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Limboland, Vertigo, causes, treatments, testing
I am 27 and have been experiencing Neurological symptoms for a little over three years now. I started seeing a Neurologist three years ago, actually today, and he has been NO GOOD. MATTER OF FACT JUST A YEAR AGO HE STARTED TREATING THE MIGRAINES HE KNEW I HAD, FROM DAY ONE. My first symptoms were numbness and tingling in my extremities that appeared in my left leg, but slowly spread to the rest of my body. I found out about a year later from my Rheumatologist that it was actually Neuropathy, Restless Leg Syndrome as well as Myoclonus all of which are considered Neurological.
stiffness, major fatigue, depression, major headaches, spasticity, spasms, myoclonus, restless leg, tingling in head and extremities, vibration sensations, buzzing sensations when moving head from time to time, anxiety, major cognitive dysfunction, sleeping dysfunctions, inability to feel and recognize touches unless they are visual, muscle weakness – especially in extremities, extra tension in arms and legs with usage, chronic indigestion, walking (I have a gait), constant state of tiredness – inability to complete most tasks – moving or lifting items, exercising, walking, carrying grocery, brushing hair, etc
To make the situation worse on October 28th I woke up and the room was spinning and has been since. As soon as my Neurologist's office opened I called and informed them of the fact that I was unable to walk with out running into items or falling completely down. The nurse told me to lie down immediately and to do nothing until she called back. When she called back, she told me to either go straight to the ER or come there. I was told that I was suffering from Vertigo. Unfortunately he has done no testing, just continued to take me off of medication the last few months, which has not helped.
My Rheumatologist last month looked in my ear and noticed that my eardrum was swollen remarkably on the right side so decided to send me to my ENT. He also decided before the appointment to prescribe two weeks of high dose prednisone 4 5mg tablets in the am, and 4 at night as well as two 600 mg antibiotics daily for two weeks. This helped the eardrum go down as well as the apparent ear infection I had at the time. The ENT said that it could have made the Vertigo worse, but was not the main cause, and in turn sent me for an MRI with and w/o contrast and well as Vestibular PT. I had already done the Vestibular PT eval just 6 weeks in advance.
This time the results were much worse she said, she didn't give me the results from the first time. This time though when she scored me standing still and doing a few different exercises I scored only 13 out of 24. When she scored me for gait it was 8 out of 24, so both are pretty poor. She said that she hasn't seen it get that bad that quickly. Now I am facing life using a walker, my Vestibular Therapist ordered a walker this past Friday, and is hoping to keep it at just a walker.
We are unsure as to what is causing the Vertigo, I had several MRIs before years ago searching for MS, as well as a LP, a Evoked Potential and all came back normal. This MRI came back normal as well. Everyone seems to think the cause of the Vertigo still is Neurological, just not sure why, I am firing my current Neurologist though. But cannot get into another one for a few months.
Any suggestions?
stiffness, major fatigue, depression, major headaches, spasticity, spasms, myoclonus, restless leg, tingling in head and extremities, vibration sensations, buzzing sensations when moving head from time to time, anxiety, major cognitive dysfunction, sleeping dysfunctions, inability to feel and recognize touches unless they are visual, muscle weakness – especially in extremities, extra tension in arms and legs with usage, chronic indigestion, walking (I have a gait), constant state of tiredness – inability to complete most tasks – moving or lifting items, exercising, walking, carrying grocery, brushing hair, etc
To make the situation worse on October 28th I woke up and the room was spinning and has been since. As soon as my Neurologist's office opened I called and informed them of the fact that I was unable to walk with out running into items or falling completely down. The nurse told me to lie down immediately and to do nothing until she called back. When she called back, she told me to either go straight to the ER or come there. I was told that I was suffering from Vertigo. Unfortunately he has done no testing, just continued to take me off of medication the last few months, which has not helped.
My Rheumatologist last month looked in my ear and noticed that my eardrum was swollen remarkably on the right side so decided to send me to my ENT. He also decided before the appointment to prescribe two weeks of high dose prednisone 4 5mg tablets in the am, and 4 at night as well as two 600 mg antibiotics daily for two weeks. This helped the eardrum go down as well as the apparent ear infection I had at the time. The ENT said that it could have made the Vertigo worse, but was not the main cause, and in turn sent me for an MRI with and w/o contrast and well as Vestibular PT. I had already done the Vestibular PT eval just 6 weeks in advance.
This time the results were much worse she said, she didn't give me the results from the first time. This time though when she scored me standing still and doing a few different exercises I scored only 13 out of 24. When she scored me for gait it was 8 out of 24, so both are pretty poor. She said that she hasn't seen it get that bad that quickly. Now I am facing life using a walker, my Vestibular Therapist ordered a walker this past Friday, and is hoping to keep it at just a walker.
