[serene_butterfly]

Hi to Everyone at the Dizzy Lounge. Just a quick introduction...

My name is Rhiann and I am 24 from Pontypridd, South Wales here in the UK. I first suffered from dizzy spells from the age of 8 but have gotten considerably worse during the past couple of years. Docs keep putting it down to anxiety, but the dizzy spells started way before I suffered from the anxiety, but they don't seem to listen.

My balance has also become affected and fall over a lot, and have tingling sensations in my legs, either that or they feel heavy, the tinglingness has also started in my left arm especially the fingers, and have noticed subtle shaking when I sometimes pick things up. Have noticed that things like strobe lighting and other similar lighting effects like you find in the theatre, cinema etc can bring the dizzy spells on but have not noticed any other triggers.

Been to the neuroloiust once last year, had an MRI but that was clear but by the looks of the results they was only looking at one specific part of the brain... maybe ruling something out rather than looking at it generally?? Wanted to see me again near the end of 2009 but he left the hosiptal in the August and have not seen anyone since as they have not yet replaced him. So stuck in a quandry with many things left unaswered...


Finally had another appointment come through though... July 23rd... really nervous, hate hospitals and don't really know what to expect or tests they're going to recommend, etc.
Can anyone relate to these symptoms, any ideas what it could be?

[Koala77]

Hello serene_butterfly. We've not spoken before, so welcome to NeuroTalk.

I'm sorry that you're experiencing the symptoms that you are, and that you don't seem to be getting the diagnosis that you obviously need. From the age of 8 until now is a long time without any answers.

Unfortunately I don't have the answers that you seek, but as a person diagnosed with Multiple Sclerosis, I do understand the frustration that can accompany a myriad of unusual symptoms especially when the doctors keep labelling them anxiety related, when you know that they're not.

It's good that you've seen a neurologist and it's good that you've had an MRI, especially as MS is one of the diseases that presents as you've described. I don't want to frighten you, but MS doesn't always show up on an early MRI..... sometimes it takes a number before the first lesions are seen. Have you had a lumbar puncture? That's another test for MS if the doctor's are looking into that, but it's not a test that's done without good reason.

Although there are probably hundreds of conditions that fit your symptoms, the only other things I can think of at the moment are related to your ears and your neck.

A CT scan of your neck might be a good idea.... to rule out pressure on your spinal canal, but if that was the case I'd expect other symptoms as well as dizziness.

Ear problems can cause dizziness. The inner ear controls your balance, but I daresay if you've seen a neuro then your ears have probably been investigated as well.

I'd like to be able to give you a list of possible diagnoses, and a list of tests that would help you, sorry that I couldn't. I do hope somebody else comes along soon and is able to suggest things that I'm unable to think of.

Good luck, and I hope you get the answer soon. Please know that if it did happen to be MS..... I've had it 34 years, and I'd much rather have MS than many other conditions.


Addit : One of our members had similar symptoms recently and she discusses them here in the forums. If you click this link, she explains herself in reply number 3 ...
http://neurotalk.psychcentral.com/thread125610.html

Also, up at the top of each page you'll see a search option. If you type dizziness or something similar, you'll be able to do a search of all other threads and posts here in the past. Maybe that'll bring up someything helpful.

[serene_butterfly]

Originally Posted by Koala77

Hello serene_butterfly. We've not spoken before, so welcome to NeuroTalk.

I'm sorry that you're experiencing the symptoms that you are, and that you don't seem to be getting the diagnosis that you obviously need. From the age of 8 until now is a long time without any answers.

Unfortunately I don't have the answers that you seek, but as a person diagnosed with Multiple Sclerosis, I do understand the frustration that can accompany a myriad of unusual symptoms especially when the doctors keep labelling them anxiety related, when you know that they're not.

It's good that you've seen a neurologist and it's good that you've had an MRI, especially as MS is one of the diseases that presents as you've described. I don't want to frighten you, but MS doesn't always show up on an early MRI..... sometimes it takes a number before the first lesions are seen. Have you had a lumbar puncture? That's another test for MS if the doctor's are looking into that, but it's not a test that's done without good reason.

Although there are probably hundreds of conditions that fit your symptoms, the only other things I can think of at the moment are related to your ears and your neck.

A CT scan of your neck might be a good idea.... to rule out pressure on your spinal canal, but if that was the case I'd expect other symptoms as well as dizziness.

Ear problems can cause dizziness. The inner ear controls your balance, but I daresay if you've seen a neuro then your ears have probably been investigated as well.

I'd like to be able to give you a list of possible diagnoses, and a list of tests that would help you, sorry that I couldn't. I do hope somebody else comes along soon and is able to suggest things that I'm unable to think of.

Good luck, and I hope you get the answer soon. Please know that if it did happen to be MS..... I've had it 34 years, and I'd much rather have MS than many other conditions.


