For Those Interested, This Was The 2nd Opinion

[jamilea]

I'm curious to know what you guys think, being patients of this disease for awhile. This is an email I sent to her after I saw her to make sure I understood her correctly. My continuation is added so it looks like one email here:

From: (last name deleted),JAMI (middle initial deleted)
Sent: 12/12/2016 1:23 PM PST
To:
Subject: Hi
Hi Dr, thank you again for seeing me today. I wish appointments could be made for two hours because there was so much more I wanted to tell you about symptoms history. Anyway, I want to make sure I understood you correctly about what the plan is. I will send you a new email when I run out of room, but I'll try to keep it short.

1. It could be MS and Fibro.
2. It could be Fibro and under-treated anxiety; 9 brain lesions being caused by migraines (do the fleeting stabs of pain in my forehead and shooting pain through my face sound like migraines to you?--I don't know what to call that, that's why I'm asking you).
3. As an aside, but still related, the attack in 2010 could be CIS and since MRI technology wasn't as good then, the spinal cord lesion could've been missed. Doctors don't know who will go on to develop the disease of MS so it's just monitored with MRI.
4. I need to do the lumbar puncture to get some answers because right now we are just going in circles.
5. If it's MS, it will definitely show up on the lumbar puncture because it has been almost 7 years. If it's not, it will be Fibro and there is help for that. Or, it could be something totally different.
6. There are no alternative tests to do aside from the lumbar puncture other than the MRIs and blood work I've already had, because I've had every test.
7. If the lumbar puncture is positive, don't worry because I'm in great shape compared to what is typically seen this far out.
8. Right now, I don't meet the criteria for a MS diagnosis because the lesions aren't in MS specific locations other than the juxtacortical and periventricular, they aren't ovoid shaped, and they aren't large enough, but it still could be CIS because the spinal cord lesion was probably missed in 2010 due to the MRI machines being used then.

Please let me know if I have understood what you said because I'm having trouble putting it chronologically.
________________

Here was her reply:

To:
Jami (middle and last name deleted)
From:

Received:
12/15/2016 3:29 PM PST
Hi Jami
It was a pleasure meeting you
Yes you have summarized our conversation very accurately in the 2 emails
Please do go through with the LP
Best wishes
Dr.

***Moderator's Note - Physician's name deleted for privacy issue***
________________________

[jreagan70]

I think it's important to note that the summary is in your words, which have their own nuanced meanings. Although the doctor agreed with the facts of your summary, if the summary were in her words, the meanings would be nuanced differently.

Point #8 does summarize your posts over time. Nothing you said supported a second demyelinating episode, which is required for diagnosis of MS. Even if you were able to talk about nothing but symptoms for another hour, there still wouldn't be enough to support a second episode.

That leaves the interpretation of the MRIs as the only other evidence available.

The stabs of pain in your head and face sound like ice pick headaches, which are believed to be related to migraines. So the migraine explanation is entirely plausible for the brain lesions and their nonspecific appearance.

The interpretation of the MRIs is important to determine whether there has been dissemination in time. There is a high possibility that the spinal cord lesion was missed in 2010, which removes dissemination in time from the picture. Hence, you may meet the requirements for CIS but not for MS. So that all makes sense.

And point #4 is also important. There might be a couple of things in your summary to quibble about but, mostly because of your anxiety, you're just going in circles. You don't need any more distractions to be anxious about. So it does sound like the only thing to get you off your merry-go-round is the LP.

Basically, everything looks reasonable. But no matter what you have, it's obvious that your anxiety is complicating your health issues significantly. So I hope you can get back into therapy, get your LP done, and start moving forward.

[jamilea]

The only thing I want to add is that I don't have undertreated anxiety. I've never been diagnosed with that. I've been tested by Psychatrists (spending thousands of dollars) and I went through therapy for four years (spending thousands of dollars) to work through my childhood only to uncover that the medical stuff that happens to me makes me anxious. It's situational. When I'm doing all of these tests and people ask me to explain what happens to me with symptoms and I have such a short time trying to convey what's going on to a doctor, it makes me anxious that I'm not going to be able to relay what's going on fully.

Plus, I use the Bible as a form of CBT as well as I do CBT work books. I'm fine

The anxiety thing is kind of a stab in the dark. The symptoms that I experience is not anxiety so I'm not sure why she brought it up or why you do. It kind of puts me on the defense because the people who are saying it don't know me well at all.

I'm not upset though. It's not that big of a deal.

