MAV or MS

HI,
I don’t know if i belong here or not. I am on topomax with the assumption that my vertigo and balance problems are all related to MAV…but I just have this feeling (or anxiety disorder?) that I have MS despite clean MRI’s. I trip on stairs b/c I don’t know where my feet are. I have all these other weird symptoms…somedays my vision is bad, like there isn’t enough light to see well enough, but if there’s too much light, it’s too bright. My legs are often spastic and I can’t relax them. I was on bedrest basically 8 mos with a complicated twin pregnancy and that’s when everything started and went to he**. They are now 16 mos old and I am so depressed. I hate not being able to function…I used to be so active. My neck is so tight I can hardly turn my head somedays. The neuro says that is what sparks off the migraine activity and balance issues. I’ll admit the balance issues are better, somewhat. But, I am just so depressed. Somedays I think if I didn’t have the babies I’d find a way just to be…gone. This is just no way to live. I hate this. The feeling in my fingers is off (another reason I think I have MS). Docs don’t listen.
ugh. I’m whining. anyway…thanks for reading. :frowning:

Whatswrong, I’m sorry you’re in such a muddle over your condition. I think we can all most certainly say we’ve had unfamiliar and scary symptoms at times. The feeling you have of anxiety over your condition is not helping you feel any better either.

I think your key (as has been all of ours) is proper diagnosis. If you’re not happy with your neurologist, then there may be others more knowledgeable in the field of of migraine and the variant MAV. I didn’t have a clear MRI, which actually showed up white spots on my brain, so my diagnosis was made more complicated. The neuro said his feeling was that it was MAV, but it could actually be MS. I felt, as it seems you do, totally freaked out and felt absolutely overwhelmed with that possibility. I then sought a second opinion from a neuro who specialises in MS and he said my symptoms were atypical (not typical) for MS, but noone could be completely 100% sure. I returned to my first neuro, still extremely anxious and it has only been over time (last 20 months) that my symptoms have manifested themselves into a condition more condusive to MAV. My neuro said he is treating me for MAV only now, and said that these conditions don’t usually deviate once their path is set, so I can fairly reasonably consider this diagnosis as accurate as can be.

Having said that, I certainly sympathise with you and feel that you have to live with the condition and its symptoms for a while in order to be satisfied with the diagnosis. I still have doubts now and again, but I realise that I have no control over my future so it aint worth too much worry (easier said that done!!!). I recommend you seeking out specialists in these fields, or if you have faith in your current neuro, be sure to lay your cards on the table and tell him your concerns. Sometimes the worry itself, can drive you over the edge. Take a deep breath, remember your MRI’s are clean and remember to ask questions. Also, time will tell you more.

take care
Dizzyblonde

I also thought I had MS. I have a lot of strange symptoms, some similar to yours, like tripping on stairs when I’m going down. I’ve heard others on this board mention that one. And the vision thing is a real problem. When my vision is tested, it’s actually 20/20, but I swear I feel like i’m looking thru a coke bottle all the time. I can barely focus on anything and am always squinting. I don’t believe anymore that this is MS - i have a clean MRI and the progression has not been typical of MS with the exacerbations and remissions.

Good luck with your future work-up. It’s hard enough to have to cope with these symptoms, and insecurities about what the future holds, it’s even harder when you’re not sure of the diagnosis and treatment.

I’m glad you have your kids to keep you going - hang in there - i’ve heard of so many people getting better.

All the best,

Julie

Thank you Julie and dizzy for taking the time to respond…

My neuro is supposed to be “thee best” when it comes to MAV, that’s why I got referred to her by the Nat’l Dizzy and Balance ctr.

My husband wants me to quit taking my topomax and see if the balance problems get worse. It’s weird b/c somedays I have fluctuations in symptoms and I wonder–is that exacerbations of MS? The neuro I see is also supposed to be a specialist in MS.

I have a medication review with the nurse practitioner for my neurologist next wk. The nurse practitioner seems pretty patient with me and I decided I am going to write down all the weird little subtle symptoms that come and go that make me think I have MS and not MAV and ask her to basically defend her case as to why I have MAV.

