Getting a diagnosis

[Marlana]

My neurologist appointment was today. I originally scheduled to see this doctor for migraines, about six weeks ago. At the time I set up that appointment the OT symptoms started really increasing, though I think I've had it for about 15 years, not diagnosed yet. In the past couple of weeks the OT symptoms have settled a bit and even my migraines have been less frequent. Amazing how just having an appointment makes things go away just so I can't show them off to the doctor.
I gathered the definition of OT from this site, summarized my questions, and everything to do with OT, and brought in my migraine info as well to meet my new doctor. He was friendly, but I got the sense pretty quickly that he wasn't going to pay much real attention to me. I'm legally blind, so as soon as docs see my white cane, they want to slide all possible symptoms under the "blind" rug. He was especially determined to do that with the OT. I gave him my description of OT, and he glanced at it and promptly said, "I don't see how I could ever sort out the symptoms of this with the equilibrium issues you must have from your vision issues." I tried to tell him, how I certainly can tell the difference, a tremor has nothing to do with my eyes. He just ignored me.
I went on through the exam, of course all of it was with me sitting, I passed everything with flying colors and he stayed on the migraine topic like glue. Finally as he was trying to wind down the interview I said, "so, what about these tremors?" He said, "What tremors, I don't see anything." I said, of course not, I'm sitting, I'd like to stand up and show you how it works. He tried to laugh it off, and I just kept standing up anyway. I tried to show him how exaggerated the issue is when my feet are together, you won't guess what he had the nerve to say. "Well, then don't stand that way." I was quick, so I put my feet out a little apart and said, "no, watch", I quickly started to wobble and I grabbed the table and my arm started to tremor and I could see it in his face and hear in his tone of voice that he saw that tremor and he didn't know what to do about it. I think he couldn't find a way to say he didn't know what to do. So, I finally sat down again, and I said, "Look, would you at least prescribe a cane with a seat on it or a walker with a seat on it, I just need the seat." He said "No, I won't prescribe a seat with a cane on it, I can just see you now putting that down on uneven ground and falling." I was ticked, but I said, ok, then a walker?" He said, well I could do that, but let's send you to Physical Therapy, they can teach you some tricks on keeping your balance, then they can prescribe a walker with a seat.
So, now I'm going to physical therapy. Well at least they might can help me with a tweaked hip I've had for awhile.

My question to this forum is this: "What IS The point to fighting to get an OT diagnosis, if there's nothing to do about it anyway except to try meds, and learn to cope with it? If I knew there was something that could make a difference then I'd fight for a diagnosis a bit harder. At this point, I feel like I'm just going to have to cope with it. He's the third neurologist that pretty much thinks I'm over reacting to the tremors and balance issues, that since I'm blind, what else can I expect?. grrrrrrrrrr

Sorry, I really don't mean to be a downer, I think what I need is just a little hug from you guys, even as I type this I feel tears stinging my eyes. I'm not crazy, and people around me have seen these tremors and the desparate search for walls to lean on and chairs to sit on. I know I'm not making this up, I'm just baffled that some doctors would rather blame the patient for something they are too afraid to admit they may not know about.

So, thank you all for being here, providing a place to write out these frustrations. I know I'm ok, I know I'm not just making up these symptoms, and I know I deserve to be treated with respect. I deserve to be heard with an open mind. Ok, now, I'm on my way to getting on with my life even though three doctors so far don't understand my symptoms as worth their time and energy to understand. I AM worth it. (Big survivor smile)

Marlana

[Betty]

Hello Marlana,

First....here is a BIG ((((HUG)))) for you! When I read your post, it broke my heart.

You had such an horrific experience with the neurologist you saw; he has about as much compassion for patients as a 'stump'! He obviously has never seen nor has he heard of OT; and didn't seem interested in learning from you; which would have been a golden opportunity for him.

You KNOW what you are feeling; you KNOW you have tremors, and you KNOW you have balance problems. OT does affect your balance and for him to say it is because you are blind is unconscionable.

You wrote: "I gave him my description of OT, and he glanced at it and promptly said, "I don't see how I could ever sort out the symptoms of this with the equilibrium issues you must have from your vision issues." I tried to tell him, how I certainly can tell the difference, a tremor has nothing to do with my eyes. He just ignored me."