As for the ice pick headache, I just read about that. Maybe that could explain the forehead stabbing since they are very short lived. I don't even take anything because it goes away as soon as I swallow something haha. I see nothing about shooting pain through the cheek into the head though. Is that a variant of it? I know nothing about ice pick headaches.

Fibro is a high possibility though since my Mom was diagnosed recently. Apparently, my grandma and great grandma a long time ago as well.

I'm scheduling the LP for after the holidays. As always Reagan, I appreciate you taking the time to respond to my posts. It helps me to put things into perspective.

[Jules A]

I also think the LP is the next logical step.

Where the anxiety issue comes into play is that although as you pointed out your anxiety is largely situational based on medical concerns however it does seem as if it might be a bit magnified from the expected level? The concern that a skilled physician can't get a reasonable picture in a standard 50-60 minute appointment is an example, imo. I don't you so just putting that out there and I hope although it makes you defensive that people suggest your emotional state influences your physical presentation it would be remiss not to address the connection. Unfortunately what can happen, particularly with women, the more emotional and needy we seem the less attention to our actual physical presentation. In general I'm not a fan of fibromyalgia diagnosis and believe it is given in disproportionate numbers to those with personality disorder traits but thats another discussion.

Please keep us posted and I hope the LP finally gives you an answer.

[jamilea]

Plus also, I posted here once in 2014 and then nothing for like 2 years. I felt fine for like half of 2011, all of 2012, all of 2013 aside from a few symptoms. I got a cosmetology license, got married, etc.

I felt pretty good in 2014 too and got my CNA certificate. It wasn't until the Spring of 2015 that I started having issues again. It went away and then after the car accident this year, it all came back.

Thus far, these doctors only want to hear about 2010.

I don't feel they are being responsible or ethical by doing that. A demyelinating event is not exclusive to going limp on the left side of a body, having a numb patch and feeling weak on that side.

I thought an attack is defined as a new symptom or return of an old one that lasts 24 hours or more (not including a pseudo or infection) or has that changed?

And on top of that, according to the criteria, paroxysmal symptoms count as evidence as well as subjective reporting.

I haven't been able to do that yet because each appointment is focused on the 2010 event which is absurd.

For them to pass the spinal cord lesion off as possibly being missed in 2010 is just wrong. They don't know that for sure.

There is no lesion size or shape requirement in the criteria and the only time a positive CSF is required is under the 0 (progression from onset) category.

And I haven't had all of the tests. Dilated eye exams are showing a raised optic nerve in my left eye. Nobody will give me a VEP when I ask for it.

She did say she wants me to get a neuropsych eval to see where my memory is breaking down which is good.

I'm getting the LP. Hopefully that will solve things. But still, they cannot rule out MS if it's negative. It isn't even a MS specific test and she cannot say for sure that if it's MS, it will show up in the LP. That's not even backed by science.

I'm done with people trying to make me feel like it's all in my head and that I need to see a psychiatrist. I did that already. It isn't all in my head. My coworkers and loved ones have seen what I go through. I have a great life except for this thing that kicks me in the butt every now and again. I have a strong faith. I just want someone who wants to discuss the complete picture. This bits and pieces crap is getting old. I'm not gonna put up with it anymore.

This is my life. If a doctor doesn't want to take the time to go through it all, he/she can take a hike lol or they could, at the very least, give me a nurse to work with the put what I actually report into my chart.

Sorry I'm venting. It's not directed at you!

[SNOOPY]

jamilea,

The symptoms that I experience is not anxiety so I'm not sure why she brought it up or why you do.

I have no idea if you have anxiety or not. For those with anxiety their number one fear is having Multiple Sclerosis. By your statement I'm not sure you know how anxiety can affect a person.

Symptoms associated with the body due to anxiety:
http://www.anxietycentre.com/anxiety...l#symptomslist
If the link gets deleted you can go to anxietycentre or search for physical symptoms of anxiety.

5. If it's MS, it will definitely show up on the lumbar puncture because it has been almost 7 years. If it's not, it will be Fibro and there is help for that. Or, it could be something totally different.

MS does not definitely show up with a LP. There are those that are diagnosed with MS and either had a negative LP or never had a LP.

3. As an aside, but still related, the attack in 2010 could be CIS and since MRI technology wasn't as good then, the spinal cord lesion could've been missed.

I don't know where your information is coming from but I have spinal cord lesions and they were being detected well before 2010 by MRI.

[KoKo]

Hi jamilea

Can't remember if you mentioned this in previous posts, (if so, sorry for the question) but did you have clinical signs of neurological impairment during your neuro exam (abnormalities in cranial, coordination and strength, sensation, reflexes)?

