To Quix - Any inpute would be helpful

To Quix

This is pretty much what I have had tests/symptoms

2007 MRI - because of migraine but wanted to rule out anuresym (dad had anurresym)
have been on Topomax (topamax) and Amerge
(50mg 2x a day of Topomax (topamax)) has never been increased.
Amerge as needed
migraines always on left side
June 2009 visit - been having visual broblems with left eye and cognitive issues
(visual issues not with migraines)
cog. issues loss of memory, cant find words, words come out wrong
visual issues my eye was itchy and would blur up
June 2009 had MRI w/o contast (came back with 20 foci of T2 and FLAIR hyperintensities)
July 09 appointment was my follow up from MRI (but never reaad me my results)
I had looked up visual disturbances/blured vision on internet and it brought me to MS sight so I asked him at this appointment could it be optic neuritis? THEN he found my MRI results and said "funny you should say that" Still never read my results. Then said nothing to get in a tizzy about, I'm not ready to do an LP yet.
Let's follow up in 4 months. So on my wy out of the office I got a copy of my results.....
This Brings us to October1 for my follow up
I had listed all the things that had been going on and I no sooner got numb out of my mouth and he said migraine..do you want to stop your meds?  I said no? okay see you in 4 months...if anything comes up call me.
I did call him and demanded more tests and he say me and did an EMG on 10/27/09
he wanted to do spine MRI but thought the Ins.Co would deny.
He is sending me to physical therapy for leg paresthesia.

Current symptoms include:
Since August 2009 my left side has had numbness and tingling with shocks in feet that come and go, I have recently experienced some cramping in my left foot (bottom of foot) which I think is called a spasm but since I can't bend foot up or down, my leg left is stiff in thigh and calve and have difficulty climbing stairs and walkng is tiresome. Every once in awhile my hand will tremor while holding something though this is not to to often, I'm always tired and I get ococassional twitches in hand and leg. I have had pain around my torso tightening but I contribute it to stomach issues...

Past history
Heat seemed to kill me this summer (I love the beach and sun but could not handle it this year, I got a weird rash from sun bathing even with SPF on , difficulty sleeping
Poor sex drive for last year and a half ,Hx. stomcah issues (diarreah (diarrhea) and constipation) I have been told I have IBS colonoscopy clear
Hx. of Epp. Barr Viris, Have been told Chronic Fatigue Syndrome.

This is all I can think of...
I'm sorry if I'm confusing...I have a hard time putting this in order.
Jib

[sllowe]

Hi Jibjen,

I don't think we've met yet. Hello.

I see you ask for Quix in your post and hope you don't mind me popping in with some thoughts.

In your next steps it may be helpful to be seen by a neuropthamologist and find out what is going on with your vision - the documentation would be helpful to your neuro.

Migraines can cause brain changes.  Did they Dr. think the migraines caused the T2 hyperintensities?  It's oftentimes the clinical evaluation that will encourage the Dr. to order MRI of your spinal cord. Maybe you can ask him what led him to consider it. If MS is suspected and you presented to the Dr. with symptoms consistent with spinal cord lesions, the Dr. could work on getting the test approved with your insurance.

Though many MSers have atypical lesions, Drs do look for the type of pattern typically caused by MS. Do you have results from all your tests? With your history of varying diagnosis (EBV and CFS), etc.

We have a health page to help with a timeline if you were interested in doing one.  It can be confusing to describe what is going on and we've found the timelines to really be helpful.

Wish you well with your  PT,
-shell

[jibjen]

Hello,
I do not mind you popping in at all..and it's very nice to meet you ;o) I think I need to start by saying that I have absolutely no clue on what my neuro is or is not looking for and this is probably my fault due to the lack of asking qustions....He has not gone over ANY tests he has done on me......or what migraines can or can not cause.....I really have not been explained anything. I had to figure out my MRI report on my own. I have learned a lot from the lovely people here o this forum.  The EBV and CFS was done over 20 years ago..He has not gotten my full hx. from other doctors..he is just working from current symptoms.He has not even taken any blood from me.  I think a timeline would help me..especially if I need to start with someone new...I guess the main question at my next visit is what are you looking for.

I appreciate your help! You are so kind.
Jib Jen

[Udkas]

Hi there,
Migraines can cause an array of confusing symptoms that can mimic MS.  Many eye symptoms can be caused by migraine, this can include double vision, blurry vision, pain and pressure behind eye, twitching, numbness around eye.

MS can often present with eye symptoms and optic neuritis often being the first symptom of MS  SO YOU NEED TO BE EVALUATED by an ophalmologist sp?, often with ON you get like a pain at the back of the eye on movement and the colour red can appear washed out, but you do need to checked for this as migraine and ON symptoms are similar just to confuse things.

