Aa
Disgusted!
Some of you may remember me from a few months ago. I posted about taking some time off from my diagnostic journey because it was becoming increasingly frustrating. I was on my third neurologist and was getting nowhere fast. That was back in October and my fatigue has lifted so I decided to get back on the horse and look for answers as I've had some new symptoms. I saw the neurologist today and went prepared with my list of symptoms, new and old:
New symptoms-
-Stabbing pain up rear end
-Buzzing in big toe (left foot)
-Scratching thorn sensation between big toe and second toe, and top of foot (left foot)
-Bee sting sensation on left knee
-Mid back pain
-Bowel issues (only during the night)
-Simultaneous pains in different spots on body (i.e. stinging pain in upper thigh and shoulder blade at exactly the same moment)
-goosebump type feeling on back of left leg but no actual goosebumps
Continuing symptoms-
-Tingling in left cheek
-Tingling in left foot
-Painful cramping in 4th left toe. Also moves by itself sometimes
-Jerking left leg movements during sleep, and occasionally during the day (This neuro previously diagnosed me with Periodic Limb Movement Disorder of Sleep)
Symptoms that have gone-
-Bee sting sensations on lower legs
-Locked jaw
-Fatigue
-Shooting pain in left hip and leg
-Shooting pain up back of head into back of eye
-Shooting pain in cheekbone and jaw
I handed him my list, he looks up and says "none of your symptoms sound particularly neurological to me". To which I replied "Isn't PLMD neurological?". Doctor- "Ummmm……yes…….well…..yes, it is……..but none of your other symptoms are. And none of your tests point towards anything neurological".
That's weird, because last time I checked, I had two brain lesions, one of which enhanced with gadolinium. I also had a normal nerve conduction study and a normal lumbar MRI. He had previously blamed all of my symptoms on my lumbar spine. He refuses to do MRI of T and C spine. He told me that I was just going to have to live with my symptoms and there was nothing more he could do for me, but that he could refer me for a second opinion. I said no thanks and walked out of the exam room and left.
I'm so done with neurologists! I don't know what to do now
Thanks for listening
Jess
Best Answer
JJ - or know his a$$ from an a$$.
Move forward Jesse.
Take the break you need before you soldier on. Many have been through your path, many have cried (including myself).
Time has a way of healing the wounds that the medical idiots with a license afflicted upon us.
Move forward Jesse.
Take the break you need before you soldier on. Many have been through your path, many have cried (including myself).
Time has a way of healing the wounds that the medical idiots with a license afflicted upon us.
PeninaD- That's difficult for anyone to go through, especially someone so young. I hope your daughter is doing well.
Guitar_grrrl- I thought an enhancing lesion was a big deal but the neuro said mine didn't "enhance enough to be MS". He said they have to be "very bright"
Lisa- I'm still torn as to whether I will pursue anymore doctor visits at this time. I cried all the way home from the last appointment. If another Dr. treats me like that again, I think I might lose my marbles. My sweet 18-year-old daughter has had to listen to me complain about all of this. She said it makes her feel like going to school and becoming a MS specialist, a good one, so she can diagnose me! I told her that would be great because it will probably take me that long to get a diagnosis anyway ;)
Karry- I did read the "lies my neuro told me". It was entertaining :) And it does help to know I'm not the only one being mistreated by doctors.
Guitar_grrrl- I thought an enhancing lesion was a big deal but the neuro said mine didn't "enhance enough to be MS". He said they have to be "very bright"
Lisa- I'm still torn as to whether I will pursue anymore doctor visits at this time. I cried all the way home from the last appointment. If another Dr. treats me like that again, I think I might lose my marbles. My sweet 18-year-old daughter has had to listen to me complain about all of this. She said it makes her feel like going to school and becoming a MS specialist, a good one, so she can diagnose me! I told her that would be great because it will probably take me that long to get a diagnosis anyway ;)
Karry- I did read the "lies my neuro told me". It was entertaining :) And it does help to know I'm not the only one being mistreated by doctors.
Toss that one on the bad heap & move on to the next.
I'm not sure if you've been told this or not but there is a health page called "the lies my Neuro told me" that will help you see that you are not alone with your experience. The health pages are located at the bottom of the screen.
I found this quite motivating & funny when I had a bad experience. I hope it helps you too.
Karry.
I'm not sure if you've been told this or not but there is a health page called "the lies my Neuro told me" that will help you see that you are not alone with your experience. The health pages are located at the bottom of the screen.
I found this quite motivating & funny when I had a bad experience. I hope it helps you too.
Karry.
OMG, the proctalgia fugax was probably the first sign my daughter had (at the age of 14/15, 3 years before her MS diagnosis was finally made. For her, it felt like an ice-pick.
Thank you everybody!
Alex- Your story inspires me and you are such a strong person! I think I would have cracked by now if I had been through all that.
Kyle- I would be more than happy to travel to Seattle. My worry is that I will have to pay out of pocket and that I will have the same results that I have had thus far with doctors. I really don't want to hand over a bunch of money to just be dismissed again. I am going to call my insurance company today though and see what I can and can't do as far as needing referrals from my primary.
