Not sure what to think!

[twist330]

I had my 2nd opinion neuro appointment 2 days ago and I'm not sure what to think of it.

I have to point out that this was arranged by my first neuro who asked me to have a second opinion.(after test results which had come back all normal) apart from MRI which showed  a single T2 Hyperintense focus in the right parietal subcortical white matter which is non specific His examination showed I have brisk reflexes, and right foot reflex a bit odd. I also have a dropy eyelid.

The 2nd opinion neuro started from scratch. He did not have my notes just the basic info from neuro number 1. He was very pleasant and having taken my history and examined me, He didn't comment on his examination of me at all. I asked about the 2 MRI's I had had which showed a single leason but have been reported in two different areas it would appear or maybe they had just been describing the same thing in a different manner, he said that he had not looked at the MRI's but that UBO that are only on one picture arn't anything. Which confused me somewhat.

He then said that he did not think that my symptoms were anything serious. Though he was truthful enough to say he didn't know what the problem was. He did not think it was MS as my Symptom where not consitant with that and they come and go which I could not understand as the tiredness,numbness of my limbs and right side of my head along with the droy eyelid I am expierencining has gotten progressively worse over the last 8 months with no let up. The only thing that has improved is, I had jerks which seem to have calmed down to just mucsle twitches. ( I have to admit I wondered if this was due to the limbs feeling so numb!)

Both of these neuro seem to be under the impression that because the tests have come back normal I must now be feeling better! thing s will turn around.ugh! I did point out that things were getting worse not better.

We talked about stress and I think he felt that it was an unlikleycause, but was pleased I was prepare to see a neuropsychologist which had been arranged by neuro number 1!

On the plus side he did talk about medication and sugested Gabapentin & Amitriptyline but this would need to wait till after SSEP tests that I am having in 2 weeks time and it would need to be done in conjuction with neuro number 1 as I was still under his care. I feel I need to do this, as at the moment I get no relief at all. I have tried to point out " I don't care what's causing it just give me something to make it stop".

So I really didn't know quite what to make of it. I have this SSEP test and I should see neuro number 1 again May/June time although he dose normal phone me to give me results. and the neuropsychologist will probably be in June there is a long waiting list too see him and he dosen't work privately.

So at this point I'm still not sure what I've achieved.

[twist330]

Thanks all,

I've had a quick look at myasthenia gravis, I can see some  similarities. I have had an LP, EEG, Brainstem potentails. The only blood I have had taken was when I had the LP. I did bring this up at one of my appointments but it seemed to fall on deaf ears. He simply pointed out that the LP was normal. I have this SSEP coming up which I think will show something as it is the most related test to the symptoms I am having in my legs and arms.

Just to say this forum is keeping me sane. Thank you.

[biowham]

Anna has said it well, and Stephanie is right that you should get checked for MG for your ptosis (droopy eyelid). What you say about the neuro's comment about the "UBO" doesn't make any sense at all. I'd write that question down--"Why did two different MRIs seem to identify a single lesion in two different places?" and make sure you get a clear answer to it.

I also find it odd that he's talking about Rxing those things without doing various ruleouts via bloodwork, etc. What bloodwork have you had done?

Bio

[ack65]

Hi Twist,

I am also in limboland with non specific lesions in my brain mri and no one ready to make any diagnosis, so I can relate to your frustration.  In fact, I said the exact same thing to my husband after my appt's with nuero #2 and Rhuemie #2 (who undiagnosed Fibromyalgia), that I felt further behind as now there is NO reason for my symptoms!

I have found support here to carry on and keep searching for answers as elusive as they seem to be.  I also said they could call it whatever they want but I need some reatment and help for my symptoms and that seems to have helped me get some better pain relief with increasing the Amitriptyline and some codiene until neuro #2 suggests something else.  I have follow up on April 19.

I just wanted to say that your symptoms are definately not "nothing" and I am sorry you are having to go through this.  Keep pushing for answers and don't give up on yourself.  I mean who knows better how you feel - your dr or you.  It just infuriates me when the medical community dissmises our suffering because we don't fit neatly into the typical category.

I was sent home once form the ER being told I was having a panic attack which later showed up as needing emergency gallbladder surgery because I didn't present the typical gallbladder symptoms.  My point - dr's don't always get it right.  It might be time for another opinion not connected to your other dr's.

I am glad you are getting some symptom relief for now.  Hoping you'll find some answers soon, Anna

[steph74]

Hi,  This may be something that's already been checked by your doctors, but with the droopy eyelid, I wonder if you've ever been checked for myasthenia gravis (MG)?  I think there's a farily accurate test for that.

Stephanie