I had my first neuro visit today with a guy that my rheum highly recommended. I have been complaining of muscle weakness and being off balance. I have also been having discomfort in my chest and arm and EKG and chest x ray are normal. I have tremors in my head and neck as well.She of course was calling it fibro symptoms but sent me to the neuro.
All he did was check my reflexes and balance. He observed the tremors in my head and neck and called them essential tremors. He said that the only drug he could prescribe for this was not possible in my case due to my breathing med. he suggested that maybe I should drink wine to see if it affects the tremors and makes them go away and recommended physical therapy. My other choice is to live with the tremors.
Btw he also suggested that maybe my kidney disease had something to do with the symptoms especially after I told him my kidney function and b/p are not in control.
Next I think I will look into alternative therapies since he is obviously not going to help me. I am frustrated.
Hi Cassi,
Sorry to hear your visit went so poorly! I just found out today that the new neuromuscular specialist I've waited 1.5 years for has cancelled my Oct appt and put it off til November. I have similar issues with muscle weakness and balance.
I wonder if neuros just say "fibro" or "Sjogren's" and dismiss us all! I'm hoping for a diagnosis too and hope for nothing miserable (MS runs in family, muscle wasting getting worse) but would like to know how to slow down whatever process I have.
I have a great naturopath who has helped with digestive/skin/dryness issues but she is stumped by the fact I get dizzy stirring soup and can't open my new eye drop bottles any more. Now that is an important life skill for us Sjoggies!
Good luck finding more help
Kendo
So sorry to hear about your less than perfect visit with your neuro. I had a neuro who was less than helpful for me as well and I decided not to go to him any longer. If you are not happy with a dr, you have the right to switch.
I am amazed that he told you to drink wine to see if your tremors go away, that sounds a little bizarre to me, but what do I know?
Have you been tested for MS? Have you been tested for thyroid or sugar problems?
Keep us posted.
Sending positive thoughts and prayers your way.
Cassi,
I am so sorry to hear of your extremely unproductive neuro visit (I would say that that is an extreme understatement!!). It makes you wish that these docs had to endure what we have to endure, so they have some empathy and are willing to treat us properly.
What I have to say next may be considered not PC on this board---I don't know yet if that is so. If so, take it under advisement and look into it.
I have learned the long, slow, very hard way that what we endure with these illnesses have a number of causes, which are only known to some docs---not the establishment docs. And what knowledge they have is still a work in progress.
However, the most important and overlooked cause is unrecognized pathogens, especially Neuro-Borreliosis (neurological Lyme Disease) and many other Tick-Borne Diseases.
Please do not just say, "oh, I've been tested and was negative," or "I've never been bitten by a tick." It is very, very tricky to test properly and interpret the test. In addition, Borrelliosis should be a clinical diagnosis----even the CDC says that----meaning that the doctor should take symptoms, history, etc. into account more than simply test results. There are no really good tests for Lyme, except for a culture test that isn't used too often.
This is a huge subject, which is beyond the scope here, but I suggest watching a documentary called Under Our Skin available for free on Hulu.com, and probably watching it twice! Also, a book called, Cure Unknown by Pamela Weintraub. Both of these will give you a good starter education on the unrecognized causes of our so called "autoimmune diseases" and neurological illnesses.
The sooner you look into and address these causes, the sooner you can begin to stop the on-going damage that is occurring, which otherwise will go on indefinitely, taking more and more of our lives away.
Do not think that any of your current docs will be able to properly evaluate or treat you for these likely pathogens! They won't be able or willing to. It's a huge political hot potato that the documentary and book go into thoroughly.
Dear Cassi and Blue Pearl and all:
Is there a treatment for the on-going effects of Lyme Disease?
My sense is that very few doctors have knowledge about complex auto immune conditions, and I also sense that there aren't many treatments available.
When I had balance and muscle weakness, the neurologist found neuropathy. But there isn't any real treatment for my neuropathy because the CAUSE is unknown.
There aren't many treatments when the cause is known, actually.
A work in progress is the right answer Blue. And however much we wish doctors would SAY, "you know I don't know what is going on and I don't know how to treat you", instead of being miserable fools and dismissing us as if WE were the problem, that doesn't happen.
As always I say, go to a first class medical center at a medical school hospital. Even then there are miserable fools there, but the chances are greater of running into doctors who know what they don't know and are willing to admit it.
The biggest harm we do ourselves is in believing that 1) it's' somehow our fault and 2) there is an answer and "they're just hiding it".
Both modes of thought are soul destroying.
3) The THIRD horrible thought of course is that because of our array of presenting problems, some completely different medical problem is going to be overlooked, something curable or treatable and NOT related to our autoimmune difficulties.
I try to keep the horrible thoughts in their cages, but it's really really hard.
Thank goodness we have each other.
Hugs
Elaine
Thank you everyone.
He did at one point say that there was nothing he could really do for me. He acknowledges that the symptoms are real and that I am not making it up but I would like some help here. How is it going to look when I invite a potential new Board member and he/she gets distracted by my constant head and hand tremors. Of when I do public relations and my symptoms get in the way.
