Hi All,

I'm just back from seeing Prof Halmagyi at RPA hospital here in Sydney. This is the first time I've seen him as a patient. So here's what I found out for 240 bucks.

The first thing he did was read the A4 sheet I had written out with my history on it in bullet points. He then quizzed me on the ipod problem and the guitar wondering if it was the sound volume of course. I said no, that it was more likely a multi-tasking issue on the guitar at least; that I could still play but that it made me dizzy even at near zero volume. He didn't say much more on any of that. He then questioned the labyrinthitis diagnosis which I stood by describing it in detail. I had the distinct impression, however, that he was not listening. He said something to the effect that most doctors just say that because they don't know what else it could be. But then I told him to pull up Prof Gibson's report from Oct 2003 who had dignosed labyrinthitis. Halmagyi then believed it.

Next he threw some goggles on me with a little green light inside and flicked my head all over the place. All normal. Then he ran a head impulse test - normal. This was strange because in Feb 05 when I saw him at that lecture he said there was a lag on the right side. Not now which doesn't make much sense as this is not something that gets better. If there is a lag in eye movement it shows damage, end of story. The lag is not restored.

So he said the whole dizzy thing was a convoluted story and hard to peg. In my situ it would be a process of elimination. So he asked me "what sort of brain diseases have YOU thought this could be"? I told him I had thought about MS in one or two fleeting moments. He then said he *could not* rule out MS, that MS could be causing my symptoms! I nearly fell over! But he said it was very unlikely - a 1 in 100 chance! He said we could scan my brain for white spots, find out it was there and I would never be able to get life insurance so what was the point? And even if it was, what difference would it make, that we still have to treat the symptoms. I kept going with this asking how do they treat MS. And he said they fill you up with interferons. No thanks! When I mentioned that upping the dose of an SSRI almost completely wipes out my symptoms he was sort of amazed!

At that point I decided to steer the conversation to something more relevant - like migraine. He said there were lots of migraine issues and variants that could be responsible but didn't seem overly keen on that idea. To make a long story short, he told me to stop the SSRI, stay drug free for one month and then start a tricyclic he prescribed called Prothiaden. If this failed he said we would move onto another migraine med (calcium channle blocker) called Flunarizine. Given the nightmare Adam had on this med, I'm not so sure about that.

I don't feel hugely impressed with the visit. I was expectig more information on MAV etc. It really didn't feel like he "got it". I just hate having this MS issue buzzing around in my head again as a possiblilty. And it's true, if I read the symptoms that come with MS I could say I definitely have some of them. But then don't we all get occasional tremors (early days for me), anxiety/depression episodes, dysequilibrium, unexplained pain syndromes etc?

There was no talk of decompensation nor did he say much about my massive relapse last year when I used a new LCD screen. Hardly a symptom of MS I would think. More likely a migraine trigger or simply decompensation.

Anyhow, I guess I will go on this new med regime and see what happens. I'm sick of being a Cipramil junkie now and, after hearing of hbep's friend having great luck with an anti-migraine med I want to go down this road. No doubt I'm in for many more battles with the dizzy monster yet.

If anyone has any comments on the above I'd be grateful to hear them. I feel surprised and disappointed to be honest given the detail and quality of care hbep and Subs have received in London and Pennsylvania. Maybe I was expecting too much from a guy who sees about 1000 dizzy patients a year.

Best....Scott :cool:

Hi Scott

What can I say? I feel so disappointed for you as I know how excited you have been about seeing this guy.

Seems to me he is just in it for the money as he doesn't seem to have given you any information or assistance to get you better. You are probably more scared now than before you saw him.

I am sure that if you had MS it would have been picked up by now, assuming that you have had MRIs etc?

Sorry you didn't get any answers to your questions, seems to me you were the one that was in control at this meeting not him. A waste of your money and time.

