRI - it is possible to do one on someone with a pacemaker but it requires a cardiologist to be on hand to reset it if it stops pacing. Someone here had that done and I hope she sees this and adds to the conversation. There are new pacemakers that are MRI compatible - keep that in mind when you have to have yours replaced.
Good luck with the next step - welcome again and I hope we see you around.
YES, you CAN have an MRI with a pacemaker. Mine is a 2005 and this is what they do.
Find a good cardiologist. They usually know who will do it.
They have the pacemaker rep turn off the pacemaker, a cardiologist is
there on standby. They do the MRI, then they turn the pacemaker back on
and the pacemaker rep checks it again.
Turning it off prevents the MRI from altering your settings.
I had one in February of this year and came thru fine.
Lulu and Sarah have posted a few of the things that were going through my mind whilst reading your post, why on earth would your neuro be repeating the LP, when its already possitive? Is this neuro an MS neuro? and getting an MRI when you have a pacemaker is actually possible so whats going on in this neuro's head, lol
Ok here's a couple of other thoughts, is this a chicken and the egg senario? Could your dx of dysautonomia be the result of having MS all along? Meaning the MS came first and its what has ultimately caused the autonomatic dysfunction and other sx's, which btw all fit into the MS bundle of sx's, so actually quite possible?!
Is this the neuro who has been treating you all this time and or the one who dx's you with Dysautonomia, (which your probably very aware is still a controvercial dx's due to its rarety) is it actually the very same neuro you saw recently, who accidently discovered you probably have MS? If its the same neuro, i'd definitely be getting a second opinion, with an MS specialist.
As for the tests used in the diagnostic process, the MRI is the biggest one used for gathering hard evidence, looking for lesions in 2 or more MS locations, but the neurological exam also detects lesions. Your neurological exam or clinical signs of lesions, and medical history is a bigger indicator and the MRI is 'suppose' to just be confirmational. The
LP if its negative doesn't add any weight but if the LP has 2+ Obands then that does add significant weight towards. Additional visual testing of EVP or OCT are often used but if you already have a dx of ON (optic neuritis) then that is even more additional weight leaning towards. The last one is the EMG, normal results are consistent with MS, abnormal results lead away from MS.
So from my understanding i think you will probably already have enough diagnostic evidence for a clinical diagnosis of MS eg medical (sx) history + Clinical signs of lesions + ON + LP Gosh if thats right then i'd finding that MS specialist for a second opinon!
Thank you so much for each answer! I work a few hours a week and will be able to answer each of you in a few hours at a computer... It hurts my head to use my iphone. I'm sure you guys understand!
Talk to you again soon! :)
Thank you so much for the gracious welcome. Well I'm not really sure why he plans to repeat it... Is there different levels of testing that can be preformed on a lumbar puncture? That is what he seemed to explain. Based on the fact that he couldn't confirm the diagnosis with a MRI, he said we would have to rely on clinical symptoms and a LP repeated. What I'm wondering is if my LP could possibly show anything different in three months? If not, I don't understand holding off on treatment for MS.
That was my neurologist's original plan, turn off the pacemaker with a cardiologist near by then cover with led vest and proceed with the MRI. Unfortunately he called the hospital to request this be done and they told him absoltely not. That the risk of damaging the heart due to the leads was too great. Are they wrong?
I do know that Medtronic makes a pacemaker that is MRI compatible; however, when I had it replaced just three MONTHS ago (after 9 years), MS hadn't been thought of and a MRI was not at that time incredibly important according to my doctor. Although I had asked about it because of the severe head pain I had/have been experiencing. Even had we been aware of the MS, I'm not sure a different decision would have been made by my team of doctors. The reason is because of the functions that are available on that model. According to my cardiologist, it would not be recommended to me because it does not have the rate drop function that is vital for my condition.
So you feel my next step should be, setting up an appointment for a second opinion? I really appreciate you taking the time to guide me.
Another LP could in fact reveal something, then again, it could be too early to do so. I have read (not saying reliable sources) and have been told by a MS Specialist in NYC that early in the disease of MS, the patients LP's may come out negative and that later on in the disease it would show CNS inflammation and OCBs.