C- I'm glad your husband has you on his side :) Sounds like you know how to get things done!
Lisa- My rectal pain has been going on for a couple of months I think. It has only woken me from sleep two times, both in the morning. Every other time has been during the day. The pain is fleeting but very intense and seems to come and go over a period of days and then disappears for awhile. I have only experienced the "have to go constantly" feeling you describe a few times. But I did have the feeling like everything was going to "fall out" one time when I was actually on the potty (sorry). The pain was excruciating and didn't stop until I stood up. The other bowel issues I have are only at night and it is like water and bubbles rushing through my intestines. Its loud and wakes me up. It stops when I get up. Weird I know.....
JJ- Yes, unfortunately I did go back to Dr Liar Liar Pants on Fire ;) I am notorious for giving people too many chances (just ask my ex-husband) ;) But I won't be going back to him again! He's awful
Alex- Your story inspires me and you are such a strong person! I think I would have cracked by now if I had been through all that.
Kyle- I would be more than happy to travel to Seattle. My worry is that I will have to pay out of pocket and that I will have the same results that I have had thus far with doctors. I really don't want to hand over a bunch of money to just be dismissed again. I am going to call my insurance company today though and see what I can and can't do as far as needing referrals from my primary.
C- I'm glad your husband has you on his side :) Sounds like you know how to get things done!
Lisa- My rectal pain has been going on for a couple of months I think. It has only woken me from sleep two times, both in the morning. Every other time has been during the day. The pain is fleeting but very intense and seems to come and go over a period of days and then disappears for awhile. I have only experienced the "have to go constantly" feeling you describe a few times. But I did have the feeling like everything was going to "fall out" one time when I was actually on the potty (sorry). The pain was excruciating and didn't stop until I stood up. The other bowel issues I have are only at night and it is like water and bubbles rushing through my intestines. Its loud and wakes me up. It stops when I get up. Weird I know.....
JJ- Yes, unfortunately I did go back to Dr Liar Liar Pants on Fire ;) I am notorious for giving people too many chances (just ask my ex-husband) ;) But I won't be going back to him again! He's awful
COMMUNITY LEADER
OMG Jess, tell me you didn't go back and see the "liar liar pants on fire" neuro again, cause after what he'd said before, he's not likely to change his erroneous opinions, it probably wouldn't of mattered if you had a neon sign floating over your head or fluorescent arrows pointing out the problem, his mindset is not going to get any better, he's already an over cooked turkey!
What to do............
Take a step back for a moment, note that there are good and bad in any profession and regardless of if he did have the right answers to what's causing your symptoms. His attitude just su_cks, so unless he get's a personality transplant before you had to see him again.......it probably would not work out in the long term and you'd be looking to replace him anyway.
He's right, "there is nothing more he could do for me" (lol you) and that's good to know, because that attitude is a waste of your time, money, emotional and physical energy, that all would be better spent finding the neuro, that you can trust and feel more comfortable with!
Take as long a break from the dx process as YOU think you need, in the mean time see if you can find the right neuro for you. It might help to see your GP and ask "if it's not neurological, what else could it be?" and if there are 'other possibilities' not yet ruled in or out, you can get that worked out and have the better fitting neuro there if you still don't have the answer to what is causing these symptoms.
Cheers...........JJ
What to do............
Take a step back for a moment, note that there are good and bad in any profession and regardless of if he did have the right answers to what's causing your symptoms. His attitude just su_cks, so unless he get's a personality transplant before you had to see him again.......it probably would not work out in the long term and you'd be looking to replace him anyway.
He's right, "there is nothing more he could do for me" (lol you) and that's good to know, because that attitude is a waste of your time, money, emotional and physical energy, that all would be better spent finding the neuro, that you can trust and feel more comfortable with!
Take as long a break from the dx process as YOU think you need, in the mean time see if you can find the right neuro for you. It might help to see your GP and ask "if it's not neurological, what else could it be?" and if there are 'other possibilities' not yet ruled in or out, you can get that worked out and have the better fitting neuro there if you still don't have the answer to what is causing these symptoms.
Cheers...........JJ
Hi there!
Boy some of us can totally relate to your "journey" and multiple neurologists. I was up to 5!!
To me your rectal spasms could possibly be from proctalgia fugax (people do complain of night time spasms that wake them from sleep) but can happen during day or levator ani syndrome which is another variant of the aforementioned.
Although I am not a doctor and I can not diagnose whatsoever, perhaps a visit to the Gastroenterologist is in order? Have you had the spasms in your rectum for awhile now?
I suffer from rectal spasms during day and it constantly feels like I have to "go" (is there any other way to express that nicely? LOL) So this feeling of the verge of the "big" spasm is going on all day long...waiting for that painful moment to happen (feels like I'm birthing my uterus and every other neighboring organ out of my rear!
I just feel your pain girly girl. (rectally and Neuro doctors!)
Ditto on what Alex said. Dont give up ...Keep your course. It's your body...you know what's normal and what is not....Not one person on this earth can tell you otherwise.
Onward for you.
Let us know.