If you did, I'm wondering how did your neuro explain the reason for them?

https://multiplesclerosis.net/diagno...ological-exam/

Sorry that you are going through this frustrating time. Wishing you the best.

Take Care

[jamilea]

The place where I got that information about the MRI technology was straight from the doctor. She isn't the only doctor who has said that. The Resident Neuro said the same.

There are no nuance differences in the list I made in my initial post. I wrote what she told me.

Yes, I am aware of how anxiety affects people. I've done extensive research on the subject over the years as well as I've been tested by two Psychiatrists along with sessions and sessions with a Psychologist for therapy for four years.

Do I feel anxious sometimes? Of course. Everyone does. Do I experience greater anxiety at times? Yes, but only when I'm sitting in front of a doctor talking about what has happened to me medically.

Do I get stressed out/upset when I feel like crap for months at a time? Sure. Do I know the difference? Yes.

Having Multiple Sclerosis is not my number one fear. Losing my loved ones is as well as fearing that I won't be able to have children.

When I had the experience that I did in the beginning of 2010, the very first hospital staff asked me, after the MRI results came in, to tell them if I had any strange symptoms prior to then. I reported that in 2007, I got out of bed one morning, stepped onto the floor and couldn't feel my legs. I started noticing muscle twitching after exercise. I was a very active person so it was odd to experience that. Then the frequent urination started. In 2009, I started experiencing bowel changes, started missing chairs when sitting down, felt some weakness on my left side and fatigue. I didn't go to the doctor for any of this because I barely ever got sick and thought maybe I was stressed or something.

In January of 2010, I experienced my first "colitis" attack. The abdominal pain woke me from my sleep and was excruciating. It was so bad that I almost passed out. I thought perhaps I was allergic to something I was eating because I had read that adult onset of food allergies is not super uncommon. I did an elimination diet and discovered I was sensitive to Nightshade foods so I stopped eating those.

In February, I was talking on my phone when I felt something grab me in the upper left side of my chest, my arm went completely limp and made me drop the phone. My left leg went limp. My ex says I was slurring my words and the side of my mouth looked droopy so he called 911. When I got to the hospital and saw the doctor, they said I was having time distortion because I didn't remember having an entire conversation with the doctor. They thought I was having a stroke and so they ordered my very first MRI.

After they listened to the odd symptoms I reported prior to this, I was told that there were brain lesions and that early MS is a concern and to go see a Neurologist. I once worked for a woman in 2004 who had MS. I had never heard about it before and only knew that she had gone blind before and then her vision returned. So I searched for a Neurologist and paid out of pocket to see one. I told him the same thing as I told the hospital people as well as explained to him what happened and brought a copy of the MRI report. He laughed at me and told me that I need to work on finding my place in life.

The next doctor blew it off as anxiety and wrote conversion reaction in my chart. So, I didn't have the best time with doctors right off the bat. When I lost balance and fell down the stairs in April, a Neurologist at Baltimore Washington Medical Center started running tests to rule out MS. Somewhere in between, I had another "colitis" attack. CT scan showed inflammation in my colon. Then I got health insurance. I did a colonoscopy. Biopsy didn't show any disease. In about April or May, a Neurologist diagnosed me with unsteady gait, and some other stuff. As you guys know, I had a pretty tough battle that year and then lost health insurance right when the LP was ordered.

That pretty much began my journey with all of this. Because of those two doctors in the beginning brushing it off as anxiety, is the main reason I blew it off for as long as I did and just dealt with things. I still was sensitive to the heat though still and I had very minor symptoms (frequent urination, fatigue, and tingling on the right side of my head) that never went away completely, during the periods of time I felt pretty great. In the Winter of 2014 though, my husband and I took a vacation in the mountains. We were in the hot tub together. I started feeling dizzy, stood up to get out and almost fell over. My legs and feet would not work. They were hurting. My husband had to lift me out of the hot tub to the bed. I felt better the next day, but I wondered why I have those experiences.

Anyway, in the Spring of 2015, the crushing fatigue returned starting afternoon 2pm, got worse and worse as the day went on. The pain in my legs and feet had returned. The weakness, etc. I started thinking that maybe I had Fibro or something so I went to a Rheumatologist. He referred me to a Neurologist and then I injured my back at work. I spent the next year healing from that, but got a new job two months after I was no longer allowed to do modified duty. Three months later, I was rear ended, then caught a cold at work. The cold knocked me on my butt for days and then old symptoms returned. When the headaches from the car accident weren't going away, that all set in motion another brain MRI and then another spinal cord MRI, this time to include the full spinal cord. And you know the rest pretty much.