I had a partial thyroidectomy so I get checked regularly on that. My sister has MS and I thought some of my symptoms could be similar but I will be 62 this week and onset is usually by 50 so I don't think that is it. I even wondered about Parkinson's but he said the tremors are different.
I started researching homeopathic remedies and will see if my insurance will cover accupuncture. First thing I will add is b complex and will see what else will help.
Thanks
hi Cassi!
Have you been to this site: http://www.essentialtremor.org/Treatment
They have a tab for ET specialists, perhaps there is one in your area, they also mention "responsible drinking" under treatment.
I know klonipin helped me greatly with movement disorder, and I see it is listed as possible tx for ET, I don't know if it would interfere though with anything of your current conditions/rx.
Anyway thought there might be info for you in case you hadn't been to site yet.
Take good care,
Dee
He might of been talking about Propranolol, that is the one I can't take because it makes my breathing worse.. There is one brand name Mysoline or generic Primidone that helps and didn't affect my lungs.. But I became allergic to it and had to stop taking it..
And actually if it is essential tremor alcohol will help for a short time.. I think i've tried every treatment they have for it at one time or another..
Klonopin or generic name Clonazepam is a benzodiazepine.. The only thing it did for me was to ease the pain in my neck and shoulders that the shaking caused.. It didn't stop the tremors for me..
Dee thank you so much for that link! I found a specialist listed in Edison NJ and if he takes my insurance that would be doable. Reading the coping techniques helped. Stress does make the tremors increase and unfortunately I have. Been under a lot of that lately with my job and with my teenage son who has his own issues going on. My writing has become shaky and I like the idea to buy a heavier pen. I can barely put my usual clear coat of polish on my nails because I now tend to paint my fingers as well so it would not be a terrible hardship to go for a manicure!
Iris thank you for sharing your experience with ET. He did order Mysoline but told me about the side effects. I can't be drowsy while I am working and other side effects mentioned loss of balance and that is one of my issues that I thought was related. I already trip over my feet now and I don't want my next move to be on the floor.
The way his questionnaire was structured and the way he questioned me made me forget to tell him about the chronic costochondritis. The more intense my rib pain is the more my tremors increase. Wonder if this is the part about stress increasing tremors? is there a connection between the two?
I think a few of the med choices were eliminated because of my medications for asthma, kidney disease and hypertension.
Here's an odd trivia question for people on Plaquenil. For a few years starting when I was dx with kidney disease my nails got soft and would peel. I was down to stubs. Since starting Plaquenil my nails have gotten harder again and have grown. Has anyone experienced this. Mind you I am not complaining, just happy to have healthier looking nails.
Cassi and Carolina and everyone,
Yes, there are treatments for people with Neuro-Borreliosis, or neurological Lyme Disease (and other Tick-Borne Diseases). As I said above in my post, I suggest starting with watching Under Our Skin, a documentary about Lyme that is available for free on Hulu.com. And also reading, Cure Unknown by Pamela Weintraub.
Also, people can go to Lymenet.org and get lots of info and help.
I am a practitioner and do consults with people from all over the world about Tick-Borne Diseases, but I am not here to get work! I just want to let people know that there are causes for Sjogren's, etc., and there are treatments that aren't simply palliative. It's completely sad that there is so much ignorance and much worse (deliberately burying info about this serious epidemic) in both the medical field and in lay people. The documentary and book explain it all very well. And explains how all of the neurological and "autoimmune" diseases have pathogens as their cause (along with a lot of other issues that need to be addressed).
Cassie, your situation is serious, but I couldn't help but visualize the scene where you have a drink to reduce the tremors and ask a new board member to join both with your tremor AND alcohol on your breath at 10 AM! That should guarantee a "yes."
Hugs, Sharon
Oh, my son has an Essential Tremor in his hands.
He's a doctor, but surgery was ruled out early on as a specialty.
Can you imagine talking to your surgeon before the surgery and seeing that tremor?
He seems not to worry about it, nor does it seem to affect his life much.
I've never thought about it being a problem other than 'appearances'.
Always learning something.
AND I love the idea of drinking as a cure, as if we didn't already have enough to drive us to drink!
But, alas, I do not drink as it is not in my best interest.
I learned that we must always do what is in our best interest, while being kind and useful to others.
Hugs
Elaine
Hi Cassi,
I had that same neurologist visit experience at least three times! >:( I came to believe that all Neurologsts were worse than completely useless until I was forced to see my current one, who is excellent.
Yes, essential tremor. No help from the Neurologist. You come to hate the neurological physical exam - I think some Neurologists conduct that on every visit just to get paid for it - I believe your head could fall completely off during their standard exam and they would tell you it was normal!
For me (only), I shake when I do too much. If I walk too far, or too fast, I start shaking, moving slowly, and might freeze in place.
In Parkinson's Disease the moving slow is called "bradykinesia", and the freezing in place is called "akinesia". I have those symptoms, and Sinemet stops it, so technically I have Parkinson's by the "responds to Sinemet" test, but my doctors choose not to diagnose that, which is fine with me.