Addit : One of our members had similar symptoms recently and she discusses them here in the forums. If you click this link, she explains herself in reply number 3 ...
http://neurotalk.psychcentral.com/thread125610.html

Also, up at the top of each page you'll see a search option. If you type dizziness or something similar, you'll be able to do a search of all other threads and posts here in the past. Maybe that'll bring up someything helpful.

Thank you very much for your reply, it's great to know that you are not in the same boat, etc in regards to not knowing what is wrong and it does happen quite a lot.

If there is something wrong, personally I will be relieved so that i know what is happening and that it's not in all in my head!

[NeuroNixed Craig]

You do have an interesting med history and dealing with social medicine in the UK does not make your personal situation any easier to deal with short or long term.

Koala provided and excellent response and speaks from good authority based on the experiences and knowledge acquired over the years.

First, may I point out, "WELCOME" to NeuroTalk we are glad you have found us. To my knowledge, none of us are medical doctors. Having pointed this out, in essence you have come here for direction, support, answers to questions; however, visiting an internet forum is not the place to expect a diagnosis. My impression from your post is you understand this and are actually seeking acknowledgment and appreciation with like minded people.

As Koala pointed out the inner ear can cause the imbalance challenges. However, with the other neuro oriented symptoms you listed my first gut impression is MS, within the differential to be explored. True, MRIs can take some time to show lesions after the onset of symptoms. Most importantly a good consistent neurologist is a priority but currently out of your control.

Many neurological diseases and disorders, such as MS, are determined by a "rule out" process involving many different tests taking some time to accomplish. Neuros are always looking for the quick and easy diagnosis with a heavy lesion load on the brain MRI and/or positive lumbar puncture results in the CSF (Central Spinal Fluid). Barring that, the process is very subjective based on the neuro.

At this point you are doing the best thing possible, being proactive in seeking out information and educating yourself. This is a great place to do that by asking questions of those who have been there and done that. As Koala mentioned there are several specific boards you may wish to visit including the MS board. Keep us informed as you move along this journey.

As you can see by the length of this post, there are no simple quick answers. Just understand, you are NOT alone!

[serene_butterfly]

Thank you Craig. hopefully I will have some answers soon - my neurology appointment is on the 23rd of this month.

I don't what it is, but the dizziness started when I was about 8, but symptoms of MS do not start until later in life doesn't it? Ironically, they thought there was something wrong with me when I was first born, apparently I held my legs riged which newborns aren't supposed to do or something, so they done an ultrasound of the brain which didn't show up anything, not sure what that means or if it is relevant?

[lyndarva]

As my doctors tell me, just because you are having multiple symptoms doesn't mean they are all related or part of the same disorder. (yeah right <G>)

I have a rare balance disorder and I also have other disorders similar to what you describe. If they were all diagnosed under one umbrella, it would be MS according to all of my doctors. My neurologist keeps doing MRIs and they don't show lesions so he says he can't or won't diagnose me with it, even if other doctors say I have that. The rare balance disorder was diagnosed by a neuro-otologist that people from all over the world to see. Since I moved I had to find another neuro-otologist that was qualified to see me. Many states etc. only have one or two neuro-otologists and not all of them are up to date on some of these newer conditions.

I understand your frustration.

[serene_butterfly]

Originally Posted by serene_butterfly

Hi to Everyone at the Dizzy Lounge. Just a quick introduction...

My name is Rhiann and I am 24 from Pontypridd, South Wales here in the UK. I first suffered from dizzy spells from the age of 8 but have gotten considerably worse during the past couple of years. Docs keep putting it down to anxiety, but the dizzy spells started way before I suffered from the anxiety, but they don't seem to listen.

My balance has also become affected and fall over a lot, and have tingling sensations in my legs, either that or they feel heavy, the tinglingness has also started in my left arm especially the fingers, and have noticed subtle shaking when I sometimes pick things up. Have noticed that things like strobe lighting and other similar lighting effects like you find in the theatre, cinema etc can bring the dizzy spells on but have not noticed any other triggers.

Been to the neuroloiust once last year, had an MRI but that was clear but by the looks of the results they was only looking at one specific part of the brain... maybe ruling something out rather than looking at it generally?? Wanted to see me again near the end of 2009 but he left the hosiptal in the August and have not seen anyone since as they have not yet replaced him. So stuck in a quandry with many things left unaswered...


Finally had another appointment come through though... July 23rd... really nervous, hate hospitals and don't really know what to expect or tests they're going to recommend, etc.
Can anyone relate to these symptoms, any ideas what it could be?

Hi Everyone

Well, I saw the consultant neurologist, who figured out the problem but unfortunately there is nothing that they can do

Basically, I have scarring on the brainstem, which is something I was born with or something happened during my birth. Probably has been getting worse as my brain was still growing etc but now I have stopped growing the problems will stabilise.