Take care


Mac2

Hey Scott
I honestly can't think of a single post on this board when anyone came out of a meeting with an ENT, Neuro, or any doctor and felt completely relieved and satisfied that all their questions were answered. I think this dizzy crap is a process of elimination to find the source, and as we go along this bumpy road of compensation/decompensation and recovery, new issues pop up (for me the BPPV threw me a complete curve ball, for others it's the appearance of MAV) which only adds to the initial diagnosis of Labs.
Don't let the possiblity of MS start messing with your brain (no pun intended), when anyone, not just dizzy sufferers, read the list of symptoms for MS, they can often relate to some of them at one point in their lives. Your symptoms are so classic of inner ear, I think it prudent to deal with that first.
Seeing this guy may have raised more questions than answers, but at least you are doing something now that may lead you to finding the answer, and getting off the SSRI will only help you in the long run.
Good for you for not getting caught in what happened to me when I saw the ENT and forgot to ask all my questions till I got home! You took charge of your own situation and didn't just let him run the show, he was probably a little taken aback by a patient who was so prepared...perhaps when you go back to see him to report on your progress with the new drugs he will also be better prepared to answer your questions....he is probably still scratching his head wondering "who was that guy?"...
Hope you are feeling okay about it all, as my mom used to say "good things come to those who wait"
Ciao
FC

Scott:


I also feel bad and I am dissapointed as I know you were looking forward to this. As far as I was told 98% of MS diagnosis is straight from the scans. All neurologist use the MRI's and MRA's to diagnose MS so if you got those done I am sure you are ok. My doctor said the use the scans to rule out central causes and then Miograines are one of the only central cause that do not usually show up on a scan but based on proccess of elimination Being from what I learned if the antidepressant has helped you you may have a Migrane Variant as This is one of the medications of choice as is calcium channel blockers which I am on low dosages of both. I am going to try in January to come off the Zoloft but I realize that I may need the low dosage to keep myself stable. Hopefully it will work. Give the calcium channel blocker a shot. Verapamil has helped me. But as my Neurologist said. About 2/3 of all patients can usually start to be stable without medication and the other 3rd always need medication. But if you have this condition differnet things like diet, Air pressure, lighting etc will trigger symptoms .
Keep your head up


Howie

Thats sad Scott.... I feel that noone will ever understand this type of illness... Even the best in the profession. Unless there ever is a diagnostic test to determine exactly what it is, Doctors will be dumbfounded... They can only treat what they know based on a test or precise symptoms... If you fall into a outer lying segment it seems hopeless... I am kind of concerned wiith the fact that he mentioned MS as to say anything is possible... Diagnostically, the MRI should definitvely rule out MS... I believe you can also have an LP to rule it out if you so wish..... Either way, I know you had high hopes for this guy..... Hopefully his new plan of action will do something.

How are you feelng now?

Tummy

Hey Scott Old Buddy,

I'm saddened to read your post as it has hit home for me one too many times.

I remember eating out with my son one afternoon after school as I was having a better day and promised him an icecream sundae if he ate good. Somehow, a conversation was sparked with the waitress regarding my ear problem and she said her mother (who was up there in age) said she came down with MS after an ear infection. Well my heart just stopped and I depressed myself and made myself sick thinking about this and then my husband reminded me that I don't know this lady at all and her story could be exaggerated or things left out of it. Maybe she had MS (undiagnosed) and then had an ear infection and coincidently her MS symptoms came out afterwards or maybe the waitress was nuts and just made the story up after hearing my experience. So I finally left it at that.

When my sister became ill, she was screened for various illnesses including MS and eventually when no tests showed anything, they ruled her illness as ALS (a little harder to diagnose than MS). MS from my knowledge is more clear cut through MRI's and bloodwork. Needless to say, my sister died of a braintumor (NOT ALS) not caught on the scan because the doctor was too dumb to scan her whole head and not just one specific area like he did for MS.

Doctors are too quick to jump to conclusions and say things that they don't take time to clearly think about before saying them. I caught my neurotogist in a few things that bug me to this day. One of the biggest being the tinnitus issue where he swore up and down most people recover from tinnitus even after a year (had lots of patients who did recover) and then a year later I asked the same question assuming he wouldn't have remembered I asked him the first time and he said for most it doesn't go away after a year. I think they just say whatever comes out at the time.