So that's my story in a nutshell. I guess I've never told all of it here exactly, just bits and pieces.

[jamilea]

Hi jamilea

Can't remember if you mentioned this in previous posts, (if so, sorry for the question) but did you have clinical signs of neurological impairment during your neuro exam (abnormalities in cranial, coordination and strength, sensation, reflexes)?

If you did, I'm wondering how did your neuro explain the reason for them?

https://multiplesclerosis.net/diagno...ological-exam/

Sorry that you are going through this frustrating time. Wishing you the best.

Take Care

Hi KoKo, thank you for that link. The things I noticed upon the neurological exams that these new doctors have performed are that I have trouble balancing when my feet are together and eyes are closed, I have trouble when doing the test that looks like a police sobriety walking test. I feel my balance jerking to one side so I have to go slow. I also notice that when I'm asked to touch my nose with my right finger, I miss my nose and touch the side more onto my face, and I noticed I feel things less on the right side of my face from the left. The Resident Neuro said that he only noticed the reduced sensation in my face from side to side.

I've told them before that I started having issues while at Church when I close my eyes to pray while standing, I start losing balance and have to hold on to the chair in front of me. I hope nobody thinks I'm drunk

I also reported that I have a numb patch on my lower left leg in the front. I noticed it while shaving and realizing I couldn't feel the razor on my skin in one area. I tried with my nails and the same. No feeling. Also, an area on the front part of my left shoulder. They did not check those areas.

I checked through the list at the link you posted. Here are the things the Neurologist hasn't done:

1. Olfactory
2. Optic (other than having me follow their finger). I've told them before that when I'm trying to focus on something such a sewing/reading, My left eye skips really fast to the left and back. It's disorienting for a moment. Is there a test that can find out what's causing that or somehow reproduce it? And you guys know the optic nerve is raised in my left eye, which wasn't that way in my Ophth exam back in 2010. The Ophth thinks it's just the way my eye is and didn't want to see my previous exam records.
3. Taste
4. Swallow
5. Proprioception
6. Torso area sensitivity
7. Checked sensation in the areas I reported feeling numbness

[SNOOPY]

Hi jamilea,

KoKo had asked you about your Neurological exam and I didn't see where you responded to it in your last post. I went back through some of your other Threads and found one where your Neurological exam was normal except for a slight difference of feeling on your face.

It's highly unlikely for a person to have MS and have a normal Neurological exam. Those of us with MS will always have some deficits upon Neurological exam, we simply do not have normal exams.

The place where I got that information about the MRI technology was straight from the doctor. She isn't the only doctor who has said that. The Resident Neuro said the same.

Based on my own personal experience I will say they are wrong, at least it would be in my case

I am sorry you were diagnosed with Conversion Disorder. I have no way of knowing if this diagnosis is correct or not, but I have seen what it can physically do to a person. The symptoms are caused by the subconscious.

Have the LP jamilea, if for no other reason than peace of mind. Take care

[jamilea]

Hi Snoopy, I thought I did answer her, but maybe my post wasn't approved in time for you to see it.

Also, I wasn't diagnosed with conversion reaction. My records from the time with one specific doctor says "MS vs conversion reaction".

I'm gonna do the LP after the holidays. After that, I'm going to take my records to a doctor that will spend the time going through my history or at the least, give me a nurse or medical assistant who will go through it with me to get my charts up to date. That way, if we do need to monitor anything over time, it will all be there for when the next thing happens.

[annedocuk]

Jamilia,
As a doctor who myself has MS I sympathise with you. However, let me suggest to you that no general physician will want to spend several hours listening to a list of symptoms. Specialists are very used to honing in on the symptoms that are relevant. Furthermore, you list a set of things that you feel were not tested. Let me reassure you again, specialists are very used to doing tests. For instance, were you dribbling? If not, then he HAS tested swallowing. A numb patch on a leg realistically has no anatomical logic, so it will have been put down to anxiety.
Why not accept that for the moment things are not catastrophic, and get on with enjoying life. Anxiety and stress do not help with other problems you have mentioned such as conception. Just chill out and relax, and hopefully life will take a rosier turn.

[jreagan70]

Hi jamilea:

When I said that your anxiety is complicating your health issues significantly, I didn’t say, imply or mean that your anxiety is causing your symptoms.(That’s actually oversimplisitic.) I mean that your anxiety is coloring your perceptions, contaminating your thinking processes, leading to faulty conclusions, and affecting your decision making. It’s the bad decisions that are complicating your health issues.

