Neuro update

[tanyamt]

Went to neuro and his first question was why do u want the LP. My response was because of all my ongoing symptoms and new symptoms.

He did the normal exam which i feel i failed or didn't exactly pass. Walking is tough. Heels very very unsteady same on toes and same heel to toe. Noticeably weaker on right side. And coordination is off.  But he says it's normal.

i have watch myself progressively get worse and worse each exam at each appointment.  But i guess it's just me :(

For tests he says he will order another mri of brain. And evoked potential.  No LP ( o am ok with this) however I did ask for him to do the mri of spine at same time since in there anyway he said NO I said I would like to see if I have lesions on my spine he said the evoked potential tests would tell us that. Is this correct?

If this is correct it's not as good as a visual as to where the lesions are right.? I'm so angry with him!!

I think I'm going to have to fire him after these tests are done and I get the results because this is just ridiculous!  

[tanyamt]

I just get tired of hearing it from hubby and kids joking about it all the time saying it's all in my head even though they see what I'm going through. Sorry I jumped. I'm on edge with all of this.

Yes probably could use a good counselor!!! Thanks guys!!!

[supermum_ms]

I'm really sorry your upset!

"Just be careful that your not getting too focused on your 'symptoms' being MS and unconsciously creating a situation which makes your neuro start considering additional mental health involvement eg health anxiety, conversion disorder etc "

I didn't actually say it was M/H or point out that M/H is involved or even intend for you to even think 'I' was in any way imply it was, I was actually trying to give you a heads up.........it's really common for 'neurologists' to mention M/H when ever a patient gives the impression or is obviously concerned about MS.

I gather you've already had M/H mentioned by your doctor, but I hope you understand if it's already been mentioned, it's honestly going to be in your best interest to actually get your M/H appropriately assessed, so you can get that idea off your list of potential causes. The process of elimination is 'sometimes' the only way to a MS diagnosis, dxing MS can be very complicated when the evidence isn't black and white, so ruling out the MS alternatives is typically going to be helpful.

M/H is a legitimate medical condition that can mimic the sx of many medical conditions not just MS, and just like any other medical condition that is a potential alternative of MS eg Lupus, Diabetes, ADEM, Sjögren's, Myasthenia Gravis, Sarcoidosis, Lyme etc etc etc M/H is often also tested for and ruled in or out during the diagnostic work up for MS, um please consider how good it will make you feel to have the proof it's not an M/H issue when you've got it in black and white.

I promise i had no idea M/H had been mentioned already, or that you might be feeling a little sensitive reading M/H comments, if i'd known i would of avoided the subject or at least attempted to word things better.....

HUGS......JJ  

[aspen2]

yes, we deserve to know.  However, it takes time, unfortunately.  I've been doing this for 2.5 years.  Some encouragement ... someone wise told me it gets easier to deal with limbo after a year.

I didn't believe her .. but she was right.  I have found ongoing counselling extremely helpful as I've navigated all the crazy -- tests, neuros, etc.

Just an idea.  Look at it as protecting your mental health, because honestly, I'm pretty sure mine would have taken a hit without the extra help.  And I've never had issues previously.

Be well ... in the boat with you :).

[tanyamt]

I will be really happy if this is not Ms.  I just want him to do test like he has to exclude it or try and exclude it like we have with everything else. He has time and time again refused to do tests. For both my neuro and my GP I have had to ask for tests to be done to try and find out what Is going on with me. I should NOT have to that.

I'm fed up with both doctors. It's been over a yr. Everything else has been excluded it is down to MS and Migraines I would just like a diagnosis and move on.

Over past 3 years here are my symptoms

bladder incontinence
Constipation
balance issues
One sided weakness at times with tingling
Once sided face tingling with tongue
swallowing issues esophagus stretched
falling
heat sensitivity get weak very weak in shower
dizziness
very fatigue
memory loss

I  am sure there is more. In all the times I have posted I may or may not have put everything I have going on. We all have our own glitches. And sitting here posting is mine I get to rambling I forget things. I really honest feel this is MS . And to think that my doctor and someone on here is pointing out that mental health involvement is involved just really makes Me upset. I'm sorry. I know u mean well. I know your trying to help but that really hurts.

I have recently gone through a psych evaluation and was fine so I'm pretty sure this is not the case. I know my body. There is something going on with my body and I deserve to know what's wrong!

[supermum_ms]

Hi there,

I do get the appointment would of been very frustrating if it didn't eventuate as you thought it was going too but I've honestly been confused by a few things you've posted so please bare with me......

I don't think it's all that common for patients to ask their neuro for specific tests but generally for any doctor to schedule a spinal MRI specifically looking for spinal cord lesions, the patient would have to have some spinal sx's and or clinical evidence 'suggestive' of spinal lesion's or structural abnormality to even warrant testing. If there isn't the obvious clinical evidence, then it could be more sensory which may not be evident on a neuro exam if its subtle and an evoked potential would pick it up.

Evoked potentials are basically pretty common test but if it's not a visual evoked potential (EVP) he's scheduled, then it's usually not very informative in regards to dx's because whilst the Somatosensory Evoked Response (SER or SSEP) will detect sensory nerve function abnormalities, it's not going to indicate spinal cord lesions are what's causing the abnormality, just that something is.

A person will physically show the clinical signs of neurological abnormality eg clonus, hyper reflex, neuro bladder, Babinski sign etc etc and generally be visually indicating they have spinal cord lesions, even if their spinal MRI didn't showing the lesions, so technically your clinical signs would be your best indicator.  

It only makes sense to me for your neuro to ask the LP question in response to your comments, otherwise how would he even know you want to have an LP if you didn't mention wanting an LP during the appointment or talked to his staff about it but you don't actually need LP findings to be dxed with MS. If you had some evidence of deymelination but not enough, an LP can be used as additional evidence.

I had another look through what you've posted and i don't think you've actually mentioned anything that would not be consistent with complex migraines, so it might be helpful for you to go through all your prior test results and neuro reports to see if you actually have any evidence that doesn't fit with your dx of migraine. Some types of migraine sx can definitely mimic sx of MS and visa versa, this is a good article on MS mimics.

http://www.msfocus.org/article-details.aspx?articleID=18

Please keep in mind that i am genuinely trying to be helpful.....what do you think is probably going to be going through any neuro's mind, when he's got a patient who has been worried about MS since their dx of migraine because of on going and new symptoms but he doesn't find any supportive clinically abnormal neurological signs in their neurological exam and the patient is asking for tests he doesn't think they need?

Just be careful that your not getting too focused on your 'symptoms' being MS and unconsciously creating a situation which makes your neuro start considering additional mental health involvement eg health anxiety, conversion disorder etc

Try if you can to focus on your diagnostic evidence suggestive/consistent with neurological abnormality, be a little open minded about your migraine dx possibly being right and whats causing the symptoms you've experienced because if the evidence of a neurological condition like MS isn't there, your dx of migraine just might be the right dx....deep breaths, working things out really can take some time.

Food for thought.......JJ