Another story is my father died in 1997. He was a heavy smoker and came down with Pneumonia which ended him up in the hospital. While he was under (on a respirator), the doctors talked my mom into doing a whole physical workup (which put a lot of pressure on her to decide). His heart was very strong by the way. They wanted to include a colonoscopy in the physical. She agreed to it. My father eventually came off the respirator (about a day after the physical), improved greatly in a day and was released from the hospital. One day home he complained of abdominal troubles and bathroom issues. That night he passed away suddenly after using the bathroom. To this day, I can't help thinking they did something during that colonoscopy.

I guess with those experiences and my own and the fact that I ended up like this myself after serious of events provoked by the medical field, I just have a hard time trusting them.

My point in all this is I wouldn't take the MS thing to heart. And anything like ALS, in three years would have progressed so bad or you'd be dead by now.

FC brought up a good point and that is I've never seen anyone post a positive medical visit on this board yet (except maybe Howie, but even he isn't 100% yet). I think the appointment you were so psyched up for has been very disappointing for you (us as well as we were hoping the best for you) and it is dragging you down too.

I'm going to quote my favorite movie again and that is "Take Baby Steps". Give the meds a try and go from there. If you've had an MRI, I'd definitely not give the MS scare a thought again, but rather what you need to do to beat this.

As far as the SSRI goes and it reducing the symptoms that can be an indication of migraine as well as the increase in your symptoms could be a rebound effect of coming off the med (you can take a peak at my post to Tummy regarding this theory). It can take up to a year to get that med out of your system. Also, things that through you off like the PC, Driving long distances, etc.....never saw that as an indicator of MS (when I was researching my sisters case).

Keep your chin up.......Thinking of you......Gloria

Hi Scott

Sounds like he----wants to set the slate---to zero(back)---not such a bad idea----given the complexity of this stuff---which is what he lead in with---and also true...

For a guy with his experience/background---and with all the time that has passed-----where I would start---&----basically what Univ of Penn---did---that way when a conclusion is reached---it is something they/he can defend/standby...

Good place to start is with the MAV idea---it---would seem logical---how effective it is----remains to be seen---but logical---for sure,ie LCD, etc..

Prob will not be a cake walk---thats for sure---but---u will be pulling the string---to get an answer/fix---and with one of the best....

Suspect he will---take ownership---and move out smartly---lets hope so...

As for the MS----interesting---they way that came up---I suspect---just wanted to see---what u were worried---about---so he could put that to bed also---clear the decks---for his---effort----agree with him---extremely unlikely----at this late date

.....(see (web page) Dr/Prof Hain Northwestern Univ article Dizziness and Multiple Sclerosis (MS) Timothy C. Hain, MD.....

..."While many persons with dizziness are very anxious about having MS, practically it is very uncommon to diagnose MS in a person with vertigo or unsteadiness. The reason for this is that MS is an uncommon disease, far less common than inner ear conditions such as BPPV, or common neurological disorders such as migraine.

On the other hand, MS can sometimes be a devastating neurological illness, and treatments are gradually becoming available. Thus, thought is that although MS is uncommon, it is worthwhile to look a bit harder for MS than more benign disorders, or equally devastating ones in which there is no effective treatment (such as PSP)........"....(go here for complete article)

http://www.dizziness-and-balance.com/disorders/central/ms.htm

When do u go back to see him???


:cool:

Hey Scott,

Your post caught my attention. Along with myhead symptoms, I have MANY neurological symptoms that mimic some of the signs and symptoms of MS. For many years, I have thought that this is what I have been dealing with, only it hasn't been "discovered" yet.

My (younger) sister-in-law has had bouts of vertigo on and off, but her physician chalked it up to colds and sinus infections.

Last year she developed some funny "walking on marbles" feeling in both her feet, as well as some other unsettling but painless neurological symptoms.

She went in for an MRI and came away with a very surprising diagnosis of MS. Her neuro at the time told her that if she hadn't had the MRI done with dye (contrast), MS would have been missed as a diagnosis because at the time, the lesions on her brain were very, very small.