You are so right! I have pretty severe vertigo, but I KNOW the difference between my balance issues with OT and those dealing with vertigo ~ they are totally different. It just means we must learn different coping skills than most.

Regarding the exam you had, if you were sitting....of course he wouldn't see any tremors, one must be standing in order for the tremors to start. When you asked about your tremors and he 'tried to laugh it off' and said he didn't see anything, even though you were standing and were having difficulties, his replies to you were so unprofessional and I am so very sorry you had to experience that.

It is difficult enough to try to get through each day without having a doctor tell you nothing is wrong with you. You know differently.

I don't understand why he wouldn't prescribe a cane/seat or walker for you. So...you are now going to Physical Therapy; I hope they will be able to help you in some way, at least with your hip.

You questioned: "What IS The point to fighting to get an OT diagnosis, if there's nothing to do about it anyway except to try meds, and learn to cope with it? If I knew there was something that could make a difference then I'd fight for a diagnosis a bit harder. At this point, I feel like I'm just going to have to cope with it. He's the third neurologist that pretty much thinks I'm over reacting to the tremors and balance issues, that since I'm blind, what else can I expect?"

I understand how frustrated you must be at this point; but don't give up! You said you had seen three neurologist ~ I saw eight (8) before I finally found someone who knew about OT and did the proper tests on me. It can be a long process, and yes, you are right, there is little they can do for us except try different medications to help with our tremors.

I have been through a 'laundry list' of drugs, but I am very sensitive to medications and was unable to take the ones which seem to be most helpful. I am taking Klonopin. It doesn't stop my tremors, but does help take the 'edge' off just a bit.

Your last paragraph was:

"So, thank you all for being here, providing a place to write out these frustrations. I know I'm ok, I know I'm not just making up these symptoms, and I know I deserve to be treated with respect. I deserve to be heard with an open mind. Ok, now, I'm on my way to getting on with my life even though three doctors so far don't understand my symptoms as worth their time and energy to understand. I AM worth it. (Big survivor smile)"

To that I can say....YES! You do deserve to be treated with respect and be heard with an open mind; and you most certainly ARE worth it.

Many of us have had unpleasant experiences; but I think you 'take the cake' at this point.

DON'T GIVE UP....KEEP LOOKING FOR A GOOD NEUROLOGIST ~ you DO deserve it.

Betty

[jolarson]

Just to let you know that you are not alone. We all have similar stories and frustrations. I, too went to 8 doctors before I was diagnosed at UCLA but they simply do not have any answers to this disease. I just received my monthly notice from NORD that Primary Orthostatic Tremor is on the list, deadline October 14 for research grants. Hooray, perhaps we will eventually find some answers to this disease that most doctors know nothing about and just make us feel like we are silly which unfortunately is what happened to you. I am sorry you were dismissed by a doctor that had no compassion and there is no excuse for such behavior. You have friends here that all understand, care and have respect for each other. Keep us all updated...........

[Marlana]