Have you had  VEP test done as this often detects a problem with the optic nerves?

Migraines can be responsible for the feeling of not being able to find the correct words, mucking up your speech, I do this all the time when I am getting a migraine, pre migraine, my sentence structure comes out muddled or wrong and I seem to get brain fog.  Remember too you can get migraine aura (symptoms of a neuro nature) without headpain.
Also you can get migraine and have MS as well and sometimes migraine can be a presenting symptom of MS, I think migraine just confuses the issue more for us and the neurologist.

As for symptoms of migraine:
Aura can include, numbness, tingling, usually one sided but not always, visual disturbances in vision, even short term loss of vision completely, stoke like symptoms, vertigo, electric shock like symptoms, burning, speech problems, twitching, obvious headpain but not always present.

As you can see migraine can cause a lot of symptoms that are the same as MS, this is why you need to be seen by a MS Specialist and be evaluated properly.  Maybe a second opinion is in order, if you have lesions on your MRI I would be wanting to know where they are, if they are typical of migraine etc. Somethings you describe like the heat etc. does not sound like migraine to me but I am not an expert, but I do get weird migraines.

Sorry this was so long, hope it helps.  I would ask your neuro what he is thinking and why he is thinking this, so you understand.
Best of luck
Udkas

[Quixotic1]

I'll be right on this when I feel better.  Having a weak day and it's hard to even hold my hands to the keyboard.

Q

[jibjen]

Hi Quix

Oh please don't worry...Rest and be well.....This forum has some amazing people! I appreciate you taking the time and energy for this message!

Take Care
Jib

[jibjen]

Hello,

Sorry to bother you but i want to take your advice on keeping a timeline from your earlier post to me..Is that the MS tracker??? or something else I am missing..I started one on the MS tracker but I don't know if I am doing it right? It is a very good idea..I was putting notes about my appointments and stuff in the journal section..Sorry I may have misunderstood you on where to enter my info and be in the wrong thing.

JibJen

[Wobbly]

hi there, welcome to the forum.. Have you checked the Health Pages yet...its the link on top right side of this page..lots of info there.. my timeline is written out.. dates, symptoms..when they started, how long lasted... and if they came back..etc..  

just wanted to say hi and I'm sure others will jump in too.. take care
wobbly
dx

[jibjen]

ooooooooppps...

Hi..Thank You.It's nice to meet you.

I have and they are great! I have been doing a personal timeline journal of my own....I actually did the tracker ..can I delete it?

JibJen ;o)
Thanks for your help

[opie74]

HI!

Some of your symptoms sound much like me. I also have migranes (migraines) and symptoms that are definately not migraines.  First thing, I took the Topomax (topamax). I had such bad side effects that the drug company reported my case to the FDA.  That being said, those side-effects were much like my MS symptoms.  I wonder now what was causing what. If the Topomax (topamax) is not getting rid of the migraines, get offthat toxic stuff! I was having speach difficulty, leg cramps, forgetfulness, andthe list goes on.  I would be hard pressed to determine what symptoms were form the "dope-a-max" and what was from an underlying condition.  Ok, that is my opinion, but I thinkthatyou should talk to your Dr. about switching your mg preventative.

Just some food or thought.
OpieAnn

[sllowe]

Not being a bother at all.  Here is the HP on it:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

I've not mastered the symptom tracker yet at all.  You'll likely be a pro at it before I'm able to get any of my symptoms on it. ha/ha

Once you get your timeline going feel free to post it back on a seperate post. Just be sure to include in the title the post that your working on the timeline and need some help or another set of eyes.

ttys,
shell

[jibjen]

Thanks a bunch shell..Have a good day!

Jenny

[Quixotic1]

I see that you have gotten good discussion on things.

The first thing I want to say is that migraine is being used here to explain a lot of persistent symptoms.  When something is present for weeks at a time, I have a very hard time believing it is all due to migraine.  That said, I am not an expert on migraine, but here it seems to be used to explain everything.

I am gathering here that a lot of your new symptoms are lingering for a long time through and between headaches.  Is that the case?

What your neuro can't explain he is making light of, eg, the possible optic neuritis.  To imply that you might have optic neuritis, but he's not going to get into a tizzy about it and is not ready to do an LP yet is nuts!  By putting the two together he indicates he has thought about MS.  So, now let's look at this.  He has a patient with obvious migraine disease, who has a brain full of T2 lesions, and now has symptoms suggestive of optic neuritis.  You also have had an increasing number of symptoms, like the ongoing (??) stiffness of your left leg, the spasms, and the fatigue.  The summer's severe heat intolerance is nonspecific to MS, but should raise the thought of it also.

The stiffness sounds like spasticity.  If this is the case, then it is not the result of migraines unless you have suffered an actual stroke.  Also, with the stiffness localized it suggests a spinal cord lesion.  Have you had an MRI of your spinal cord?