If I still don’t feel secure, I think I’ll head over to a MS specialty clinic for further opinion. I guess. I hate the time will tell thing. I am very impatient and black and white about things and the thought that I have a progressive disease has me so severely depressed I am barely functioning anymore, despite being on antidepressant and topomax (which is also used as a mood stabilizer). I’ve given up on furthering my career. I fight with my husband. I’m a general scrooge. This is so NOT the journey I imagined for my life (does anyone??).

The Question and Answer option you are going to follow with your nurse practioner is absolutely the best way to go. Any symptom that you question large or small, should be expressed by you at the earliest possible opportunity. I got so distraught with the MS prospect that I literally just lay there at night, waiting for symptoms to present themselves and made myself sick with anxiety and worry. I did list them all and rang my specialist on a number of occasions, but he reasonably dismissed these symptoms with credible arguments. It did make me feel better.

I recommend you ask more about MAV also and how your symptoms relate to this condition. This might help you to understand what you’re going through. On my next appointment with my neuro in Feb, I’m going to ask many more questions about MAV, too.

Hang in there, there are better times to come!

Dizzyblonde

When I first got hit with this disabling condition, my husband and I went through a very rough time. We were both frantic about my condition, our future, what to do about it and how to cope with everyday life. We never thought it would last long, but i’ve been housebound, almost bedridden, and nonfunctional in terms of taking care of things, for 16 months now. We fought. We stressed and despaired. We raged about it - the unfairness of such an inconceivable condition. I really thought I was dying in the beginning - “no one can be this dizzy and still exist!” Little did I know.

We have learned to cope with our new limited life in many ways. We are much more accepting of what is.

Since my diagnosis, and learning about MAV, I have hope for treatment, but, like you, I often feel i have been robbed of my life and have little to look forward to regarding my future.

I have had some improvement with Zoloft, but I have the feeling I will be adding Top in the not too distant future.

I really feel for you, you sound so young, with so much ahead of you - i really do hope you find some treatment.

All the best,

Julie

Whatswrong- You will get through this. I’ll just about bet there aren’t many on this board who didn’t at one time or another feel the fear of possibly being stricken with MS.

Our symptoms are just plain scary and absolutely life-changing. Unfortunately, we aren’t just your “average migraineurs”, if you will. We are very difficult to diagnose, and even more so to treat.

I agree with Dizzy - ask questions. Get as much info as you can about MAV, and like you said - question them - make them tell you WHY its MAV and not MS. Read as much as you can about Migraine, like Dizzy said, the more you know about it, the more you will probably be able to relate your symptoms.

As Julie said, you will learn to cope with your limitations. You really will. The first step though, is getting a diagnosis that you are comfortable with, so you can go forward doing all the little things to help yourself. The fear and the uncertainty is absolutely the worst. We have all been there. But you CAN and WILL get through it.

It IS life-changing, but its NOT life-ending, once you’re comfortable with the diagnosis, you’ll see.

Kim

Hi Whatswrong

I can completely empathise with you. When I started getting my strange symptoms, I was absolutely convinced I had MS. It’s taken almost 2.5 yrs, and 4 (yes 4!) neurologists telling me that it’s not MS, for me to start believing I don’t have it.

I found that the depression/mental anguish I experienced was actually worse than the physical symptoms I was experiencing, and still do experience!

So my advice is - seek a 2nd opinion if you need reassurance (I perhaps went a bit too far with 4 - that’s how concerned!), but you should really try and trust your neurologist - after all, they are the experts and see MS cases everyday.
All the best,

Cat

I agree that most people have wondered about MS, and most of us have gotten discouraged.

The tingling in your fingers is a very common side effect of topamax: it’s almost expected–parasthesias.

I agree that asking ALL of your questions is the way to go.

Hang in there. It does get better.
Kira

Wow, thank you all for taking the time to respond. Today I had my med check with the nurse practitioner for my neurologist. She is such a rare practitioner in my experience. I told her how my vision seems dim at times, the sensory changes in my fingers, the tight choking feeling in my throat, the dizziness, clumsiness, inabililty to keep up with my twins.