Thank you Betty and Jo, and others who, I'm sure are supporting me in thought. I do have an update!! That doctor I wrote about did refer me to a physical therapist, Emmy. I went to her yesterday and she was great! She has been a PT since the mid 1980s and has never heard of OT, but I handed her the description from this site. She did read it and at least entered my "subjective diagnosis" into the records. She listened carefully and I told her, that I don't care if she agrees or not, but I need help, I need to be heard and I need to get a walker with a seat or a cane with a seat on it. I would like it to be prescribed so my insurance will pay for it.
Her initial response to my request for a walker was, "You don't need a walker, we will be working on teaching you better balance and re-training your brain. Wouldn't you like to have your balance back? or maybe you wouldn't?" I quickly saw that she hadn't grasped my issues or she wouldn't be saying that, but I also felt like she was open and was still caught in her "typical lines as a PT" So, I said, yes, with an eager smile. I would love to have my balance back (I've never had great balance, but I was truly eager to do the work to get whatever I could to improve my life with or without a walker. So, then we started the tests to assess my balance.
The first few things were simple and without incident, sitting and rotating my head check for neck range. A little cracking in my neck but not much else. Then she had me sit, knees on elbows and turn my head to the left as I looked up without moving my body. Wow! I had instant adrenalin! I almost passed out, the whole room went almost black, I started crying, sobbing, and hyperventilating. She was scared. She kept trying to get me to talk, I tried, and did get some words out. I finally got myself back together and she said that she was not going to do the actual test, since I had such a dramatic response to the pre test. She thought there was some artery in the back of my neck that may be causing the adrenalin to flow like crazy, I think she may have ruled that out later on in the exam. She said as a therapist, she needed to be VERY careful with me.
Then we tested the other side the same way and the same thing happened, to a slightly lesser degree. We did several more tests with very little reaction and she kept saying, "looks vestibular" So I think that's one part that is sticking, but we haven't even stood up yet!! (grin)
So, now we stand up and the tremors start, with all that adrenalin, I was shaking like Santa's belly on Christmas eve. Then she asked me to stand with my feet together and my arms across my chest for 30 seconds. Almost immediately the instant tears, hyperventilating, fight to stay upright. She talked me through the 30 seconds and I couldn't tell who was working harder her or me. So on the assessment went, I had a predictable panic/anxiety response 4 more times during that hour.
She then worked quite awhile to see if she could tell the difference between my eyes wiggling as part of what I was born with that caused my blindness, congenital cataracts, and the eyes wiggling because of being dizzy. I think she may have actually been able to see some differences, we don't know for sure yet. Then we did a walk without support and she said I looked like a tipsy sailor, when I walked with my head turned in either direction the sailor looked like he'd been drinking all night!
As the hour came to a close she said, "I think you need a walker with a seat on it." I had not tried the walker yet, I just know I needed the seat, so I was ready to see if that would work. She brought it out and of course the shakes were pretty bad by then. I reached out and touched the walker handles and the shakes calmed down almost as good as they do when I sit. I was amazed and I felt like I was in heaven after shaking so much. To sit was like a cold drink of water in the desert.
I then asked if she would also recommend a cane with a seat on it. She looked at me like I had three heads. Remember, this is the woman who wanted to help me learn to have better balance and doubted that she would be recommending a walker to me, less than an hour ago. So, she looks at me and says, "No way, you are nowhere near stable enough to consider a cane that becomes a seat. You NEED a walker, when you need to sit, you need to sit right now!"
I just agreed with her, and smiled, inside I was some strange mix of exhilarated, shocked, validated and grateful. Finally someone could reproduce at least some of the symptoms in a way that leaves no doubt that it's not just me being blind or hysterical over nothing.
I have 8 appointments set up with her starting in about two weeks. My hope is to end up with her recommendations for an EMG and maybe other tests. With that strange panic/anxiety response I'm thinking I may be able to get on klonipin or some of the other drugs to try even if I never get the OT diagnosis confirmed. I still know that's right. I believe that I have at least two things going on, I think there maybe another issue or two involvled, but I'm happy to be working on the vestibular issue and doing what I can about that for now.
So, today I am emotionally feeling better. I've cried, I've told my boyfriend, who was with me and is one of my main support people, my lady's group, who held me and let me tell the story and helped me get mad at that doctor who didn't listen. I've talked to my mom and my brother and you all. So, I'm processing well, and I'm ready to face this new chapter. I'm really looking forward to getting my new walker soon.
Gloria, thank you especially for creating this site, and for your definition of OT I think it helps to have something to hand to the doctors. (hugs)

Marlana

[Betty]

Hello again, Marlana,

I was so very pleased to read this second, very informative update regarding your appointment with Emmy. I, too, have been to PT's; but never one who was as good as what you described with Emmy. At last she is interested in listening and trying to help you ~ and ~ you will be getting a walker with a seat!

Regarding the test done which caused you to almost pass out; you said you had an instant adrenalin rush. I have ALWAYS felt the adrenal glands are somehow involved in OT. I have questioned doctors about this, and have described it as the 'fright/flight' syndrome. My adrenalin seems to be rushing through my body all the time. I have also described it as feeling like a VCR in fast forward ~ not a good feeling. However, I have never experienced the terrible reaction you had. I am so sorry that happened to you.

You wrote:

"So, now we stand up and the tremors start, with all that adrenalin, I was shaking like Santa's belly on Christmas eve. Then she asked me to stand with my feet together and my arms across my chest for 30 seconds. Almost immediately the instant tears, hyperventilating, fight to stay upright. She talked me through the 30 seconds and I couldn't tell who was working harder her or me."

At least you continue to keep your sense of humor ~ that is very important. I have had the same test; trying to stand with my feet together and arms across my chest. I couldn't do that. The minute I put my feet together, I was tilting back and forth, trying to keep my balance, so placed my feet apart ~ about shoulder width. That helped, but still was shaking like a leaf.

