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RLR please, any suggestions? (Read 6054 times)
angiebaby
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RLR please, any suggestions?
Jul 04th, 2007, 11:09am
 
Hello, i have been to see the neurosurgeon today to get my brain and neck MRI results.  He says that it is not chiari malformation and he does not know what the problem is.  There is nothing getting trapped or pinched and when i asked him about the symptoms i was having he just shrugged his shoulders and said that he did not know.  He is referring me to a neurologist and a physiotherapist.  That will be another good couple of months to wait again.
I have seen an ENT specialist and had a neck xray and seen a cariologist and now the neurosurgeon is at a loss as to what it is.  He thinks that the neurologist might be able to help me.  And he said that there is something going on, even though he doesn't know what, and that the only thing to do now is to have futher tests and check of the tick boxes as to what it is NOT, until they find out what it is.  My symptoms in case you do not remember are:
Extreme dizziness, falling over, walking into walls and doors/door frames and losing balance frequently, the room spinning and the floor coming up at me, having to hold on to things a lot and not being able to walk in a straight line.
My ears shut off and i go dizzy and nearly fell down the stairs at work the other day, ringing in ears and echoing sounds.  Low pulsating sounds and the hearing going on and off, especially when there's a loud noise or the hoover is on!
Pains in head, tingling in face and head.  Lip going numb and feeling as though my right eye lid is drooping down, there is a drop already on my right eye that is quiet noticeable.
Pins and needles in my arms and hands and the feeling that my shoulders and wrists are 'shutting something off' and when i move them there feels like a 'gush' of warm til they 'come back to normal'.
Pain in neck, shoulders and top of back.
And when i first went to see the neurosurgeon and he tested my reflexes he found that i did not have a reflex above my right elbow where i should have one, a weakness in my right arm, (i am right handed) and also a tremor in my left arm.  I did not know about this until he found them.  But i had noticed that i had a loss of grib in my right hand when trying to open a bottle for my son, this scared me.  
So now i am at a loss and feeling very fed up.  But at least now that i have the all clear from the hospital i can now start with some therapy for my PTSD, as the counsellor could not do anything with me until she had my results in case there was a physical problem.  He has no idea what it could be and thinks that a neurologist might be able to find something wrong concerning my muscles.  So, knowing that you are a specialist yourself and what good and sound advice you give to us all on here, i was just wondering if you have any ideas what could be wrong.  I know this would be pure speculation as you cannot examine me properly, etc, but even if you have any vaque ideas i would be very grateful just for the chance of giving me an idea of what it could be to do with and maybe put my mind at rest a little.  Thankyou for taking the time to read this long winded post.  Angiebaby.
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Angiebaby.x
It take a minute to get anxiety and a lifetime to get rid of it!!
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RLR
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Re: RLR please, any suggestions?
Reply #1 - Jul 5th, 2007, 4:22am
 
Okay, I've read your posting and will certainly agree that without formal evaluation, I would be operating in the blind so to speak.

As I recall, your symptoms fit the classic pattern of Meniere's Disease and can vary quite a bit between patients. Meniere’s Disease most frequently affects men and women equally and is often diagnosed between the ages of 30 to 50, although there have been documented cases where the patient was as young as 10. Meniere’s Disease can affect one ear (unilateral) or both (bilateral).

The three major symptoms of Meniere’s Disease are tinnitus (ringing or other noises in the ears), hearing loss and vertigo. Other common symptoms can include imbalance, sometimes slurred or incoherent speech, panic attacks, generalized fear in social situations, nystagmus (which is the twitching of the eyes in a subjective manner), as well as something called Tumarkin Episodes (also known as “drop attacks”-where the person drops to the ground and may lose consciousness), Micropsia or seeing small moving objects that do not actually exist and tingling or twitching or pain in the affected ear(s). Trigeminal neurlagia and 3rd nerve palsy have also seen on some occasions, which would support the ptosis of the right eye, numbness, tingling, etc.  

