Hello. My name is Dee and I am a new member here after lurking for a few weeks. Dr Rosenberg at Johns Hopkins gave me this website.
My long story has been posted under stories. In a nutshell, I was diagnosed with multiple sclerosis at Hopkins ten years ago. That diagnosis was confirmed at the Cleveland clinic MS Center and the Mayo Clinic. These three hospitals are considered among the best in the US. My diagnosis was centered on my extreme dysequilibrium and paraventricular white matter lesions on my MRIs. These lesions stayed the same size and number for many years and then last year they increased in size and number. At that time my diagnosis was changed to MAV and the lesions were attributed to that.
My question is whether anyone else has these lesions? Iāve read many of your stories over the weekend and I havenāt read that anyone else has these irregular MRIs. My symptoms continue to be dysequilibrium, fatigue and vision issues. My triggers are similar to what many of you havd expressed. Began Verapamil (80 mg), Zoloft (25 mg) and Ativan (1 mg) as needed. Sorry for the length of this email but comments and suggestions would be welcome!! Also I apologize for my many typosā¦vision an issue today!!
The clinics that you name are definitely at the top of the list, I would have to agree with you regarding how much I would trust their diagnoses. I am surprised about the lesions though. I was under the impression that part of diagnoses of anything migraine related was a clean MRI. I wonder if they are interpreting it as a sign of long term migraines?
My understanding is that demylenation (lesions) are indicative of MS. As I had optic neuritis concurrent with an early, major bout of MAV in 2002 I had an MRI (as optic neuritis is very highly correlated with MS). The absence of lesions on that MRI and on another MRI a couple of years ago have been used by my neurologist to rule out MS and confirm his confidence in my MAV diagnosis.
So, Iām confused as to your new diagnosis (while thrilled for you). Did they explain to you how they arrived at the MAV diagnosis despite the lesions? I have not heard of lesions being caused by migraine.
Thanks for your replies. My husband and I were also surprised by the change in diagnosis, but I have been told that much has changed in the diagnosis of MS in the ten years that I had received the diagnosis. There has also been much more research and recognition of the sometimes severe symptoms caused by MAV. Believe me, my husband and I were both stunned by the change in diagnosis, but as I read the stories on this website I realize that my symptoms are very commonā¦scary but common! I did have a second opinion at Georgetown Hospital and was told that now they know that migraine can cause lesions on the brain. I still have yet to hear from anyone on this board that has them and that causes me some concern to be quite honest but I have been to some of the best neurologists in the US so I will listen and try these new medications and hope for the best.
That information regarding the ability of migraine to cause brain lesions is a really interesting development. I have not heard of it before but it sounds like weāll start to hear more about it. And, absolutely - donāt doubt your diagnosis just because people on this board havenāt (yet) heard about a migraine/brain lesion connection. Youāve been to Top Docs and had more than one opinion. Iād be sticking with that if I were you!
*MRI scans may reveal white matter lesions in young persons with migraine. These can and often are confused with white matter lesions due to multiple sclerosis or white matter lesions that occur in older people (periventricular white matter lesions).
In fact, between 12-47% of patients with migraine have these white matter lesions, compared to 2-14% of controls (Evans and Olesen, 2003; De Benedittis and Lorenzetti, 1995). āMagnetic resonance imaging in migraine and tension-type headache.ā Headache 35(5): 264-8.). When these are seen, it is the author of this reviewās policy to encourage the patient to consider use of migraine prophylactic medications (see following sections), and avoid vasoconstrictor medications such as ātriptansā. According to Evans (2003) as well as Dahlof (2005), the clinical significance of these lesions in migraine is unclear. Possibilities include relationship to migraine, an incidental finding, other medical conditions, or comorbidity of other diseases. Our thought is that, in persons with a moderate to large # of lesions, it is safest to assume that they are caused by migraine, and make a vigorous attempt to treat migraine with prophylactic medications. *
Wow Izzy!!! thank you so much for posting that. Although my Drs at Hopkins and Georgetown are in agreement, I have not seen any scientific published articles till now!! Thank you. Thank you!! Dee
I was just reading in the book āheal your headacheā and it talks about that in Migraine! So that information is out there, Happy for you and welcome!
Hi Dee,
Just wanted to say that my MRI showed some minor abnormalities as well, though they were never described to me as lesions, I think because they were quite small. I was luckyāthe person reading the MRI identified them as being caused by migraine. (Funnily enough, at the time I thought I had Meniereās, and had no idea I had migraineā¦I remember thinking, thatās weird since I donāt get migraine ha ha).
This should put your fears to rest. The evidence is accumulating and this is why the dx has changed for you given your condition has not deteriorated as I suppose they would expect with MS. What a bummer you had that label stuck on you for so long and thought of yourself having this. I really hope the migraine meds turn this around for you finally.
Thanks to all that have replied and for the articles which have been Cited! I am wading through them and am really beginning to believe that migraines are the answer! As with many on this board, this has been a nightmare process and to have had a misdiagnosis of MS for 11 years certainly didnāt help! But now the pieces of the puzzle are coming together and with the help of my dr, proper meds and the wonderful support that I have found here, Iām really hopeful. Thank you: )
One question. ā¦ I have a lot of trouble in loud restaurants. I become instantly lightheaded and cannot focus on the conversation at my own table. Can anyone explain the reason that sound would cause This? If I go outside for a break I feel instantly better. Again, thanks for all the support!
One question. ā¦ I have a lot of trouble in loud restaurants. I become instantly lightheaded and cannot focus on the conversation at my own table. Can anyone explain the reason that sound would cause This? If I go outside for a break I feel instantly better. Again, thanks for all the support!
ā End quote
Hi Dee,
I donāt the answer to āwhyā other than that we have pretty sensitive brains which donāt seem to cope well with over stimulation of any kind. For me it is mosty visual āchaosā which I donāt handle well but when Iām particularly migrainey loud restaurants are pretty awful too.
Hi Dee,
I am 32 and was recently diagnosed with MAV. I have never had migraines or vertigo prior to this My MRI was sent to the Cleavland Clinic and a white lesion was seen on my scan as well. My question is, if you donāt mind me asking, have you had a follow up MRI and if so has there been an increase in lesions?
Thanks!
Dee
So stressful for you going through all the worry of āpossible MSā for so many years! I hope that with the change of diagnosis the new meds will work for you and your future will be much brighter. The docs you have seen are excellent so feel you are in very good hands.
My MRI showed white lesions - my neuro said āmigraineā & nothing to be concerned about. Gt info from Scott & DL!
Re your loud noise problem - something many of us experience! This is an excerpt from Professor Steven Rauch, MD, Harvard Med School on What Causes Vestibular Migraine?
"We now understand that migraine is a disorder of brain chemistry that results in a global disturbance of sensory signal processing - many sensory experiences may be distorted and/or intensified - bright lights, visual flow, loud sounds, strong smells, tactile stimuli and motion, to name a few."
Barb
