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Posted 12/15/2006 1:57 AM (GMT 0)

Okay, I really need some advice and input.  I have put some of my background in other postings but just to reiterate:

I am 30 years old.  Diagnosed ON 9 years ago.  No symptoms, then episode numbness/tingling on my left side two years ago.  Diagnosed ON this past March and still having symptoms (including pain, decreased vision, color loss + tracking problems).  Negative brain MRIs, three lesions present in my spinal cord, Negative LP.  Postivie neuro exams with hyper-reflexia on the left side and weakness.  Sensitivity and exacerbation of symptoms with heat (ie. numbness of left foot when running, decrease vision and weakness after hot showers).  I also have neuropathic pain in my right leg that no one has been able to help me with...don't know what that is about.

My problem is that these symptoms and facts are real to me.  My GP and Opthamologist have told me that I likely have MS.  My neurologist initially told me that I could be in the preliminary stages of MS though I had no lesions on my brain MRIs to explain the ON and other symptoms. But the last time I was into my neurologist (in october) they said that based on my history of abuse, mental illness (I had an eating disorder when I was in high school and college) and stressful lifestyle they thought I could possibly have a conversion disorder.  I have seen a counselor about this and they said that they could find no evidence that I have an anxiety disorder or am depressed in anyway.  According to them, I am not psycologically ill.  I even tried a course of antidepressants at one point in this whole deal and that was when I relapsed with ON the second time.

I don't know what to do from here.  I really felt so dismissed and embarassed by my neurologist.  I am medically trained and I aggree, if there is no scientific evidence of lesions, I would think that maybe it is in the patient's head.  But I have also been trained to listen to the patient -- this patient is saying that something is not right. 


Right now I am feeling really guilty because I was supposed to have a repeat MRI done on this past Tuesday.  I cancelled it.  I just couldn't bear it.  I didn't want to sit through it.  I didn't want it to be positive and I didn't want it to be negative.  I just don't know what to do from here.  If I see another neurologist this would be number three and I would be walking in there with the comments from my previous neurologist about "possible conversion disorder".   I worry though because it is not normal to have ON twice.  I just want someone to validate that what I am experiencing is real.  Maybe it is not MS, but I am not crazy either.  Something is going on with my body.  

I trust and value your opinions and knowledge and would really appreciate some input.  It is scary for me to even put this out there as I feel so discouraged right now about the whole situation.  I try so hard to put this out of my head but the symptomatic daily reminders make this really difficult.

Posted 12/15/2006 3:23 PM (GMT 0)

Let's sort this out a bit:

You've had ON twice (I'm assuming this has been formally diagnosed, not you thinking you had it, but determined to have had it by an opthamologist (or other doctor)?)

You've had MRI's of your brain and spine. While lesions didn't show up in the brain MRI, there were lesions evident on the spinal MRI.

Your GP and opthamologist think you have MS (you have lots of other clinical signs to support their opinion).

Seems to me that you need to continue to see the neurologist, need to set aside your fear of being made to feel insignificant, and continue to get MRI's of your brain.  And continue to tell the neuro of new or worsening symptoms, and continue to undergo testing.  Clearly there is something wrong -- it's not part of "conversion disorder" to have ON, but I suspect the neuro is watching and waiting to see if you have new symptoms, or worsening symptoms, before finally calling it what it is. 

If I were you, I'd re-schedule the MRI, and go through with it. Even if it does come back "negative", it needs to be in your record that you are continuing to have symptoms.  You can ask your counselor to be in touch with your neuro to report that he doesn't think it's an emotional or psychological problem. Sometimes doctors talking to doctors are more credible than a patient trying to say the same thing.

Posted 12/15/2006 3:46 PM (GMT 0)
Hey Dvmtobe

I agree with Uppity. Move forward with the MRI and follow this thru...no matter the feeling u get from the doc. When it comes down to it u've got to take the steps needed to care for u'rself. If u've had signs and symptoms..and u have...there's just no way around it. If u don't have the mri done u'r left with that question mark. Yes, docs can certainly make u feel like one in the crowd at times, but that doesn't mean u'r concerns aren't founded. Don't let that stop u or hold u back when it comes to caring for u'rself. Uppity gave u some great advice and i hope u'll move foward and continue to be proactive. U know something's wrong and one doc telling u it isn't so doesn't mean u'r symptoms go away or that u have to stop on that. Hang in there. Keep pushing and get this done for u'rself.

rhonda
Posted 12/15/2006 4:09 PM (GMT 0)

You are absolutely right.  I have been telling my husband that I am done.  Done seeing my neurologist.  Done with tests.  Done with doctors. I guess I really can't be because clearly something is not right. 

The ON was diagnosed by an opthomologist both times -- this second time, I was even seen by a neuro-optholmologist who also said I had ON.  I am pretty sure that the last time I was into the neurologist, they suspected that I did not even have ON. They actually called my opthomologist and gave him a hard time for prescribing steroids for the ON (Mind you he did start me out on oral steroids).  My opthomologist told them that he even had pictures of my optic disk when it was inflammed and swollen! 
I agree that I just have to get past this fear and continue with my neurologist. They are a good group and likely the best in the area.  I have rescheduled the MRI for late January and I have also begun to see my counselor regularly.  I think that my GP is frustrated as well.  She keeps telling me that I need to follow-up with a neurologist.  I just really get the feeling from my neurologist that they just want to get rid of me.  This is especially hard for me because I am the type of person who does not see a doctor unless it is absolutely necessary.  Just recently, I walked around with pneumonia for 10 days before I finally broke down and decided I needed to get some care.  I am working on this issue right now and have started to practice good self care.

