Latest Neuro Appt. Plan of attack?

[hc1]

I had my follow up with my neuro today after having every test but the LP.  I was hesitant with the LP because I wanted to know what would happen if it was pos vs neg.  If it was the same I was not going to go through it...

So anyhow, my neuro says I have a "beautiful" brain, with one hyperintensity by a ventricle that is "indicative of MS, but could be something I've always had".   It has not changed in 8 years.  All my blood tests and EPs are normal.

My symptoms are mostly felt in my head (numbness, tingling, headache, dizzy, light sensitivity) and seem to be weather and hormone related.   I have had a few instances of leg and left arm weakness and fatigue.  

That said I'm down to complicated migraine or MS.  Which is where I've been forever.  So the plan is to try Nortriptyline to see if my symptoms reduce and have another MRI in a few months.  If that doesn't work to go ahead with the LP and if it's positive, go on Copaxone.  

Does this sound acceptable or should I be looking for another opinion?  Thanks all!!

[hc1]

Wonderful information Karry!  Thank you so much. I will do some research and figure out a plan of attack.  Thanks again!

[karryon55]

I just wanted to add that I was originally told that the lesions on my original MRI could be from migraines. I have since gone on to develop brain stem & spinal cord lesions so that theory went out the window. This MRI was also done on a 1 tesla machine as there were concerns about my infusaport in my chest. At the time they were looking at a couple of different conditions happening with me as my symptoms & clinical presentation did not fit the migraine theory alone.

All that said though I do suffer from migraines & when I was told that I could have silent migraines or a migraines without a headache I did a lot of research about it. I have been on magnesium & Vit B2 (Riboflavin) since then & I actually had no migraines (headache ones) for 6 months. It did take several months for these supplements to work & I still continue to take them today. I have however started getting a migraine during my menstruation again so it has since stopped working.

I know some people swear by the Riboflavin taken at 400mg a day not the 100mg as recommended on the label. This will make your urine bright yellow & must be kept away from the light so when storing it put it in a dark cupboard. The Magnesium should be a good quality or it will have a laxative effect on you. I use Magnesium "Citrate" but I think "Chelated" is also fairly absorbable. The highest recommended dose is what you are needing from magnesium but increase it slowly to allow your body to adjust. If you get loose watery stools then you are on too much &/or it's not being absorbed well.

I would definitely try some prescription preventative treatment for the migraines. Do some research on MAV or Migraine associated Vertigo & you might be surprised about this neurological condition. I find the best place for information is at the vestibular disorders association at :-  vestibular.org

There are certain preventatives recommended on this site for MAV which are probably more suitable for you than others. Migraine without a headache does not respond to other treatments so it's important you go on the correct type. You will also find there are many people out there who have this condition & can probably offer you more helpful advice on that subject.

This migraine variant is being dx'd much more lately so there is a lot of information about it out there nowadays. If you do have any uncertainties about this being the right or wrong dx in the long run then I suggest you follow up with a different Neurologist. I really hope you find some relief for your symptoms.

Take Care,
Karry.

[hc1]

Thanks for your replies.  I think I will try the migraine treatment, maybe add some magnesium supplements and go from there.  I appreciate the thoughts!

karryon55- Over the years I have had some leg and arm weakness, tinnitus and bouts of extreme fatigue along with the "normal" facial/head numbness, dizziness and disorientation without headache pain which sent me to the MS guy.   Sometimes I will be walking and I just feel like my legs are tired and I want to just fall where I am and not move any more.  

I also have bad TMJ and neck issues which I think can also be a factor in some of these symtpoms, but the neuro didn't seem to want to credit those.  

This all started over ten years ago with tingling and numbness in both my cheeks.  Then progressed to the addition of dizziness and disorientation and woozy feelings.  

[karryon55]

I am also thinking that if your MRI is unchanged after 8 years & that your symptoms are all typical migraine symptoms as well as all other testing being normal....I would have to be thinking migraine. This doesn't mean that you shouldn't get a second opinion if you are feeling unsure with this theory. In fact it's often a good idea to do this when there is any uncertainty.

Do you have any other symptoms other than the ones you have listed above? I think it would be reasonable to trial some migraine preventative treatments & see how you go. If you don't improve in the long run then I would find a new Neuro regardless.

Good luck with it.

Karry.

[supermum_ms]

I personally wouldn't be thinking MS is the more likely explanation instead of migraine, because your MRI's being unchanged in 8+ years would be unusual for MS. If apart from the untypical MRI's you still have normal neurological findings and not showing any clinical signs of lesion damage either, even though you have continued to experience sx's which are associated with migraines in the exact same time frame. To me migraine would be the more likely dx, rather than RRMS without the supportive or more suggest hard evidence.

I never think it hurts to get a second opinion, when you have doubts or difficulty accepting a dx but that is totally your choice.

Cheers......JJ