Many of our members have visual challenges which make reading a large block of text difficult if not impossible. I have taken the liberty of breaking up your post.
At the insistence of my PCP, RN, and Orthopedic doc at 3 separate offices for neurology work-up, I am getting frustrated with the fact that it's been very difficult to find a decent Neurologist.
I have Fibromyalgia, diagnosed about 2 years ago. I do my best to listen to my body and I've managed to "take it in stride"...I've had "flares", good days and not so good days.
So, over the last year or so, I've had this symptom ( maybe a few times a week or may not happen for a couple weeks) of a tingling sensation (with a buzzing sound in it) the goes from the base of my skull, up over my head to my forehead. When this happens, I feel fuzzy-headed and stumble with balance issues. When I first told my PCP about this, he said if it continued, he wanted me to see a neurologist.
Fast forward to about 2 1/2 months ago, and my body seemed to go haywire. Thought I was having a really bad "fibro flare" and about a week into it I realized this seemed like much more. Knowing that it was probably time to set up neuro appt soon, I looked up how best to prepare. The main thing I read was keep a daily log or journal of problems and symptoms, got a binder and did just that.
Some of my symptoms over this 4 week flare-up were ears ringing, eye pain (especially when I'd move my eyes to look around) and with light sensitivity, if close my eyes while standing I'd fall sideways, extreme muscle weakness like I've never experienced in arms, legs, and back, back pain, tightness/ pain from kidneys through lower back around my belly, for 2 days right half of bottom lip was numb, shooting electric shock pain- mainly in chest, abdomin, and legs, pins and needles, feeling like bugs crawling on me, chronic fatigue ( the need to sleep 2-3 hours by noon time I would collapse in chair),
(I have) trouble finding words ( started avoiding phone calls), mixing up words and stopping mid-sentence forgetting what I was talking about, my handwriting was awful ( normally neat), tripping and stumbling while walking, bumping into furniture and doorways, dropping things, trembling from muscle weakness, the last three summers I hibernate from the heat, stopped driving at night because of the "tunnel effect", muscle spasms and cramping, swallowing some days is difficult ( forceful swallowing), tingling areas on scalp...
This isn't the entire list, but you've just read more than the 2 Neurologists I've seen. I took the list and daily journals with me and neither of them asked to go over it, copy it, or even read any of it.
First Neuro had me in her office for about 15 minutes total, I was explaining the muscle wekness and started crying trying to tell her how exhausting it was just to come to her office. In the midst of me being upset, she took my BP and it was high...what a shock! She took it 3 times in a row and decided that I had high BP and since I get headaches, she gave me a script and an order for Brain MRI without contrast to check blood vessels.
I have developed an EXTREME sensitivity to meds over the last 2-3 years and much to my dismay and that of my PCP, it's been difficult to control my fibro symptoms.
Second Neuro asked more questions but pushed the CD of Brain MRI back to me and read the radiology report from it and said, nothing there only sinus inflammation. Again, I explained my med issues...he didn't care. He prescribed a med and told me "If you have side effects, call me, do not stop taking the medicine, or I will no longer be your doctor".
And with my job ( Caregiver for adults with developmental disabilities) I told him, I can't wait out side-effects because I administer meds and the individual lives with me, so I'm the primary caregiver. He told me maybe I should quit my job. Needless to say...not going back to him either.
WHY is it so difficult to find a doctor that is interested a me as a person AND will actually take time to listen?! I think I prepared as best as I could. When I saw the Ortho doc for tennis elbow, he said I have no doubt that you have tennis elbow, but there is a much bigger picture here...he said possible MS, I had no idea what the symptoms were or what it was. When I read the symptoms, I sobbed,,,all I could think was "Oh my gosh, That's me!"
I'm so frustrated...thoughts and suggestions PLEASE!!!
It's frustrating when there are more questions than answers. Most of us have been down a similar road, given the elusive nature of an MS diagnosis.
Because MS attacks the central nervous system, its symptoms cover a wide spectrum. Many of the issues you mention may be realted to MS, and they may also be attributed to one or more of the many MS mimics.