You wanted to know what we think. I think the more you write in this thread, the more obvious the contradictions and flaws in your logic become.

Because so many other people are stuck where you’re stuck, your situation presents a great opportunity for you to help them as well.

You’re completely stuck way back in square one and running in circles. Because you can’t get out, you’re trying to get everybody else who has already moved forward to go all the way back into square one with you.

In the diagnostic process, the purpose of a person’s symptoms is to show the doctors where the problems are so they can order proper tests and begin the investigation. In your case, your symptoms point to neurological issues, and the proper tests include a physical exam and MRIs of the brain and spinal cord. You’ve already had those.

The purpose of neurological screening tests is to discover what other tests need to be done. Ultimately, those tests include MRIs of the brain and spinal cord. You’ve already had those.

There’s no valuable medical diagnostic information that’s going to be attained doing the sequence backwards. So it’s apparent that the only reason for doing what you want done is for the sake of doing it, not for the results of the testing, which you already have.

You’re so overwhelmed by your emotional need to talk about your symptoms – to the point that you think you need hours more to talk about every little detail – that you’re making up your own rules so you can keep talking about it. You’re right, and all your doctors are wrong. You’re calling them “irresponsible,” “unethical,” and “absurd” because they won’t abandon all of their professional knowledge and go with you all the way back to square one and what you think is the truth. And you’re going to pack up your medical records and search for a doctor who will let you keep talking into infinity.

Where you’re stuck – and where so many other people are – should come as no surprise to you, because it’s part of the same toxic cycle you’ve posted about and said you’ve been in before.

Continuing to talk about the past keeps events active in your thinking. And as long as an issue is active in your mind, you think that it is still alive. And if you think it’s still alive, you think that you can still change it. So you keep needing to talk about it so you can keep thinking you can still change it. And you just keep running in circles because you can’t allow yourself to believe that the past is gone and you can’t change it because you don’t know what else to do.

That includes rehashing every last little symptom, counting every little patch of numbness on your body, every moment of dizziness, every ache and pain, every symptom that has already long ago given up its medical meaning, all so your unethical, uncaring doctors will be forced to admit that you’re right and they’re wrong and validate every fear and hurt you have. And you think that that will change the past and make things turn out the way you want them to. And you want them to do meaning screening tests for the same reason.

Except that that’s not going to happen. No one is depriving you, and no one is harming you.

All that drama exists only in the toxic cycle in your own head.

You do need to talk about your symptoms, and keep talking about them. But that isn’t a job for your neurologists, and they’re not going to get pulled back into square one with you. It’s a job for a mental health professional who can help you break out of that toxic cycle, and out of the unchangeable past and your need to control it.

And that’s why I said you should go back into therapy. Your toxic emotional cycles are stealing your life. You deserve to get it back.

[hunterd]

I cannot aagree more with the previous posters about having the LP.
That also brings up another point that I tell people, do not worry about tomorrow, you will miss today, and once it is GONE, you can not get it back.

[pennstater]

Hi jamilea,

It sounds like the neuro gave pretty good rationale for wanting an LP.

The MRI issue may just be referencing 1.5 vs 3.0, which 3.0 being stronger and finer granularity. At this point, noone can answer whether a spinal lesion existed or not in 2010. But the fact that one exists now, and you have some brain lesions, though not normal MS locations, your neuro is looking to explore further. And while LPs are not 100% reliable, it may help.

I have never had a neuro listen to a detailed symptom log. Only me providing my list of symptoms, with me prioritizing and talking about top ones. Doctors just can't give a patient the kind of time you are looking for.

A neuro won't diagnose these days on symptoms. This becomes much more important once diagnosed and if on treatment to help assess effectiveness.

I would take a break, enjoy the holidays, and then take a step back to evaluate what your next steps are:
1. Schedule LP. Regardless of result, follow up will give you chance to ask more questions or
2. Wait and see if something occurs that may warrant a new MRI, but find out what this criteria is from neuro or
3. Keep trying to find a different neuro. But there are lots of cons. You lose consistency of same neuro review; if CIS, then consistency with neuro become important if gray lines; some neuro may not take your symptoms as serious, and may feel you are driven by anxiety or hypochondria.

Understandably, it is an emotional time. And while I know you feel time is critical to get on a DMT ASAP. If issues in 2010 were MS, then what has occurred since then puts all the odds in your favor that you won't have a progressive form of MS.

Try to enjoy your family and holidays. Hope you are well.