Yes, migraine disease can cause T2 lesions, but it does not cause optic neuritis, and MS has popped into his mind.  Since something more than 40% of people with their first attack of optic neuritis will turn out to have MS (and a much higher number if there are lesions on the MRI) he is now obligated to do the work up for MS.

At this point, like the members above suggested you should be referred to a BIG eye doctor.  That's easier to spell than ophthalmologist.  A neuro-ophthalmologist would be better.  Sheesh! What word in the world has "pthth" in it?  Shell also mentioned a VEP - Visual Evoked Response - that can show if there has been significant inflammation of the optic nerve.

Then, a good rule-out of the mimics of MS needs to be done.  This is typically a raft of blood tests like an ANA, ESR, VDRL, Lyme, HIV, ACE, Ceruloplasm, and sometimes others.

Your neuro is apparently assuming that he can account for all of your lesions with the "migraine" diagnosis.  I don't see how.  I would bet that in those of us with MS and migraines, our neuros can only guess which of the lesions are due to which process.  But, any diagnosis MUST account for not only the lesions, but the symptoms and the abnormalities on the exam.

Has your neuro done a good and thorough neurologic exam at each visit where you have complained of new symptoms?  This is mandatory to see if there is evidence of damage to the central nervous system?  For instance, what are your deep tendon reflexes like between the left side and the right side?  Is there decreased sensation where you complain of numbness and tingling?  Did he look deep into the back of your eyes to look at your optic disc?  Did he assess the muscle tone in your legs to look for any signs of stiffness?

If he did not, then he is not worth his salt.  He is the physician to whom you have trusted the care and monitoring of your nervous system.  If he fails to check out your complaints with appropriate exam and tests then he gets a FAIL.  You also need to get a copy of his office notes to see what the exam has showed.

I agree that you need a second opinion from another neurologist who does not have tunnel-vision.  It is clear that you feel that he is not taking the new symptoms nor the MRI seriously.  That is legit.  We can mostly tell when our docs do not seem to be paying attention.  Remember:  What we need are doctors that LISTEN to us, LOOK at us and THINK about what they find!

Does what you have told us scream MS?  I don't know.  There are suggestive parts, but more questions than answers.

I hope this helps.

Quix

[jibjen]

Hi Quix.

First off thank you for your input as I know you have not bee feeling well. and yes, I have gotten some great feedback from this forum, including hints and info on the importance of craeting a timeline.

Migraine does end up being the blame although I beleive I was told by someone in this forum that migraines do not cause demyelination...do you beleive this to be true as well?

Yes, My symptoms have been lingering or a long time regardless of my migraines or as you say through and between headaches.  My symptoms are either already there before my migraine comes or they do not stop when my migraine stops.

On my last appointment 10/17/09 he did an EMG and ststed he wants to do MRI of spine but sadi the Insurance Co. will probably dispute....(no disscussion of what EMG showed. He did it himself. (I don't know if he knows the results right then and there or if there is a report that needs to be generated)....He then said asked if i ever went to a chiropractor. I said no and next thing I know he is sending me to Physical therapy fo leg paresthesia. Nothing else said about MRI

He has not suggested a VEP - Visual Evoked Response. I went to eye doc who did the eye test with the dye to check for diseases..The put dye in my eye and took a picture...Is that the same?

No blood tests have been done although I had another doc rule out Lyme and I have had an HIV test in past by other doc were both neg.

My neuro has not done a good and thorough neurologic exam at each visit where you have complained of new symptoms?  He checked my knee reflexes and compared my snse of feel from one side to the other..The only 1 neuro exam I had was inital in 2006. He never checks my eyes....


I agree with you that I need to begin searching for a new doc for second opinion.. I appreciate your input and the time it took you to reply..

I have also started a timeline as suggested by some memebers of this forum...I went and got all the written reports from all my MRI's which were never read to me.. demyelination disease and MS were suggestive on MRI back in 2006..
and my lesions have increased.....

I know you are not feeling well..It meant a lot to me ;o)

Thanks Again
Jenny

[Quixotic1]

No, migraines do not cause demyelination.  They cause ischemic (lack of blood) lesions, like diabetes and hypertension.

It doesn't sound like your doc is ttempting to really pull all of the info out and together like he should.  So, my and everybody else's recommendation is that you see someone else and see if a better and more well-rounded (that is less narrow-minded) assessment can be made.  There is a lot of info that still needs to be teased out of you.

I'm feeling fine.  I just have bad days here and there, but thanks.

Quix

[jibjen]

Thanks Quix,

I appreciate your time! I am glad your feeling  better.. I hope you have more good days than bad.

Be Well
Jenny