You have seen two neurologists, and gotten two different answers. Was either of these neuros an MS specialist? If you want to rule MS in or out, you need to see a neurologist that specializes in the diagnosing and treatment of MS.
Your documentation of your symptoms is very thorough. It may not be right, but the chances of you running the entire list in a single office visit are slim and none. The more symptoms you try to squeez in, the more likely you are to lose the doctor's attention. They are only human after all :-)
I would focus on the top three symptoms in terms of their impact on your quality of life. Bring your entire list with you, but unless they ask for it I wouldn't provide it.
I owuld also refrain from discussing what other doctors have said. Let the doc do the work. There is no reason to give them any ideas about what's going on.
I'm not sure where you'r located, but there is likely to be a local chapter of the Natl. MS Soc. THey should be able to help you find a neuro.
Thank you for your response! I have honestly made no assumptions when it comes down to finding out what is going on with me or diagnosis, I am actually very quick to blame having fibro for most everything. I have never gone from one doctor to another and made any suggestions or relayed any possible previous ideas of what may be going on with me.
I did have a previous "flare" about 3 years ago, started with a bout of "vertigo" which I'd never had before, 2 days later I went to ER with chest pain, that was found to be non-cardiac related. I also had muscle weakness and could not tolerate the heat. ( and many other things). during this last "flare" was when I'd connected those symptoms, asked my PCP about the dates, so that was my first big "flare"...3 yrs. ago.
Maybe I expect too much from doctors, but these 2 neurologists were all in all, short with me and rude. The day any doctor thinks it's ok to tell me that I HAVE to take the meds, it's his decision, not my choice, regardless of side effects, is when I move on.
I truly didn't overwhelm them with info, 1st one had no interest. 2nd one kept talking over me. I didn't expect to go over every symptom, but even my PCP made copies of some of the pages to look at at a later time.
I don't want to sound like I'm complaining, if I came on strong in my post, I didn't mean too. I realize getting answers takes time. It's very frustrating to now be seeking out a 3rd neurologist, by reading other stories, it doesn't sound like I'm the only one though. I'm just sick and tired of being "sick and tired".
Had labwork done 2 days ago ANA, Vitamin B 12, Creatine Kinase, and Erth Sed Rate...got results this afternoon, all were in normal range. Not sure why these were done. Is it to rule out or narrow down causes/explanation for my symptoms?
It is simply good practice for doctors to test for things that are easy to rule in or rule out in the long list of things that can mimic MS symptoms, like low b-12 levels. So, I would think you're perfectly correct; these tests were likely ordered as a pre-cursor to more involved and/or expensive testing.
Hi. Have you found another neurologist? I hope you'll have much better luck with the next doctor you see. I've been experiencing a lot of the same symptoms as you and I know just how it feels to go through those things while not having answers and wondering if you'll ever find the proper care that you need. Bless you.
Hello! Thank you for your response! I am going to call Hershey Medical Center Neurology on Monday for an appointment, they have quite a few neurologists, but I'm going to request one of the three that specialize in MS. I know that being almost a 2 hour trip one way will not be easy on me, I'm hoping it will provide me with answers eventually.
I realized after reading my original post, it made me seem/look like a rude and pushy person, which is so opposite of the person I am. After well over 5 years of not being well, and the last 3 years have really been a challenge, I guess frustration has gotten the best of me. Guilt is a BIG problem for me, every time I think I've adjusted to "my new normal", I have new symptoms and worse than the time before.
Days full of exhaustion (even when I barely do anything), pain, confusion and memory problems...and the list goes on have made me feel as if there is no end in sight some days. I'm getting very good at pasting on a smile and trying to hide how awful I feel for the sake of...no answers.
Feeling the need to talk with others that are dealing with these problems or are on the same "journey" for answers.
Thanks again!! Laurie :)
I don't think you came off rude or pushy, so please don't feel guilty about your post or about how you feel. It looks to me like you don't need the guilt on top of everything else. :) It's difficult to suffer such severe symptoms and then be confronted by doctors who don't seem to care about your condition. It makes everything that much more a struggle.