She actually thanked me for bringing it all up and asked me to keep bringing up my symptoms to her in the future and that right now she is not worried about MS b/c my brain and spinal MRI’s are normal. I told her that in MS chat rooms, people say they have no lesions but still have MS and she said that she is still not thinking that I have MS. My symptoms also can be explained by 1)the topomax 2) migraine, and 3) neck issues. My neck is very tight. I was on bedrest for 8 mos of my pregnancy and became extremely deconditioned. Then I am a small build and this all just came crashing together to create the perfect storm.

I just realized I forgot to tell her about my tight leg muscles that I used to have, but there’s always next time. I guess I just need to surrender to things a bit. Trust her. Trust my Phys Therapist. My chiro used to believe I had MS, but she has laid off that. I did go see a neuro when all this started and he said I had “stress or MS” and I never went back to him b/c I got referred and funnelled to a bunch of other physicians in the meantime. It’s just so hard to trust. For me.

Final answer from the nurse practitioner. Document my symptoms, come back in 3 mos, or come back sooner if things get really bad and they’ll do an MRI.

whatswrong
on topomax 75 mgs

Hi Whats wrong-

Glad to hear it sounds like your appt. went well. Just real quick- I wanted to say, the first neurologist I saw had never even heard of MAV, well, that might not be true - he did however, feel that my symptoms were anxiety related, and that I was under too much stress. He told me he felt I definitely had Migraine (the auras I experienced sold him on that). But basically, I just needed to relax!!!

Anyway, I just wanted to say, keep a daily diary of everything. Its very helpful, and will help you see any patterns or cycles. (Write down everything - from your meds, to every food you eat, to your mens. cycle, and of course all the strange symptoms) Its a pain the rear, but can be very helpful if you do it for a couple months or so, and the other thing -
very important (if you ask me). Read as much as you can about Migraine - its incredible the symptoms it causes!!! I get a very stiff neck for 2 or 3 days when I’m migraining (no headache) but my vision gets dim also, and I can’t read small print. To go outside without sunglasses is impossible, because sunlight about kills me. I’ve told that to people before and they have looked at me like I’m crazy - “I thought you said your vision was dim???” Hard to describe, but true.

Anyway, keep the faith!

Kim

I just want to emphasize what Kim had to say about migraine -

“it’s incredible the symptoms it causes!”

It’s true - i was describing this weird stuff to one of my many docs and he looked at me and said “migraine can cause some VERY WEIRD aura!”

I thought to myself - yes, I know, i haven’t even told you the worst of it - it’s just so indescribible.

And like Kim said, Keep the faith! (and keep us posted) It’s so good to find a forum of people who are in the same boat (as much as I HATE the feeling of being on a boat all the time) :slight_smile:

This is certainly interesting. When I was initially hit with this in 2005, I took some time to catalog all of my symptoms, and then punched the information into a computer on one of the health-related websites. First thing that popped up: Multiple Sclerosis. I broke out in a sweat. Scary.

Thankfully, the MRI’s and other neuro. tests eliminated that and some other neurological ailments like myasthenia gravis, Guillain-Barre Syndrome, although I actually sometimes wonder if this might be as bad or worse as some of the above ailments listed (LOL).

Hang in there and keep trying.

MSDXD - did this website come up with migraine as a possible diagnosis? Just curious.

Julie

No. M.S. was #1 on the list. GBS was #2. Neither Meniere’s nor MAV (variant) popped up.

Additionally, migraine was never mentioned by any practitioner until August of this year. In retrospect, it’s possible that I was having something resembling hemiplegic migraine attacks early on in 2005, because one side of my body would go weak, and it wasn’t stroke.

it’s amazing to me that, over the years, many clinicians (mostly nurses) would “mention” migraine in passing, but never pursue it. I don’t think they knew how to pursue it, or how to treat it, but somehow they knew that it was a possibility. the interesting thing is that, after my big crash, i went to see a naturopath, in desparation. She pretty quickly said “this could be migraine” For some reason, I started crying. My gut knew that she was right. Unfortunately, she also didn’t know how to proceed. it’s 5 years later and I finally have the diagnosis that I have known was right - now if I can only get some effective treatment.

Thanks for the input- it’s all very interesting.

Julie

The difference in the quality of care you receive can be stunning.

This doesn’t specifically address migraine, but…

medicalnewstoday.com/articles/90676.php