I have the same thing you described as your 'eyes wiggling'; which is due to my vertigo. There is a name for that, nystagmus (Pathological nystagmus generally causes a degree of vision impairment, although the severity of such impairment varies widely. Also, many blind people have nystagmus, which is one reason that some wear dark glasses ~ from Wikipedia); that is what happens when I am 'dizzy'; the eyes quickly go back and forth until the dizziness goes away. That happens to me when I have a bad bout with vertigo. It has nothing to do with my OT.

I am sure your PT could see the difference; you might ask her the next time you see her. Regarding the walking like a tipsy sailor; I can also relate to that. There are times when I bounce off the walls when my vertigo is really bad. You might want to see an ENT to check to see if you have vertigo as well.

I have been told by at least three neurologist I indeed have OT, but I also have something else going on and they don't know what. I have been to the Mayo Clinic in Jacksonville, FL and the National Institute of Health at Bethesda, MD, just to name a couple.

I understand the helpfulness of a walker; I, too, have one and it makes me feel almost normal. When I walk, my gait is like it was 15 years ago. I had forgotten what it felt like to be able to walk as a normal person.

You wrote:

"You NEED a walker, when you need to sit, you need to sit right now!"
I just agreed with her, and smiled, inside I was some strange mix of exhilarated, shocked, validated and grateful. Finally someone could reproduce at least some of the symptoms in a way that leaves no doubt that it's not just me being blind or hysterical over nothing."

I was so pleased to read this. I do hope you are able to have an EMG done as well as other testing for OT. There IS someone out there who can give you a definitive diagnosis; it may take a little time, but well worth it.

You wrote:

"So, today I am emotionally feeling better."

That is wonderful; it is so helpful when you have such a good support system as you seem to have; and you have everyone on this site as well.

You mentioned Gloria and this site; I think we all feel as you ~ we can never thank her enough for this site; and her son who put it up and keeps things running so smoothly.

Do keep us updated and keep a positive attitude ~ that is also important ~ and I think you are well on your way now.

Betty

[Marlana]

UPDATE: Today I saw a new neurologist, Oct. 25, 2011. Dr. Jullianna Lockman, she is exactly what I have been hoping for in a doctor. I gave her a chart of my symptoms as of a year ago, when I was doing WAY better, then six months ago on one Beta Blocker and then now on Propanelol, which has helped more, but now I'm dizzier than ever. She had no problem giving me the OT diagnosis, and even distinguished it from essential Tremor.
I couldn't even demonstrate the tremor for her if she had needed to see it because the Propanalol has helped a lot. Anyway, she is swiching my meds to Neurontin, I'll start a weaning and switching for the next three weeks. Once I get all switched I'll be on 300 mg 3 x a day. She says that med is also good for Migraines.
I feel so much better now, at least I have a doctor I feel comfortable with and who is listening to what I'm saying without trying to prove their brilliance to me. I am encouraged that at least I'm on the road to trying the medications, and I'm not having to prove anything to anyone now.
And to all of you here, just knowing you guys are here, and so willing to share your experiences, have given me so much support. Thank you, beyond words.

Marlana

[Betty]

Hi Marlana,

So good to get your latest update! It does sound as though you have found a doctor who seems interested in 'listenng' to you and trying to help.

From what I have read on this site, Neurontin seems to be the best medication and helps most people. I hope you find the same results and it is helpful to you.

I think that is one of the reasons Gloria started this site, to share experiences and give support to others. You have lots of friends here.

Betty

[Marlana]

Thanks Betty, for your reply and support. I just took my first dose of the Neurontin, and the most interesting thing I noticed with just that one dose was how quiet it seemed to be inside my head. I don't really notice my brain being noisy, but when I sit, I feel that same, quiet feeling, relief maybe. Anyone relate to what I'm trying to describe?
Marlana

[Betty]

Hi Marlana,

I am very sensitive to most medications and am unable to tolerate Neurontin. I am so happy you have started it and it seems to give you a 'quiet feeling' or relief as you wrote.

Perhaps this will also help your migraines; I know how difficult they can be. I used to have them, but haven't had one in many years.

Please keep us posted on how things go; I do hope you will find great success with Neurontin.