I asked this excellent neurologist about this essential tremor shaking. He gave me the best answer yet but it still has no cure: he said that the tremor was caused by muscle weakness. You use the muscle until it has nothing left to give, then you start shaking. As physical therapy does not help me, rather it simply exhausts me, and Sinemet makes me even more fatigued than my usual massively-fatigued state, my only choice is to do very little physical activity.
This agrees with my "huge discovery" regarding tremors and freezing in place (especially after a shower), which is that I don't have them if I don't do much of anything, or else go really slow.
As a result, I completely changed my life so that I don't do much of anything. No more taking a quick shower and then quickly getting dressed - that doesn't work anymore. I literally freeze up and stop moving if I push too hard, then I start shaking and have to rest - aka crash.
I can do about a half hour of anything, but if it is intense activity the next day is lost to crashing. I call this the "push-crash" lifestyle. Doing very little, and also doing that very little-very slowly, is called "pacing". I prefer to pace, and do it by default to avoid pain and shaking, however, life's little emergencies demand "pushes", there is no way around them, so I just try to minimize the urgent required 'pushes" that life throws at me.
I hope this ramble helps someone.
Thanks for telling me about your son Elaine. My tremors affect my head as well as my hands and I feel like a bobble head toy. Today I was sitting in the pharmacy waiting for an rx and there was this other lady also waiting for hers. My head nodding was pretty active and I swear she kept stealing glances my way.I feel self conscious. Maybe I will get used to it and maybe the drug will do it's job so that I don't see it at all. I would like to know what is causing the muscle weakness.
Sharon my dad was an alcoholic and I can barely tolerate the smell of alcohol. I can tolerrate wine and cook with it occasionally. If I have even half glass of wine I am ready to drop off to sleep. I am a cheap date lol. Elaine the neuro really wants me to try a glass of wine "for him" just to prove the effect on the tremors. I just have to remember to go buy it.
Cassi,
That is essentially malpractice that the neuro told you to drink to stop the problem!! Unreal! It is a serious neurological problem, not just something to slough off with such an irresponsible comment (not that I need to tell you that!).
Please, please do investigate the information that I said about Neuro-Borreliosis, because there is an unrecognized epidemic of these pathogens causing neurological and "autoimmune" problems. You won't find anything other than palliative treatments if you pursue the "regular" medical establishment's treatment of these diseases. We are an "inconvenient truth" for the establishment. Please research this; your life depends on it---as it does for all of us. No one else can do it for us.
Oh Paisley!
I know the push-crash style of life.
So I don't push.
I spend a LOT of time sitting in a chair as a result, or on the bed, which I prefer cause it's easier on my knees.
But it REALLY bothers people to find me lying on my bed all day....so I sit in a recliner. Books and my computer are my salvation, and the phone to some extent.
My push/crash is mostly because of the extreme difficulty I have in walking/moving, the fatigue that results, along with the regular fatigue of Sjogren's (etc) and the temperature dysregulation which causes horrible sweating the moment I move around.
Just going to the grocery store and coming home requires an hour of recovery.
No one 'gets it' at all. that's OK most of the time.
My volunteer group was decorating for a fund raiser that we were helping with, and I wanted to help. But I realized that I couldn't hang decorations, stand on a chair, move tables and chairs around, lug boxes of stuff....what would I do? Nothing. So I didn't volunteer.
That was sort of sad for me. Cause that used to be my favorite activity........team work to get something fun done, not heavy labor mind you, but fun stuff.
So for that group I was Secretary and now I'm Parliamentarian, and I am the one who sends out the Sunshine Cards (ecards and snail mail) and I do the organizing for a couple of book groups.
For political things I can make phone calls. So there are ways to be useful.
As for people staring, Cassi, I try to remember that at base people are animals. All animals watch other animals very carefully to see if that animal is like them, injured, sick, wounded and might attack, etc. We scan our surroundings carefully. Should I run, should I stay, should I fight?
My sister was in a wheel chair and people stared. They wanted to figure out what's wrong, will it get better, can it happen to ME?
She said people were really upset when she said she wasn't going to get well and get out of the chair. People are people.
They operate out of fear and doubt a great deal of the time. Is that person shaking? Are they drunk? Are they having a fit? Are they OK? Am I ok? At the basis of it all is, AM I OK?
People are really just thinking about themselves. You just happen to be there.
My joy in life is to try to transcend thinking about myself long enough to be kind and useful to others. I don't do a very good job, but the process helps me have a more peaceful life, I do believe.
Again I mention the book: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard and Sylvia Boorstein.
It is really a book about how to live. Heaven only knows we have to live with a lot of 'stuff' so we might as well learn to enjoy it.
Hugs
Elaine
The lumbar puncture, cerebro-spinal fluid test for lyme is accurate, right?
Paisley
It is just awful where life takes us sometimes. The challenges we face are tiring just to think of them. Like you, I am now going to have to find new coping mechanisms and living the best way I can.
We learn from each other. I am thankful for the support and understanding and suggestions.