I guess from a medical stand point I don't understand this either.  I don't understand why I have clinical ON but no evidence on MRI of optic nerve inflammation?  Is that possible?  I asked my opthomologist the last time I was in if he was certain of his diagnosis and he said absolutely and he showed me the pictures of my optic disk and how it has changed over the past 8 months.  It is all just so frustrating and confusing to me. 

Thanks for your words.  I know this is what I need to do, I just needed some support and words of encouragement to keep going in this process.  It really does help to hear from you all :)

Posted 12/15/2006 4:51 PM (GMT 0)

Hi dv,

Read my posting from yesterday 'mri diagnosing 1st symptom' or something like that.  That may help some answers.

There's nothing worse than the unknown and we have believed that since childhood now as adults we known that bad things actually do exist.  MS is an elusive diesase.  You can always change neurologists until you find someone you are comfortable to work with.

Good luck to you.  Remember stress causes ms and ms causes stress. 

Posted 12/15/2006 5:38 PM (GMT 0)
Optic neuritis doesn't always show up on an MRI, but as you've seen, it clearly shows up in an opthamologists office with the cameras they use. Presumably the opthamologist can forward those pictures to the neurologist to show him the evidence.

Neuros are notorious for poor patient-doctor relationships. They're more "clinician" - -they like to diagnose, but not treat, patients. Once you get the diagnosis, you should talk with your regular doctor and see if he is willing to be your major medical caregiver, treating your MS with consultations from the neuro.

You might want to make sure the opthamologist has sent the pictures to the neuro, before you see him again in January.
Posted 12/15/2006 6:20 PM (GMT 0)

Uppity,

Thank you so much.  Your advice is invaluable honestly.  You are right.  I need to organize things and get my neuros some concrete evidence that they can think about.  I will ask my opthomologist if he will send those pictures and my records to my neurologist AND I will get the repeat MRI.  Even if is negative, I know there is something going on as I do have a diagnosis of ON.

I had thought recently about asking my GP if she could manage me.  I know that she gets reports from my neuro.  I am not sure if she got the last one stating that I had a possible "conversion disorder".  But she has told me in no uncertain terms that she feels fairly certain that I have MS and that I am NOT crazy.  I did not realize that it could be a real possibility that she could manage me medically. 

I will also try to get some communication from my counselor to my neuros so they have some proof that I am not crazy.  Honestly, I see the neuros point.  I do have a history of mental illness, but to me an eating disorder and a conversion disorder are two very different things.  An eating disorder is conscious decision...an addiction if you will.  I have addressed the issues leading up to and perpetuating this disorder in detail many years ago and have been living a normal, happy and healthy life (aside from the various neurological problems at hand :-) ) since.  A conversion disorder is a psyciatric illness and a diagnosis of exclusion.  They, to me, have not excluded the possibility of MS.  ON is not something to be ignored and I have proof of that diagnosis.  Not to mention the lesions in my spinal cord.

Sorry, just working things out for myself through writing.  I think I am going to start a journal.  Helpful for me and helpful for the neuros I suppose.

Thank you so much.  I now feel like I have some direction in this matter.  It is all still very scary but I know that I have to deal with it.  May as well deal with it and have some control over how the diagnosing proceeds.  Thanks!!!!!!

Posted 12/15/2006 7:09 PM (GMT 0)
Hi,

You mentioned spinal cord lesions, optic neuritis, but no brain lesions. There is a disease called Devic's disease or neuromyelitis optica. It is similar to MS in that it is a demyelinating disease but it only affects the the optic nerve and spinal cord while sparing brain tissue. Here is a link on it from the Mayo Clinic:

http://www.mayoclinic.org/devics-disease/index.html

Perhaps you should look into to this. It's important to differentiate between it and MS because the treatments are different.
Posted 12/15/2006 7:39 PM (GMT 0)

Mezazinine Thank you,

Scary how that actually fits. 

 

It talks about pain in arms and legs and spasms with muscle tightning periodically.  I have those symptoms and never thought much about them because I bicycle a lot and long distances and I am a runner.  I thought that they were just muscle cramps from exercising too much and from getting older.  Or I thought that they were just stress related but they are pretty bizarre and very painful. 

 

Interestingly, I am currently on Lyrica (pregabalin -- sort of like neurotin).  I was placed on that because I had shingles on my face and trigeminal neuralgia secondary to the shingles.  I have remained on this medication because it seems to be somewhat helpful for the neuropathic pain in my right leg as well.  Notibly, I have not had any of these muscle spasms since I have been on this medication.

 

Devic's disease kind of freaks me out but it certainly is a possibility.  They have been focusing so much on the fact that I don't have brain lesions but perhaps that is key for my diagnosis.

Thank you.  I will ponder on this for a while

 

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