We are unsure as to what is causing the Vertigo, I had several MRIs before years ago searching for MS, as well as a LP, a Evoked Potential and all came back normal. This MRI came back normal as well. Everyone seems to think the cause of the Vertigo still is Neurological, just not sure why, I am firing my current Neurologist though. But cannot get into another one for a few months.
Any suggestions?
I do have Lyme Disease, I was actually diagnosed with it back in January of 2007 and given a small dosage of antibiotics. We aren't really sure that they did anything to irradicate it though. I see that it can cause Meningitis and Encephalitis, I am certainly hoping that we are one step closer to finding out the root cause of all my problems. But I see that there are no treatments for either of these, which scare me. I have redone the ENG, and it shows that since I had it done in November that I have less usage of my right ear. So there is something affecting the right ear and its nerve, just aren't quite sure, what. My PCPs first thoughts were of course the two conditions I mentioned earlier, and when I saw that they can indeed be caused by Lyme it has me concerned.
My new Neurologist, the one that I was scheduled to see, until I could see the other, was really surprised to see how bad the Vertigo was. And to see how poorly it was treated. He was really blunt, and was really blunt when he called the other Neuro a donkey (not the actual name he used). He stated that if the Vertigo started in October then the MRIs and all of the other testing should have started in November. He was also surprised at the fact that I was unable to stand even 5 seconds without falling to one side or backwards by myself. He also started checking for Nystagmus, and I was surprised at how long he would stare at my eyes before he would actually tell me say anything. I am wondering if he saw anything strange, but he also stated that he wouldn't be upset if I decided to go elsewhere in the end, if I find that after treatment with him I am still unsatisfied. He was really nice and has decided to redo the ENG, do a Lumbar Puncture as well as a Lyme Titre and a few other things. He is so concerned with the Vertigo, its causes and the severity of it, he suggested that I keep my other appointment with my Neuro in Savannah (the one that I couldn't see until next month) for a consult. This has me really concerned as to what could be causing it, and how severe it could get. He has suggested that I limit my driving and that I walk only with my walker. What a bummer. Any ideas?
It is so bad that one foot goes in front of the other when walking, I wonder what is causing this.
Hi and welcome.
Well my daughter is 39 she suddenly had an alarming attach of acute vertigo whilst she was at work about 3 years ago. Over the weeks they got worse and she would literally drop to the floor they were so bad. It happened alarmingly one day when she was crossing the road thankfully she wasnt hurt.
Anyway many tests later, MRI, LP, tilt table test, blood tests she was diagnosed with M.E.
EVEN though there was stuff on her MRI and LP.
The neurolgoist sent her to the M.E. clinic in our area who are experts. She filled in loads of forms about how she was etc. Anyway they said they didnt think she had M.E. but more likely MS.
So off we went on the roundabout you know, round and round lol. Anyway it was fixed on M.E.
She does have the symptoms and if she rests well she does recover to a certain extent.
Prior to her first attack she stayed with me as she had pneumonia. They do say that M.E. can come with a viral attack.
Did anything happen to you prior to your first symptoms?
The problem with your symptoms and mine and many others on this group is they can belong to so many illnesses.
I certainly would have sacked your neurologist. Oh did you know by the way that M.E. is a neurological disorder? This is a brilliant web site about it:
http://www.ahummingbirdsguide.com/
I am in no way saying you have M.E. no sir I am not, BUT it is worth reading.
You have to go for a positional vertigo test to establish what is causing it. My daughter was put on serck and is now much better she seems to have out grown the attacks and only gets them now when she has really over done stuff.
Her illness is under control for now thank goodness but does flare when she overdoes stuff.
She suffers from cold extremities and raynaurds too.
Although we have similar symptoms she cant get up in the morning and sleeps badly at night, where I can sleep early and get up early fairly refreshed even if I have had a bad night in pain. My fatique starts about 3pm, hers when she is flaring is constant.
I love going out walking when i can and this has no effect on my fatigue whereas with hers it knocks her for six.
Something is obviously causing all this. I just wonder why despairingly it takes so young to diagnose people.
Sorry i havent been much help. But you do need to sort out your neurologist and you do need the vertigo test. Hugs mariax
Well my daughter is 39 she suddenly had an alarming attach of acute vertigo whilst she was at work about 3 years ago. Over the weeks they got worse and she would literally drop to the floor they were so bad. It happened alarmingly one day when she was crossing the road thankfully she wasnt hurt.
Anyway many tests later, MRI, LP, tilt table test, blood tests she was diagnosed with M.E.
EVEN though there was stuff on her MRI and LP.