I think it's a good thing to be the best advocate you can for yourself and for your own health. It goes without saying that your life is an important thing and doing everything you can to improve your situation is something you have every right to do and I don't think you should feel bad about being frustrated with the way you've been treated.
I've also made lists and have taken them to appointments with me. Doctors aren't always willing to read them, but they have helped me a lot.
I hope you'll let us know how your appointment goes.
There is nothing rude or pushy about your post - being assertive and taking charge of your own medical care is essential, especially with a chronic disease. It sounds like this has lingered so long you fall into this category.
Don't be surprised if the neuro center tells you they can't schedule an appointment for you without a referral from your doctor. That's the usual way it happens. The doctor you did see needs to be history - it sounds like that is your thought too.
You might look at differential diagnosis for MS to see what all they look at for MS - it can be an extremely complicated dx, but a good neuro will sort it out. The first is you need a doctor who will listen to your history - that is more important than any test result.
Good luck and don't give up looking for answers.
First, got a giggle because your name is Laura and mine Laurie...then I saw "lulu"...that's the nickname my stepdad used for me as a kid. :-)
Thank you for your encouraging words! My insurance (luckily) doesn't require referrals for specialists, do you think I'll still need one?
Thank you! Your post made me feel more at ease with your kind words! :-)
I also have an opthomology appointment in about 2 weeks to get a thorough eye exam. I'll post as I go through appts.
I see Dr Gary Thomas at Hershey Med. I like him a lot. Just be warned, it can take forever to get an appointment! Call right away Monday morning!! Good luck!
Hi, and welcome to the forum. You have been a victim of one of the most misunderstood problems with getting the attention of a neurologist when you have lots of symptoms. Please, first understand that I am not standing up for either of the neuros that you encountered. My experience with neurologists - both with the seven that I saw prior to my diagnosis - and with hearing similar stories to yours is that there are far too many that are impatient and ignorant. They too often do not listen, they are too often condescending to women, and they too often see a list of problems like yours as the product of anxiety.
Actually doctors (MDs) in general can be guilty of those sins. But, let me let you in on the view from the other side. The majority of doctors are limited in the time they can spend with any one given patient. Ideally, they could quickly move through the people with simple problems and give extra time to those with multiple complaints. It just rarely works out that way, though, many of us have ultimately found docs who do just that. If you add the time constraints to a reflex arrogance and god-syndrome, you get the kind of treatment you had in your two disasters.
But, even the most patient of docs can feel defeated from the beginning by a list like you gave us. I know, that I often did. I would read through the list and try to see what main categories the problems fell into, then would try to ask some questions. If the patient's mom (I was a pediatrician) would let me simplify things we would be okay, but if there was an insistence to constantly mention more and more symptoms, I would run over time (not a huge problem) but never really get a handle on the problem.
This is a situation where less is sometimes more. When I read your post I came up with this:
Eyes - pain with movement, sensitivity to light, tunneling
Coordination - clumsy, stumbling, falling into furniture, deterioration in handwriting, falling if eyes closed, ears ringing
Bone-crushing fatigue and need for extra sleep
Muscle weakness - arms, legs, back etc.
Thinking/speaking problems - word recall, forgetting what I'm saying, getting confused
Odd sensations - electrical shocks, crawling sensations, tightness around midriff
Heat intolerance - (explain what happens when you get hot) (also be aware of symptoms listed above that only happened after getting too hot)
More emotional than normal.
Now I didn't list everything that you did, but I tried to get the main groupings. I would save the more extensive list for "further questions". The list above (plus any needed additions that I missed) should be listed in order of their importance to you. An interested doc will ask follow up questions.
However, (this is where your journal or diary comes in) blanket list of symptoms is fairly useless until the doctor finds out when they happened how long each lasted, whether any ever went away, and such details.
Things that you need to have figured out: If muscles are weak is it all muscles all the time, one side or the other, sometimes these and sometimes others? Which side do symptoms occur on? What makes each symptom better or worse, if anything? What occurred first, second, etc.?
