He said that my symptoms(sensitivity to light and sound, tremors and twitches on my right side, floaters, fatigue, heart palpitations, coordination problems)are caused by: HEADACHE-FREE MIGRAINES.
Has anyone ever heard of this or been diagnosed with it?
He also added that Lyme Disease rarely has nervous system involvement.
From reading the posts on this board, I beg to differ. But I was too tired to get in a debate with him.
Posted by cantgiveupyet (Member # 8165) on :
yeppers- i was diagnosed with ocular migraines.
My symptoms at the visit where, head pressure in back of my head, sensitivity to light..numb tongue, trouble swallowing, pain around eyes, wrist pain, neck pain.
this neuro ordered a Mri of my neck as he said many women have neck problems and dont know it. MRI came back with severe dis herniation.
Well i chased that diagnosis around for months...a few dr said i had migraines until i went to see a nuerosurgeon and he said you do NOT have migraines you have something systemic.
Almost a year later and my bladder is heavily involved, inflamed really bad......i cant work...my life is basically confined to my house.
Guess that is the migraines.
You have multiple system involvement. I would look at lyme disease...get tested and go from there.
You cant debate with neuor's most think they are God. Posted by islandgirl (Member # 5914) on :
Same story here. Same symtoms as you both listed, same run-around from the neurologists (the 2 heart specialists and the ID doc were also unwilling to think beyond their own speciality, but they were not as arrogant and awful as the neuro doc.)
The big thing I remember, when I could barely crawl up stairs becuase my legs would't lift, or even walk on flat sidewalk beyond 1/2 block....
"OH FOR GOD'S SAKE, JUST GO OUT AND JOG!"
It is the arrogance and condensating tone of disapproval that gets me so damned angry.
Hard sometimes to keep trusting yourself, but it is VERY important. Slow but sure.
Posted by alliebridge (Member # 9103) on :
Thanks so much for your reply.
Sorry to hear of your situation, confined to your house and all. That is just terrible.
I also had bladder involvement(getting up to pee twice each night was the worst of it). It lasted off and on for about four years. Haven't had it since the end of last year, thankfully.
Yes, I have tested positive for lyme(this past February). I brought my test results to the neuro yesterday and had to explain to him what he was looking at.
I didn't expect him to understand lyme disease. I'm just wondering now, whether these symptoms are indeed related to migraine.
I started getting migraines at the same time that I was getting other lyme-related symptoms so it's hard for me to distinguish the two.
I've only had a handful of migraines, and they started six or so years ago. So it was never a major problem.
My last one was about a year and a half ago. So, in a way, I guess they could have progressed to this "no-headache migraine".
But in another sense, ALL of these symptoms, including the migraines could be from lyme disease.
But if it's not lyme related and I just happen to have started getting migraines at the same time, this means the abx for the lyme won't help the neuro symptoms.
From your post though, it seems that your neuro symptoms were from lyme. I'm thinking that mine may be the same.
Posted by 5dana8 (Member # 7935) on :
The neuro ducks I saw keep me sick for years
without a lyme diagnosis.
with: "its all in your head"....
and it's "CFIDS"....
It's stress....
Most of them wouldn't know a case of lyme if it bite them in the @SS
I wouldn't waste another nickle on them if I where dying. Into the alligator pitt with all of them!!!!!!!!!!!!!
Get yourself to a LLMD ASAP. Neuro lyme can cause horrible headaches, but with treatment these will lessen over time.
I hope you can feel better soon and not be discouarged my your ducks ego Posted by alliebridge (Member # 9103) on :
Thanks everyone for your replies.
It's always reassuring to know that there are others in the same boat.
I do have a LLMD appointment, but have to wait until July, just a few more weeks.
Thanks again! Posted by Mathias (Member # 5298) on :
Forget that neurologist's opinion and move on.
Posted by cantgiveupyet (Member # 8165) on :
Babesia can also cause headache....have you been tested for coinfections?
Oh and the same neuor i mentioned above did order a lyme titer......thing is for some unknown reason quest only ran and IGG on me.
The neuro never even picked up on this one :-/ My PCP duck didnt even want to run the test...he thought i was nutz.
Good luck with the LLMD appt if it is migraines they should be able to tell you that too.
Posted by davidx (Member # 8326) on :
My favorite quote from alliebridge's neuro:
"Lyme Disease rarely has nervous system involvement"
It is just amazing how many misconceptions there are regarding lyme disease. Ok, I guess it's not really amazing but rather just plain disappointing.
Posted by Andie333 (Member # 7370) on :
I had most of the symptoms you mentioned. As others said, I was consistently misdiagnosed by specialists for several years who were probably well-intentioned but myopic.