The neurolgoist sent her to the M.E. clinic in our area who are experts. She filled in loads of forms about how she was etc. Anyway they said they didnt think she had M.E. but more likely MS.
So off we went on the roundabout you know, round and round lol. Anyway it was fixed on M.E.
She does have the symptoms and if she rests well she does recover to a certain extent.
Prior to her first attack she stayed with me as she had pneumonia. They do say that M.E. can come with a viral attack.
Did anything happen to you prior to your first symptoms?
The problem with your symptoms and mine and many others on this group is they can belong to so many illnesses.
I certainly would have sacked your neurologist. Oh did you know by the way that M.E. is a neurological disorder? This is a brilliant web site about it:
http://www.ahummingbirdsguide.com/
I am in no way saying you have M.E. no sir I am not, BUT it is worth reading.
You have to go for a positional vertigo test to establish what is causing it. My daughter was put on serck and is now much better she seems to have out grown the attacks and only gets them now when she has really over done stuff.
Her illness is under control for now thank goodness but does flare when she overdoes stuff.
She suffers from cold extremities and raynaurds too.
Although we have similar symptoms she cant get up in the morning and sleeps badly at night, where I can sleep early and get up early fairly refreshed even if I have had a bad night in pain. My fatique starts about 3pm, hers when she is flaring is constant.
I love going out walking when i can and this has no effect on my fatigue whereas with hers it knocks her for six.
Something is obviously causing all this. I just wonder why despairingly it takes so young to diagnose people.
Sorry i havent been much help. But you do need to sort out your neurologist and you do need the vertigo test. Hugs mariax
Hello,
I sent you a private message. You and I have been going through the same type things. Its been a while since I have seen you and I am sorry that you are having some issues. Its been 3 years for you and going on 2 for me, still with no answers. Know that you are not alone and I will keep you in my thoughts and prayers. I am not on Medhelp much because sometimes, it just gets to be too overwhelming since I still have no answers. It may be a good idea to take the trip to Emory. I did find a physician at the MS Center of Atlanta, who was pretty good, even though I still didn't get any answers. Hang in there.
I sent you a private message. You and I have been going through the same type things. Its been a while since I have seen you and I am sorry that you are having some issues. Its been 3 years for you and going on 2 for me, still with no answers. Know that you are not alone and I will keep you in my thoughts and prayers. I am not on Medhelp much because sometimes, it just gets to be too overwhelming since I still have no answers. It may be a good idea to take the trip to Emory. I did find a physician at the MS Center of Atlanta, who was pretty good, even though I still didn't get any answers. Hang in there.
I have been seeing an ENT, and it isnt anything relating to the ear. I have been having major problems thinking clearly as well, so hopefully everything is spelled correctly and makes sense.
Hi There,
You have run the gauntlet havent you....Poor Thing..
Has anyone mentioned Meniere's Disease? It's major symptom is vertigo...My grandfather had a pretty nasty case of it.Theres alot to it so please look it up.
Take Care, Theresa
You have run the gauntlet havent you....Poor Thing..
Has anyone mentioned Meniere's Disease? It's major symptom is vertigo...My grandfather had a pretty nasty case of it.Theres alot to it so please look it up.
Take Care, Theresa
Yes he has ran all of those on me, just in January, and stated they all came back normal. I live about 4 and a half hours away from Emory, and was told that was definetly ideal, either there or Duke in North Carolina a few years ago before the symptoms got bad. I just cannot see well enough to drive there, and even when I could, I was too scared to drive there. I have been scheduled there, but never made it, something would always come up..
Thanks so much binx
Thanks so much binx
oh my goodness--you have certainly been there and back, and i am so terribly sorry. welcome just the same.
i don't know if i have many other suggestions for you other than reinforcing your decision to fire your current neurologist. everyone here is going to think i sound like a broken record, but is there a university medical center anywhere close to you? i see you are in georgia--are you anywhere near emory university in atlanta? i would try to find a neuro at emory if it is at all within your power to get there.
has your rheumatologist run autoimmune disease blood work on you? ana, sed rate, etc.?
you will get a lot of good feedback and support here. we are always sad to learn of another person who is dealing with the terrors of limboland, but glad you found us.
best wishes,
binx
i don't know if i have many other suggestions for you other than reinforcing your decision to fire your current neurologist. everyone here is going to think i sound like a broken record, but is there a university medical center anywhere close to you? i see you are in georgia--are you anywhere near emory university in atlanta? i would try to find a neuro at emory if it is at all within your power to get there.
has your rheumatologist run autoimmune disease blood work on you? ana, sed rate, etc.?
you will get a lot of good feedback and support here. we are always sad to learn of another person who is dealing with the terrors of limboland, but glad you found us.
best wishes,
binx
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