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  • How to make the best of my appointment with a Neurologist?

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    Old 04-05-2004, 04:21 PM   #1
    jkc120
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    Unhappy How to make the best of my appointment with a Neurologist?

    Hello All,

    I've been having some general neurological and musculoskeletal problems for a few months now (and seems to be getting more pronounced/worse).

    It started out back in October or so when I found a lump on my testicle and was worried for a while before having an ultrasound (turned out to be what think is a cyst). But I think the worrying/anxiety from that ordeal is what triggered my symptoms. Since, I started having lower back stiffness/pain and then I developed a tremor and a tingling or odd sensation in my legs (kind of feels like water hitting my legs in the shower). The hand tremor is not there when I just rest my hand off of my desk chair for example, but if I rest my arm and hand with my fingers slightly bent on the table and lift my left thumb, it tremors back and forth in the so called pill rolling way. Pretty much all my fingers do this, though it seems to be more pronounced on the left side. I don't know if it's the same thing or not, but when I'm eating and bringing a spoon/fork to my mouth, it shakes on its' way. Also, the middle toe of my right foot will twitch back and forth in a similar way to my hand.

    I've also had muscle spasms all over my body (not sure if the 'shower sensation' is actually minor muscle spasms or what). My muscles also feel sore a lot of the time, especially after exercise. I seem to be ok playing sports, but my legs get really shaky/wobbly when playing, though I seem to play ok. Similarly, when I lift weights my arms are shaky. Along those same lines, my tendons are cracking A LOT.

    Because of the anxiety/etc or perhaps it's unrelated I've been irritable/depressed but that seems to come and go a bit.

    I know that's a ton of symptoms, but I'm hoping someone can give me some suggestions for my neurologist appointment. What to say, what not to. Will he think I'm crazy if I take the list of symptoms in? My PCP basically cut me off as I was reading off my problems and told me it was anxiety. But can anxiety really cause all this stuff?

    *EDIT* Oops I forgot to mention that I've also been having neck pain/stiffness quite frequently and I'm a 27 year old male.

    Thanks in advance everyone!

    Last edited by jkc120; 04-05-2004 at 04:30 PM.

     
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    Old 04-05-2004, 07:25 PM   #2
    Googy
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    Re: How to make the best of my appointment with a Neurologist?

    Write everything down.If you are not satisfied with this Neuro.Go to a M. D. S. they know more.

    Good Luck,

    Googy
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    Old 04-27-2004, 03:48 PM   #3
    jkc120
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    Unhappy Re: How to make the best of my appointment with a Neurologist?

    Quote:
    Originally Posted by Googy
    Write everything down.If you are not satisfied with this Neuro.Go to a M. D. S. they know more.

    Good Luck,

    Googy
    Ok, my neuro seems to think I have ET, and prescribed 80mg of Inderal. I'm going to take the first dose tonight and give it the benefit of the doubt for a couple weeks to see if my symptoms improve.

    I'm still concerned that all he heard/focused on was the hand tremor. I'm concerned that I have the hand tremor, but also the toes in my right foot still twitch back and forth frequently, I've been having muscle spasms all over, and I feel off balance/wobbly on my feet and my muscles feel shaky/weak, though I'm able to lift weights normally from what I can tell. How would I go see a MDS? Do I just ask for a new referral from my doctor for a "MDS" or does it have to be a neurologist who specializes in MDS? I'm not sure what to ask my PCP for.

    Do the symptoms sound like Parkinsons? I feel like I've had this for a long time and the symptoms are building up slightly and getting progressively worse. I'm hoping the Inderal works, but everything I've read indicates it's for tremor only - so what is my neuro thinking that it would help with the toe twitch, muscle spasms, unbalance/wobblyness, and muscle shakiness/weakness?

    I wish I had a blatant/easy to describe/show symptom. This stuff is impossible to describe to the doctor's. I feel like they think I'm just crazy or something, but I know I don't feel right and haven't for a while now.

    Anyway, thanks in advance!

    Last edited by jkc120; 04-27-2004 at 03:49 PM.

     
    Old 04-28-2004, 12:58 PM   #4
    Vic15
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    Re: How to make the best of my appointment with a Neurologist?

    Hiya JKC120

    In response to your posting I do hope that I can help. Firstly I can wholly sympathise with you I as have been experiencing the same symptoms as yourself with additional problems such as electric shock like foot and arm pain-but the muscular stiffness is causing me much distress at the moment- and I too have the same fear of PD as yourself. I am 23 years old.

    In hindsight and through the dreadful last four months I have had trying to get to the right people I would strongly recommend that you get a copy of a medical journal (a good library should have these) and look up articles on movement disorders for names of leading MDS authorities in this field-then ask your GP directly to be reffered to that specific person. I don't know where you are based but I have the names of two professors who specialise in movement disorders in the US and also in the UK. I am advising you to be proactive with this concern as that is how I have had to be-otherwise you could end up seeing numerous doctors and specialists-as I have-before you finally get so depressed that everything seems to be put down to anxiety and feel like the whole world and its friend think you are mad-when you know you aren't. I know just how hard it is to explain what you are experiencing-especially getting the right words, this can be a nightmare!