Now, when I read your list I am concerned at how global you make some of them sound. Is it really both arms, both legs, both eyes - always? If so, then say so. If not, then, specify side or part of the body (eg. hand vs. forearm)
Now, MS is a disease of specific lesions which are fixed in location and so they cause symptoms in specific spots. The symptoms are not usually symmetrical side to side. Weakness occurs only in specific muscle groups and recurs in those same spots. Weird sensations will be different from side to side.
These differences are important to the diagnosis of MS and thus, to identifying other diseases which might mimic it. So you need to be aware of these differences too - if they exist.
Now, if the doc suspects MS it is critical - mandatory - to test for all the mimics of MS. It is actually malpractice to NOT do the testing.
Well, I have shown again why I am the President and Founder of the support group for people who talk too much:
A huge thanks to you! You're "on and on" was actually a wealth of information for me in preparing for my next appointment!!
I can most definately pinpoint certain symptoms in a more specific way and "shocks/zaps" here or "crawling/tingling" sensations there.
My PCP had done labs about a year ago, testing for auto immune findings, plus what I had last week all of which were in normal range. I do have hypothroid, which was easily returned to normal with Synthroid and didn't notice a change in better or worsening of symptoms before diagnosis or after being regulated with meds. Also, I have Raynaud's that has worsened over the last 3-4 years (fingers and bottoms of feet turn white)
Again, I say "Thank you"! Gonna tweek my info/list and hoping to have a more productive appointment.
A big hug to you! Laurie
Great. Just remember to keep the list that you hand your new neuro very simple. It MUST be easy to skim and get the points. The fewer categories the better. The details can be added with questions.
It never hurts to mention that prior doctors never inquired about your symptoms. That you need someone who will work with you.
Feeling very defeated today. Had a check up with my PCP today, he has always been so understanding, today he seemed "put out" with me because of my "dislike" of 2nd neurologist. He "in not so many words" seemed to think that I'm being too picky. Said maybe it's time to let it go and assume it's your Fibromyalgia.
I left and cried. I know how my quality of life has diminished. Just confused. :(
Can I ask what led you to end up seeing seven neurologists? Was it a continuing search for answers? The lack of interest from docs? Just curious because now I am second guessing myself.
Try and avoid over sharing info about docs with other docs. the longer your symptom list, and the more doctors you go through the less likely you will be to find a doc who takes you seriously.
It's fine not to like a doctor, many of us went through 2 or 3 be fore finding the right one, I'd just keep negative opinions closer to the vest :-)
My PCP wanted me to see a neurologist...I wasn't as brutally honest as I'd like to have been, but my check up was to check in on me and how the neurology appt went. I didnt't go there ranting. He wanted a straight answer...I had to give good reason for not wanting to return.
I want a doctor to "take me seriously" because I'm telling the truth.
Thanks for the advice Kyle!
Hi. I'm sorry your appointment didn't go well. It really makes me angry how many hoops have to be jumped through when it comes to many doctors while you're already having a hard enough time. Were you able to make an appointment with the neurology center?
I haven't made the appt yet, my PCP will have to make the referral for me. He has insisted I try Savella, so tonight I will be starting the titration pack. With med sensitivities, I needed to be sure I had no obligations, because of possible side effects.
Thankful for the cooler temps in our area this week! The previous week was our local county fair and my daughter is active in 4-H, she shows goats. The temps were hot that week and it was rough on me. This is one of those times that guilt hits hard, because I do my best to be there and support her, but the effects the heat have on me are...well exhausting and embarassing, to say the least. Stumbling, tripping over my feet, veering to the side when I walk (all making me look like a drunken fool) and trying to be social talking to other parents, breathless because of the tight feeling around my chest and stuttering and stumbling over words. Not fun.
Feeling like a yoyo, bouncing back and forth. When I'm having symptoms or a bad day, I feel like pushing forward and getting answers is a must. Then, I have those moments of second guessing myself (even though I would totally trade my body in on a "new model" on any given day) and thinking maybe I just need to deal with it.
Taking it one day at a time. Laurie :-)