Lisa
Boy some of us can totally relate to your "journey" and multiple neurologists. I was up to 5!!
To me your rectal spasms could possibly be from proctalgia fugax (people do complain of night time spasms that wake them from sleep) but can happen during day or levator ani syndrome which is another variant of the aforementioned.
Although I am not a doctor and I can not diagnose whatsoever, perhaps a visit to the Gastroenterologist is in order? Have you had the spasms in your rectum for awhile now?
I suffer from rectal spasms during day and it constantly feels like I have to "go" (is there any other way to express that nicely? LOL) So this feeling of the verge of the "big" spasm is going on all day long...waiting for that painful moment to happen (feels like I'm birthing my uterus and every other neighboring organ out of my rear!
I just feel your pain girly girl. (rectally and Neuro doctors!)
Ditto on what Alex said. Dont give up ...Keep your course. It's your body...you know what's normal and what is not....Not one person on this earth can tell you otherwise.
Onward for you.
Let us know.
Lisa
jessie438,
I can only add I'm sorry you're riding the "merry go round" of "something is wrong and I need help!".
And I agree with HVAC and Kyle, don't give up! My hubby and I both are "medical anomalies" to put it nicely. Hubby is a quite guy, just goes with the flow...I am NOT! That being said, someone had to keep pushing on...not only to find out why we both were going "down the tanker"; but to try and get help for it. Hard to fight unless you know what you're up against.
So, as HVAC said, get your frustrations out safely, and then keep on going. Repeat as needed...
HVAC,
I still marvel at your strength, I really do... I also had a much needed laugh when I read about your "Hell no I'm not all right" t-shirt... I need one or more of those...assorted colors.
Regards all,
C
I can only add I'm sorry you're riding the "merry go round" of "something is wrong and I need help!".
And I agree with HVAC and Kyle, don't give up! My hubby and I both are "medical anomalies" to put it nicely. Hubby is a quite guy, just goes with the flow...I am NOT! That being said, someone had to keep pushing on...not only to find out why we both were going "down the tanker"; but to try and get help for it. Hard to fight unless you know what you're up against.
So, as HVAC said, get your frustrations out safely, and then keep on going. Repeat as needed...
HVAC,
I still marvel at your strength, I really do... I also had a much needed laugh when I read about your "Hell no I'm not all right" t-shirt... I need one or more of those...assorted colors.
Regards all,
C
You may have to travel. Can you get to Seattle? It looks like they have MS centers at Swedish and UW.
Kyle
Kyle
I was like that but I finally found a Neurologist who put it together. It was Neurologist 3 in two years who fired me. She sent me to a Neuro Opthamologist. I told her I was done with all Neurologist. She told me I had MS and had to go back. That is when I went to a MS Specialist it took another year but he diagnosed me. It took a positive LP before he would diagnose me with MS.
I am now in Cancer Treatment. I have to go every week and I hate it. Realistically I have to get over it because the treatment is keeping me alive.
I hate Doctors and hospitals. With MS and Cancer I live in them. I have to make the best of it. I write my frustrations out. I also walk my dog to get the physical frustration out.
Luckily no one can read my mind because I have some very sarcastic thoughts. I also have a Hell No I'm not all right T-shirt I where when I am particularly ticked off at my care.
I had my first MS attack in 1965 and I was diagnosed in 2009. I saw many Neurologists growing up but my parents never told me. I grew up hating doctors. I stayed away from all specialists for years.
It took 6 years to be diagnosed with Cancer and by then it was stage 4. I want to scream at somebody in a white coat.
Scream, throw something, do what ever then find another doctor one who will listen. They are out there they are just rare.
Alex
I am now in Cancer Treatment. I have to go every week and I hate it. Realistically I have to get over it because the treatment is keeping me alive.
I hate Doctors and hospitals. With MS and Cancer I live in them. I have to make the best of it. I write my frustrations out. I also walk my dog to get the physical frustration out.
Luckily no one can read my mind because I have some very sarcastic thoughts. I also have a Hell No I'm not all right T-shirt I where when I am particularly ticked off at my care.
I had my first MS attack in 1965 and I was diagnosed in 2009. I saw many Neurologists growing up but my parents never told me. I grew up hating doctors. I stayed away from all specialists for years.
It took 6 years to be diagnosed with Cancer and by then it was stage 4. I want to scream at somebody in a white coat.
Scream, throw something, do what ever then find another doctor one who will listen. They are out there they are just rare.
Alex
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I really only know of 2 possible explanations for bright MRI spots 1- a lesion where the blood brain barrier has been crossed, which indicates demyalination or 2 - it isn't a lesion but an unidentified bright object (UBO), which is an anomaly created by the MRI sequence.
With demyalinating lesions and Gad contrast, the one's that light up are younger and demyalination is still active, the ones that don't are older and no longer active. There is no level of brightness required, they either light up or they don't!
Unless he was saying though badly worded, that your bright spot is a glitch (UBO) and not a lesion, he was again talking porkie pies!
Cheers...........JJ
ps I would be running from this guy, he doesn't seem to know his a$$ from his elbow lol