    I personally think your neuro is trying to rule out ET to be honest as if this medication controls the problems you have experienced the higher the likelihood that it could be ET.

    I hope this helps you find a way forward.

    Best Wishes,

    Vicky (Vic15)

     
    Old 05-20-2004, 03:31 PM   #5
    jkc120
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    Unhappy Re: How to make the best of my appointment with a Neurologist?

    Well, just an update...my balance continues to get worse and the frequency of my staring episodes is increasing, both the length of time and the number of times a day I'm noticing myself "zoning out". Also the tremor seems to be getting worse and I've noticed my forehead has been really greasy and shiny - I haven't had skin problems like this since I was a teen.

    I'm going in Tuesday for an EEG, but it's my understanding that an EEG shows normal for PD, so what else could my neuro be looking for? Is there a test I can ask him to do or some other thing I can have him check? Should I flat out ask if I have early onset PD? I know I'm really young to have it, but I'm just at a loss as to what could be causing all these PD symptoms then. Just a recap:

    - tremor in left hand and slightly less noticable in right hand, but mostly postural in nature (that is, it's a resting tremor, but only when I lift my arm or finger or whatever against gravity)
    - snapping tendons/tight tendons
    - resting tremor in right foot (mostly in one toe, but also in one or two of the others). this happens off and on, and watching it, the toe moves back and forth on its own
    - instability when standing. this is hard to describe, but I feel like I can't stand upright still. I feel like I'm off balance or wobbly or like my legs are shaking.
    - neck and back stiffness/soreness, especially right after I wake up
    - leg stiffness when I'm sitting in one position for a while - notice when I go to stand up or walk or whatever after standing
    - muscle spasms all over - most notably in the tricept, quads, and face (jaw/cheek)
    - greasy forehead and area under eyes next to the nose
    - staring more and more frequently. what I mean here is I will find myself "staring off into space" and I've even had my wife ask me something while I'm doing that and I HEAR her but it's really tough for me to snap out of it manually to respond. Usually 10-15 seconds later I snap out of it normally and then I respond. But this is happening more and more and it's scaring the heck out of me - it even happens sometimes when I drive! I am fully aware that I'm doing it and can even move and do something else, but I continue to stare off into nothing and don't blink.

    My PCP and wife have brought up the fact that it could just be psychosomatic and a result of worrying for an extended period of time over other health issues, but how can a balance problem when standing and greasy skin and stiffness/snapping tendons be psychosomatic? Plus it's just frightening that all of the above fit the PD symptoms to a T. But I'm only 26 (almost 27). Am I just doing this to myself? If it IS psychosomatic/hypochondria, how do I reverse the effects of it? The muscle spasms/tremor/staring/balance is starting to affect my work and sports I play.

     
    Old 05-20-2004, 08:37 PM   #6
    Googy
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    Re: How to make the best of my appointment with a Neurologist?

    Are you on any kind of Meds?

    I still say see a Movement Disorder Specialist. Actually our friend who was Bill's neurologist sent us.It was the best thing we ever did at that time.
    There are many your age who have PD. Ask your neuro to suggest one? You need it.
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    Old 05-24-2004, 02:03 AM   #7
    NHone
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    Re: How to make the best of my appointment with a Neurologist?

    Hi, not a lot of symptoms. My Mother had the same symptoms. She had low magnesium. You can't do a normal serum test for magnesium. Bet your doctor says you can. Well he's wrong. Only less than 3% of magnesium is in the blood the rest is intracellular. You need an intracellular test. Mother had her tests done at Spectracell in Houston. It is covered by medicare and normal insurance. Have all of the tests done that they offer. Could be that you are low o other vitamins as well. Your symptoms all sound like hers. She is doing well now. She didn't have the staring...but she did have depression and she would seem deep in thought. Low magnesium causes depression. They originally told my mother that she had ataxia...but they she had cerebellar ataxia, but they were wrong. It was all low magnesium and some pheripheral nerve problems caused by Lipitor. What ever they tell you they think you might have DO THE SPECTRACELL tests. Do these first. it will save you a lot of mental stress. Good luck, do your research and don't just take the doctor's word for anything.

     
    Old 05-24-2004, 10:11 AM   #8
    jkc120
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    Re: How to make the best of my appointment with a Neurologist?

    Thank you so much for the suggestion! Yes, I've only had the "normal" blood tests, CBC, diff, and I think liver and renal function. I'm not 100% sure, but I think they did some sort of thyroid test as well. Not sure if it was testing for hypo/hyper or not, but they said it was normal.

    So I should ask my neuro about a "spectracell" test for mineral/metal/vitamin deficiencies? Would my neuro refer me back to my PCP for that or would he be able to order those sorts of tests? What specifically should I ask him to test for?

    Thanks in advance!