Betty

[Marlana]

Hello Everyone,
Just a little update. I've been decreasing my Propranalol (beta blockers) and increasing my Neurontin for a week now. I'm taking the Neurontin for both migraines and the tremors. I inadavertantly skipped a dose of the Propanelol during the first day I was also decreasing it and I think I triggered an awful "Ice Pick" migraine I just couldn't make go away with all my usual tricks. Finally got it under control after the second day.
Since then I'm very encouraged. I've now increased my Neurontin and am getting the Propanalol down to almost nothing and headaches are much better and the tremmors are back under control They got very pronounced right along with the nasty headache. I had several hours today where I really felt actually good, like I haven't felt in months. I was actually able to stand without holding on to anything, feeling just a little bit like I wanted to sit, but nothing like it has been.
I'm coming off the beta blockers because of the feeling of walking on a ship at sea, so that feeling is decreasing as well. So, I'm hopeful that at least the Neurontin will be a good support for awhile.
I'll let you all know more in another few weeks how things are going.

Marlana

[Betty]

Thanks for the update Marlana; I hope the Neurontin continues to give you a more 'normal' life. It seems it works well for most who can tolerate it.

Sorry to hear you had another migraine attack while trying to regulate your meds. I had those years ago and I know how horrific they can be.

Do keep us updated on your progress.

Betty

[Marlana]

Hi Dave,
Yeah, I'm still waiting to get some of my money back for the walker. I have to say, the walker is such a relief. I don't use it in the house, and not even down at the clubhouse in our senior neighborhood where all the activites are. I can usually manage fine where there are walls to lean on.
I take the walker with me when I need to go in an unpredictable place, like shopping or doctor appointments in hospitals where I might get stuck waiting for elevators. Wow, what a relief to sit when I need to. I don't really need the walker for walking even, I just need it for the balance and the sitting.
I did stop going to physical therapy, for the same reasons. They don't know what to do except try to teach me balance. I found that I actually got more depressed going to therapy because it put the OT symptoms in my face and then gave me no hope of getting better. I have to pay $25.00 a session, so that seemed a little silly to me.
Anyway, now I'm on Neurontin, and my OT symptoms are much improved for now. I can stand a minute or two with some wobble, but definitley better. The tremmors themselves are almost nonexistent, at least for a few minutes. I can feel them inside, but others can't see them. I can get by with leaning rather than sitting when I need to. For now, it's much better. I know it's not a cure, but maybe I've gained a little time of feeling better.
I feel so lucky to have finally found a doctor that seems to be listening to me and respects my own intelligence. That alone helps a great deal.

Marlana

[jolarson]

Marlana, keep us updated on how the Neurontin helps. It didn't help me because of quickly having terrible side effects. But, perhaps I didn't give it a chance. You are so fortunate to have found a doctor that understands, I've never had that in the many years of having OT. Again, keep us all updated, thanks.............

[Marlana]

Hello jolarson, I am sorry that the Neurontin didn't work for you. I know about those side effects, I had a horrible confused feeling when I tried Topomax, which is also an anticonvulsant like Neurontin. So I was a little reluctant to try Neurontin, but have never felt anything negative with Neurontin except maybe a little sleepy.
So I guess all I can say is that you might consider trying other meds, I do know it's discouraging to try meds and feel awful with them. Yet, it can sometimes be worth trying that one more time. I tried the Topomax, for migraines, about five years ago, Prozac also for migrines, yuck! So, don't beat up on yourself for not tolerating those side effects, sometimes they are just too much.
I'm still in the transition phase, and having migraines every day just like I did with the beta blockers, so my hope is that I can increase the Neurontin to a level that will help with the migraines and not make anything else any worse. We'll See.

Marlana

[jolarson]

Marlana, hope the Neurontin continues to help with the standing, shaking and anxiety issues. I seem to have a low tolerance for medications. I have had OT for years, tried everything, every med, physical therapy etc. with no success. I do take clonazepam when I go out of the house or find myself having an anxious time and I was able to build up a tolerance to it but still on a low dosage. My daughter has severe migraines and has had help from topomax. I also was given topomax and three days later could not spell my own name etc.! Those side effects plus the fact that I still couldn't stand is comparable to not only topomax but all the other medications that I've been given at UCLA where I was diagnosed. So, I'm thinking good thoughts for the Neurontin to continue to help you. Having OT and migraines must be very devastating for you, one is enough to deal with.