All the symptoms you discussed have improved vastly for me in the year I've been on antibiotic treatment for Lyme.
I decided to deal with the Lyme and any co-infections first. If, after that, I was left with something residual, I could address it later.
Attacking the Lyme seemed like it had to be the first priority. In retrospect, I'm glad I made that decision.
By the way, I haven't been back to any of the specialists since starting Lyme treatment. I couldn't imagine what the point would be.
Hope this helps!
Andie
Posted by timaca (Member # 6911) on :
send your neurologist a very polite letter once your LLMD diagnoses you with lyme. There's info at www.columbia-lyme.org that you can also print out and send to him.
I saw 4 neurologists who didn't have a clue.
Finally saw 2 very good neurologists at Cornell Univ. They are at least aware of lyme. If you need their names, PM me. They are in NYC.
Timaca ps...call the neuro and suggest he watch Discovery Health's program "The Stabbing Sensation." (see another thread)
Posted by Foggy (Member # 1584) on :
Which hospital was the Neuro at. The Boston hospitals are arguably some of the least LL around, which is a joke, given it's an endemic area.
Posted by tjtighe (Member # 4057) on :
We have too little energy to waste on a duck that you have to educate. Go to the Support Groups on the left and find a llmd.
I am sorry you had this bad experience...Grrr!!
Posted by Carol B (Member # 9110) on :
I'm getting a sympathy migraine just reading this thread-it is so painful.
My neuro blamed past history of too much alcohol in my wild and wooly days as reason for brain damage-ataxia, headaches and seizures.
Mind you-I have been SOBER for 30 years-not a drop-and all these problems showed up in the past two years-since initial undertreated lyme diagnoses.
He declared my MRI "basically normal". I had not read the report until I made a trip to the radiologist myself and asked for a copy.
I remember when I had the MRI done I was dressed in light clothing, and the tunnel felt like the Chinook Winds were blowing through it.
I was FREEZING. I kept waiting for the tech to offer me one of those warm hospital blankets-but no-it didn't happen. I remember trying to imagine a hot sunny beach on a tropical island to warm myself.
What I read on my report was "no sign of lesions . Results compromised by artifact motion" DUH- I was SHIVERING throughout the test. JERKS
So angry I can hardly see straight, Carol
Posted by alliebridge (Member # 9103) on :
It was Brigham and Women's hospital.
quote:Originally posted by Foggy: Which hospital was the Neuro at. The Boston hospitals are arguably some of the least LL around, which is a joke, given it's an endemic area.
Posted by JeffM (Member # 8919) on :
I frankly feel that neurologists are a complete waste of time when it comes to Lyme.
I've been dealing with them because of my daughter for YEARS and saw one myself because of sudden tremors, shaking chills, seizure like episodes, etc.
I'd only go to rule out other disorders -- one could have Lyme AND something else of course --
but once you know it's Lyme, the inflammation process can cause a multitude of symptoms
Plus neurologists are know-it-alls who usually don't have very good people skills.
It's amazing and sad to me that the two specialties that should know the most about Lyme -- infectious diseases and neurology -- know the least and are narrow and rigid in their diagnostic procedures. And don't even get me started on psychiatry. LOL.
Posted by alliebridge (Member # 9103) on :
You're exactly right, Jeff.
I only went(my GP's suggestion)in order to rule out something else--like "migraines without the headache" which is what he diagnosed me with. If I do indeed have this, it still could be from Lyme or "migraines without the headache" AND Lyme, of course.
The neurologist actually wasn't too much of a know-it all, as doctors go.
His manner was pretty good, although I don't think he was very thorough--just the usual reflexes, following his finger with my eyes. I thought he would have at least shined a light in my eyes.
Of course, he was clueless about Lyme.
quote:Originally posted by JeffM: I frankly feel that neurologists are a complete waste of time when it comes to Lyme.
I've been dealing with them because of my daughter for YEARS and saw one myself because of sudden tremors, shaking chills, seizure like episodes, etc.
I'd only go to rule out other disorders -- one could have Lyme AND something else of course --
but once you know it's Lyme, the inflammation process can cause a multitude of symptoms
Plus neurologists are know-it-alls who usually don't have very good people skills.
It's amazing and sad to me that the two specialties that should know the most about Lyme -- infectious diseases and neurology -- know the least and are narrow and rigid in their diagnostic procedures. And don't even get me started on psychiatry. LOL.
Posted by Foggy (Member # 1584) on :
quote:Originally posted by alliebridge: It was Brigham and Women's hospital.
quote:Originally posted by Foggy: Which hospital was the Neuro at. The Boston hospitals are arguably some of the least LL around, which is a joke, given it's an endemic area.