     
    Old 05-25-2004, 01:36 PM   #9
    SafetyJ2006
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    Re: How to make the best of my appointment with a Neurologist?

    I have had PD for more than 10 years. I am a 56 year old retired Army master sergeant and while my tremors have increased slowly over the years, especially in my legs, my mobility has not decreased to any great extent that I can't pretty much do what I always did, only slower.

    PD effects people differently so just by reading your symptoms I don't believe the disease can be ruled out. I will say I never had "pill rolling" movements in my hand. I know many people with PD and most of us have different sets of symptoms or different symptoms that cause us concern. What I do is keep a journal and track my symptoms. I make note of new ones and times they occur in correlation with my meds.

    I recommend you write down all of your questions and concerns and present them to your neurologist. He will appreciate having the information.

     
    Old 05-25-2004, 05:31 PM   #10
    Googy
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    Re: How to make the best of my appointment with a Neurologist?

    JK,

    Time will tell what this is.Let us know when you check in to see a MDS.Please do this.I am very concerned we all are on this Board,but it is hard to know what to say. Love,

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    Old 05-25-2004, 06:23 PM   #11
    jkc120
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    Re: How to make the best of my appointment with a Neurologist?

    I will definitely check back in once I've talked to my neuro. I just had the EEG today. I guess they were trying to rule out a seizure(s)? I don't quite understand how he could think I am having seizures, but he's the expert.

    What scares me is there's no test for Parkinson's. And given my age, I think he's totally overlooking PD as a possibility, but I have many of the symptoms! So how does he diagnose PD, just based on a differential? What if all these symptoms are just anxiety induced? Is that possible? I feel like I'm in a downward spiral. But whether it's the PD getting worse or my anxiety making things worse (in a vicious cycle) I don't know. But with no way to diagnose PD, how is my neuro going to do this? How do I keep myself from continuing the anxiety cycle if it's NOT PD? I guess if it is PD, I should see a psychologist or something, because I don't see how I can go on living each day knowing I'm not going to live long enough to see my kids grow up if I have children soon or any number of other things. I can see how PD leads to/is associated with depression. At my age, my life would be cut short by over half.

    So I guess I will call the neuro tomorrow to schedule a followup and when I see him, I will express my concerns that I think it might be PD and ask him about a movement disorder specialist. Will he be offended that I'm asking for an MDS, since he is a neurologist? What's the best way to ask him about PD without coming across like "hey, I know more than you just because my symptoms match closely what PD looks like". I don't want it to come off that way, but I know my body, and I know the symptoms I've been having. Then again, what I don't know is whether the symptoms are psychosomatic. Any advice on how to approach my neuro to have him seriously consider PD would be appreciated.

     
    Old 05-25-2004, 07:22 PM   #12
    Googy
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    Re: How to make the best of my appointment with a Neurologist?

    Write down your concerns.Take them to him. You need to take matters in your own hands.You are able to do this.Let us know !

    Good luck,
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    Old 06-05-2004, 01:00 AM   #13
    NHone
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    Re: How to make the best of my appointment with a Neurologist?

    Hi. Your neurologists can order the Spectracell tests. Spectracell will send him the collection kit and elplicate instructions, and also a pre paid air-borne return box. Spectracell is in Houston. You can look them up on the web. The site will show you all of the tests they do. Insurance will cover it. If yours won't the entire panel is less than $1000. Also there could be Parkinsonism. This is symptoms of parkinson's without having parkinson's. It just mimics parkinson's. Can be caused by nutrient deficiency.

     
    Old 06-21-2004, 04:46 PM   #14
    jkc120
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    Re: How to make the best of my appointment with a Neurologist?

    Just another update...After the EEG, which came back normal my neuro suggested doubling the dosage of Inderal to 160mg (time release) per day. I've been on that for a couple of weeks and still don't notice a difference in the tremor.

    My forehead and nose are definitely shiny/greasy which they've never been, and I'm noticing a lot of saliva in my mouth and a "lump in my throat" feeling that doesn't go away when I clear my throat or try to spit.

    I just got off the phone with my neuro's receptionist and he is taking me off the Inderal and trying Mysoline. I read a bit online about that, and it looks like it's for Epileptic seizures. Would an EEG have ruled that out? It seems like he is focusing only on the one symptom, whereas I feel like I have multiple primary (tremor, muscle stiffness, trembling, loss of hand agility) and multiple secondary (greasy forehead, excess saliva).

    Well, I guess I will just hope the mysoline helps, but I'm not too hopeful. :/

     
    Old 06-25-2004, 03:36 PM   #15
    rosco2
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    Re: How to make the best of my appointment with a Neurologist?

    JKC,
    Have they checked you for cogwheeling? That is how my dad was diagnosed with PD. It went undiagnosed for a long time and then a trip to the right neuroligist took his elbow and bent his arm and within 2 minutes said "He has Parkinsons" I hope you don't have it, but maybe this will help?
    Good luck to you.

    rosco

     
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