Cognitive and memory disturbances, commonly known as “brain fog”, affects short-term memory and other facets of cognitive functioning including the ability to form complete sentences while speaking, thinking in a linear fashion and being able to foresee consequences of one’s actions or lack of action. These make performing day-to-day and work requirements a matter of concern to the patient, as they might not be aware of a problem until it has occurred. Many patients with Meniere’s Disease are unable to work due to the severity of their symptoms.

Medication such as diuretics to deplete the amount of fluid in the inner ears and benzodiazapines such as Valium and Klonopin are given to sedate the vestibular nerve. Antivert and Dramamine are often prescribed. There are various surgical options such as Vestibular Nerve Severance and Endolymphatic Sac Decompression with Shunt Placement. These surgeries have varying effects and new options such as injecting antibiotics directly in to the inner ear are now being used, also with varying degrees of success.

As for the weakness in your right arm, visible evidence of mild atrophy of the muscle tissues or other signs might elicit your physician to perform an EMG, which would provide evidence of problems there. I'd be surprised if the test is positive, but it would rule out certain conditions.

Without a direct work-up, I am really unable to provide much else. My opinion would be Meniere's at this point. I think it would be pointless for me to simply throw in a wild guess otherwise and some diagnostic information would be necessary at the very least for me to give opinions about other possibilities. Once you visit with your neurologist, please feel free to discuss the results of any tests and I can offer you more information at that point. Regardless, this does not appear life-threatening in my opinion and if you're concerned about things like tumors, then you can relax a bit. The constellation of symptoms in those cases is a bit different than what you're experiencing. You'll be fine.

Best regards and Good Health  

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Best Regards and Good Health
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saab
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Re: RLR please, any suggestions?
Reply #2 - Jul 5th, 2007, 5:37am
 
Just to say, my sister-in-law has meniere's and has the hearing/dizziness symptoms but is still able to perform a very responsible job, so don't worry too much if this is what it is.
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angiebaby
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Re: RLR please, any suggestions?
Reply #3 - Jul 8th, 2007, 12:26pm
 
Thankyou very much for the replies, just very frustrated that i still don't have a diagnoses yet.
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Angiebaby.x
It take a minute to get anxiety and a lifetime to get rid of it!!
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beadbabe
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Re: RLR please, any suggestions?
Reply #4 - Jul 9th, 2007, 5:33am
 
Hi
Hope you are doing a bit better after the scan results and so on. Any and every symptom also seems to be possible to put down to anxiety. I get so much weird stuff and I have had many tests. Either I have some weird disease they can't identify or I have anxiety - it's almost certainly the latter!

A lady across the road from me has menieres and seems to live a normal life - so if it is that you will have a diagnosis and be able to take some steps. And it's not fatal, so no worries there. Smiley

Take care of yourself
x
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angiebaby
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Re: RLR please, any suggestions?
Reply #5 - Jul 10th, 2007, 10:07am
 
Thanks beadbabe, and i know that a lot of it could be down to 'just anxiety', although there isn't any 'just' about it is there?  I understand that and i am coming to terms with this fact and even when things start i say to myself, oh anxiety again, i am ok.  But of course you don't feel ok.  Been the shop today and came home and cooked tea and the kitchen was just spinning.  Before i was putting this down to my head and neck but of course i cannot do that now because it has been proved that my head and neck are ok.  I was thinking that something was trapping and that has also been proved not to be happening.  So i'm left with nothing as yet.  
The problem that i have got at the moment is the front of my neck.  It is not globus hystericus, it's not on the inside, it's on the outside at the front.  Feels like there is something there all the time, nothing that i can feel with my hands, just feel in my neck.  It's worse when i put my neck down, creating a 'turkey neck' as it were and feels a little bit better when i put my head and neck up, sort of stretching it.  I donot know what this is and it is quite worrying.  Feels swollen and massive and as if everyone can see it, but when i look in the mirror it isn't massive at all, but it can be seen.  Has anyone else had this, i've had it for two weeks now!x
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Angiebaby.x
It take a minute to get anxiety and a lifetime to get rid of it!!
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