Why does that not surprise me. I heard the same crappola and was told Lyme tests are reliable & that it doesn't persist. It's just disgusting!
Posted by dharmacleaning (Member # 2114) on :
Ah, when you said migraine I also thought "babesiosis". If you have night sweats too, it's probably that. It's one of the main symptoms. I actually saw a very nice neurologist in NH. He didn't know a lot about Lyme, but was the first ( of 9) doctors to tell me he thought I'd had Lyme for a long, long, time and the babesiosis was what tipped the bucket. He wanted to do a spinal, but I held off on that as it doesn't seem to be effective. Good luck love dharma
Posted by LostCityAgent (Member # 9050) on :
BS, what an answer-less idiot. There is always a cause and this is BS ! ! !
Posted by usl (Member # 9190) on :
About Boston doctors' knowledge of lyme:
Lahey Hospital ER physician for heart palpitations take EKG is normal so take Tylenol and go to sleep.
Winchester Hospital: You have hiatal hernia, that is why swallowing problems, prescribed omeprazole. (My PCP said there was no hiatal hernia).
Another doctor said it is all in your head, psychiatric problems so take lorazepam.
Now I have changed my PCP, told her about bullseye rash, and she says it is ringworm, as my ELISA is negative. (I did mention I had a tick bite just before the rash).
Posted by tic chick (Member # 9156) on :
I have also seen the neuro docs at Brigham and they also told me that the Elisa is accurate and reliable. They also said maybe MS even though the lesions on MRIs were not typical MS lesions. I am now pursueing a Lyme evaluation.
Posted by Aniek (Member # 5374) on :
I have the good neuro story. I recently saw a neurologist because of uncontrolled movements. He diagnosed it as motor tic disorder and said it was probably caused by Lyme...and even noted that Lyme could cause just about anything.
I'm going through a series of tests, just to make sure there is nothing else. That's really why I saw him. I don't expect him to "cure" the tics, but when my arms started shaking uncontrollably, by LLMD and I both felt I should get a neuro work just to have the full picture.
Posted by bettyg (Member # 6147) on :
I think it was Allie who said she was up twice a night to pee. You'd never make it with my old 10 times a night peeing!
When I went thru my 2 nights of sleep apnea study, each night was 12 times with all those wires attached! uffda.
Neurologist ... our local one is running for democrate to Iowa's legislature. He is the sleep apnea MD. I hope he can beat the previous incumbent; would be good medical-wise!
Posted by lymex5&counting (Member # 7202) on :
I am sorry you are dealing with such a duck.
Please try to get to a llmd asap.
My llmd is a Neurologist so I have a different situation than most.
But when I was put on a Quinolone a few months back. I started having visual disturbances. My neuro wanted to rule out Retinal Detachment and Optic Neuritis (I think) so he sent me to an Opthamologist stat.
Guess what he dx'd me with Ocular Migranes.
He gave me Duradrin for the pain.
It is supposed to relax the vascular constrictions in the brain. (I think) The first time I took it I thought you were going to have to peel me off the ceiling.
It gave me dry mouth, panic attack feeling, anxiety, no patience, etc. I thought this is worse than the headache!
But I finally took it a few more times and I didn't have that feeling anymore. It made my head feel better.
Since it relaxes the blood vessels in the brain.
Does that mean if you have hypoperfusion (which
is decreased blood flow, right?) that it will
make you feel better?
I feel like I can feel my brain constricting all the time. Although my MRI is clear. And I haven't had a SPECT yet.
Just thinking out loud.
Thanks, lyme x 9
Posted by tic chick (Member # 9156) on :
[QUOTE]Originally posted by alliebridge: [QB] It was Brigham and Women's hospital.
Hi Allie,
Thank you for referring me to DR P in Amesbury. I have called and could not get in until September. Have you seen him yet? If so, how did things go and how have you been feeling? I was also being seen at B&W for the neuro related symptoms......they only gave me meds to treat sxs, never getting a diagnosis. Lyme was in the differential diagnosis so I am pursuing that.
Thank you
Posted by minimonkey (Member # 8693) on :
Definitely pursue the Lyme dx -- I have been diagnosed with pretty much all of the above (neck problems, possible MS, fibromyalgia, likely CFS, hypochondria, stress, panic attacks, etc.) -- and guess what?
I have Lyme and Babs! Treatement is taking care of the whole shebang -- and I am finally getting better. But it was MY OWN research that led me to the diagnosis, and then seeking out a specialist -- no thanks to all the ducks I've seen over the years...
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