This concerned me because I have had a few MRIs over the years, all without the contrast.

My neuro told me however, that because I have had my symptoms for as long as I have, that by this time, it would be apparent if I did have MS.

However, then I think back to actress Terri Garr, who was misdiagnosed for YEARS and had been dealing with MS all along.

I still can't believe sometimes that it's my sister-in-law and not me. Not that I would want MS, but you get my point.

I'm telling you this to let you know that I think everyone dealing with something like our head symptoms cannot help but think and wonder about all the possible causes of it. MS included.

I was told that a spinal tap is a definite way to diagnose MS. That may be something to consider if only to alleviate your worry thoughts.

Thinking of you. xo

Hey all,

Thanks for your replies - really appreciate it.

To be honest I'm not worried about the MS thing any more at all. I just don't believe that and know that my symptoms fit VN/labs followed by a possible migraine problem more than anything else. Furthermore, I know of at least three MS cases and they are clear cut. Full on stuff like numb limbs and inability to perform certain tasks.

Rosalyn Davies (London neuroto) said the following last year: "It is possible to have both VN and migraine - that the initial attack can be VN; migraine may lie dormant prior to VN; with the huge stress on the brain trying to cope, migraine is triggered. She has seen this a lot." Perhaps VN screws up calcium channel activity which precipitates a migraine variant.

From all that I have read and from all that I hear through you guys on this board (3+ years) that makes the most sense to me. I also think I do get hit with decomp from real stresses in my life such as the recent separation with my GF. It's got to the point now where I can clearly see what's going on - there are discrete differences in the way things occur. I guess that's the benefit of dealing with this stuff for a long period. You do start to see the wood for the trees.

Subs - I think you're right in that Halmagyi is trying to clean the slate although I'm not sure I agree with his first choice of meds. I told him I wanted to be off anything that played around with serotonin if possible and yet he wants me to hit a tricyclic. A recent migraine article I saw on Medscape showed a treatment flow diagram for chronic migraine activity - variants included. It was in this order: B-blocker (propranolol) > Ca+ channel blocker (Verapamil) > antidepressant (tricyclic or SSRI) > antiepileptics. I'm thinking I might try and have a crack at Verapamil first. We'll see what my GP has to say about that.

Cheers....Scott :cool:

hi scott am sorry to hear ur appointment was fruitless! i have just got home from a neurotologist app myself i have been suffering with this crap for three years .now today i have had a full range of vestibular tests and anomolys hav been found i also had concerns about MS and have recently paid to have exstensive healh tests inc full MRI SCANS! AND THANK GOD THERE IS NO SIGN OF MS! my doc has also prescribed anti migraine meds so i will give them a go! i was also a bit dissapointed with todays outcome the app cost me the best part of a thousand pounds! i have been doing VRT for about a year now with minimal results! i have also been given cipramil but hvnt taken out of fear u say it helped u alot maybe i should give it a go ? ANYWAY SORRY TO HEATR UR APP DNT GO WELL I KNOW EXACTLY HOW U FEEL! JOHN

I'm much more into the idea of a MAV case rather than some undiagnosed MS...

Both for the evolution of your symptoms(wich if were associated to MS, surely you would have noticed somewhere), and for the fact that it's quite unprobable by nature.

Nevertheless, this MS thought alone sure brings more terror to all of us mid-long term Vestibular sufferers, and even as there are some cases like the one you mentioned, where MS was really underneath it all, but it was hard to discover, I believe that there are much more cases of hard to diagnose(and treat) MAV, which can cause an awful lot od similar symptoms to MS, and could also last forever if left untreated.

So, my vote is on some sort of MAV.

And I'm with you, somehow a lil bit dissapointed, on "the experts take"(Halmagyi in this case), where we all hope that after an appoinment with a neurotologyst, or some other expert, some clean straight answer to our trouble will come along, to help us right away...

But on the possitive side, you're on an expert watch and chances are that with some aid you'll eventually find some clear solutions to this.

Cheers.