You got a lot on your plate and I hope you stay around to continue to receive the support, experiences and empathy here at the forums.
Thanks for speaking up. Mine is a Biotronik Evia DR-T dual chamber pacemaker (implanted 04/2012). It uses a "loop feed" the best controls major rate drop episodes. Do you think MRI's are possible with any pacemaker? As you see above, my neurologist requested that to be done and he was told absolutely not.
After reading your messages, I contacted my primary cardiologist to see if he could make this happen.
Thank you! I am very glad to have come across this during my desperate searching.
I just called my mom, who is my acting memory, and asked about the “Obands”. She said that she didn’t see anything about them on my LP results and doesn’t remember my neurologist mentioning them. I believe the conclusion was made due to the protein levels that showed up on my LP. Or do they always check for Obands? Sorry, I’m kind of out of my element with this, even though I’m no stranger to chronic illness.
Well, what they said about that is I probably had dysautonomia first, which causes chemical/hormonal problems, which left unresolved could cause MS. Does that sound right? Yes!!! It is very rare; however, I haven’t had anyone question the existents of it at this point. I was diagnosed at Mayo Clinic (Rochester, MN) then received a second opinion at Cleveland Clinic. Both concluded at the time with dysautonomia (multi-systems).
Since reading you alls post, I have scheduled a second opinion appointment with a neurologist with much experience with MS. Sadly there is a month wait time. I’m the kind of girl that wants the answer so that I know what demon I am fighting! ;)
Okay, so my EMG was normal. So from what I understand, that rules out peripheral nerve issues and leads us back to MS.
What does “sx”, and “ON” mean? Sorry! I’m new to forums….
If you were getting the LP in regards to MS, then they should of been looking for Oligoclonal bands (Obands). 1 is classed as normal, 2 or more is not and points towards MS, Mayo (for reasons no one understands) wants 4 or more. In MS they expect to see only a slight increase of protein levels or normal. See below for what LP results they are looking for in MS
"Well, what they said about that is I probably had dysautonomia first, which causes chemical/hormonal problems, which left unresolved could cause MS. Does that sound right?"
errr no, thats got to be speculating our loud or a misquote because there is absolutely NO known cause (as yet) of MS! Autonomatic Dysfunctions are known to happen to people dx with MS, a lesion in the right location is usually the known cause. I personally have a couple of issues of autonomatic dysfuction, my internal temperature gage is broken and i have purple feet of no known causation, theory being my brain lesions.
ohhhh bother, i 'had' another really good article that delves into all the autonomatic issues of MS but its not in my favorates so i'll have to go on the hunt to see if i can find it again. Sorry about the abriviated terms, lol they are just a lot easier to type eg dx = diagnosed, sx = symptoms, ON = Optic Neuritis, Obands = Oligoclonal bands lol the list is pretty long and getting longer all the time.
Adding on a belated welcome to you! Thanks for joining us.
A bit of repair where o-banding was mentioned...
It's "unique" O-banding that would not be a "normal" finding.
That is, O-bands that are found in the CSF (spinal fluid) and not in the blood serum show that the banding is of CSF origin. If in both mean something altogether different.
Our health pages linked above, describe this.
Instead of just declining the 2nd LP - I'd ask the doctor. There may be a very solid reason an additional one is being ordered that was not verbalized yet.
B Burgdorf PCR
T Protein CSF- 22
Pre Albumin- 11 (high)
Albumin- 32.8 (low)
A-1 Glob CSF- 9.7 (high)
A-2 Glob CSF- 13.9 (high)
Beta Glob CSF- 12.4
Gamma Glob CSF- 20.2 (high)
Comment: CSF total protein is normal. CSF albumin is decreased and gammaglobulin is increased. This pattern is non-specific, associated with intrathecal immunoglobulin (IgG) synthesis plasma IgG cross-over, multiple sclerosis or various other conditions.
I'm not sure what all the individual results mean. Was there any mention of oligoclonal bands in the LP report? If o-bands are found in the CSF but not the serum (blood drawn at the same time) it points to MS.
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