Hi John,

Sounds like we're in the same boat - 3 years etc. Can you tell me more about your case - ie, how it began and what sort of symptoms you're putting up with now? It's always good to know if others have a similar thing happening and then finding out what treatments worked. Glad you came out clear on the MS testing. I suspect most of would be clear at this stage of the game especially without overt MS symptoms happening. What anti-migraine meds did your doc prescribe out of interest? I have been on Cipramil now for nearly 3 years (I can hardly believe it!) and it was instrumental in pulling me out of a complete nose-dive in late 2003. Once the nose-dive of anxiety and sporadic depression stopped I quickly compensated to about 95% by May 2004. But looking back I think the SSRI may have also kept migraine activity under control too. I have always had a predisposition to head fog and neck pain but rarely headache. Still the former could still be some sort of migraine thing. Adding VN to the mix just blew it further into the stratosphere and continually causes either decompensation or a migraine associated vertigo. I'm going to the doc this week and push for Verapamil I think.

Hi Star - totally agree re the MS thing. I just cannot believe that there wouldn't be more hardcore symptoms if that were the case. Moreover, I am 99.9% sure that I was hit with a viral VN of some sort. I was really hammered when this struck by a viscious virus at the time. I couldn't walk up a flight of stairs I was so weak. The doc confirmed a temperature at the time too.

How are you doing at the moment?

Best....Scott :cool:

Hi Scott.

Well right now I'm on the rollercoaster again, it's been 2 years last November from my last spinning attack wich seemed like the first, but during this past months I've remembered some stages in my life years ago where, I might got something similar, maybe even a spinning episode, nothing as strong as that on November 2004, and nothing as enduring as this year's circus.

I know, even from the test, that I got my ear injured sometime, and I do believe there is a MAV factor to my condition, sicne I was a teen migraneur, on top of that I'm on a permanetn sinus/cold/allergy tandem wich only let me rest for some weeks a year of it.

I think this combination is what's giving me hell, nevertheless being a chronic suferer on the sinus/cold stuff, never before (even last year after the strong 04 attack) something dizzy related has stayed with me for so long... even at full bronchitis episodes.

Even more so, as I posted here, I felt better (dizzy related) during my last strong throat/bronchial trouble, and as I've mentioned too, I'm on a compensation by force status, trying to get lower it's overall effect(the sizziness efect) on my life by not giving it so much weight to it.

Anyway as the wheather has gone crazy here in Mexico City with record breaking low temperatures(for us), I've been permanently cloughed both in my nose and my ears, and I'd even got some secretion(scarily from my "good" ear), wich the ENT called a "viral episode" wich game me some harmless(knock on wood)pustules in my outer ear, wich caused this, with no effect whatsoever on my ear(fingersr crossed)

So I actually feel really worse with this apparent mild but perennial cloughed condition than when I'm on an acute crisis of it(bronchitis), can't tell you why. And of course I'm terrified thinking that this could get me a new injuty both on my bad ear and worse on my good one...

And I believe because of the weather this have gone worse, and it keeps me on the ropes sometimes, bringing me back to the rollercoaster of symptoms which, depending on how you look at them, are also everlasting, but change in intensity, or are coming and going by the hour, from "I'm OK, I feeel cured", to "Here we go again...please help".

Being my most common symptoms both unbalance, swaying, and visual trouble, some fogginess, wich I can't dig out if it starts before or after I'm feeling sick.

As I can't get rid, or at least control to some decent degree this cold stuff, well, I feel like my still posponed date with the neurotologyst will stay posponed, until I can make some improvement here, because las time my doctor blamed specifically this condition for my lack of compensation, as an obvious offender, leaving MAV out of the equation, so I'm looking forward to see if I can control this stuff, it will let me compenate in full, or if after I get this controlled, I'm still dizzy, and maybe give a shot on te MAV possibility.

I know that you can't really prevent a virus, so I'm just taking lots of vitamin C, but if someone knows a better remedy for this, please let me know, I'm open to all.

Sometimes NSAIDs in combination with loratadine and something for the nose cloughing helps me for some time, but then it all comes back again with it's friend the dizziness...

So far... So even...(Iv'e had my practically 100% days too) that's my status