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Old 08-16-2012, 09:09 PM   #1
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Feeling like I'm the Quack or the Doc I just saw is!

Hi All,

I'm going to make my very long story as short as possible in hopes that some of you bright individuals can help me more that the so-called Neuro did. I have been presenting with symptoms for over 10 years but have only had two neuro exams. One for after a roll over car wreck and one last week. However, I have seen my PCP on several occasions about the issues and he has referred me to an ENT which diagnosed Menier's in 2008 because of the vertigo and tunneling noises I was having. I don't remember much about that other than I had to get these tubey things down my ears and listen to noises along with an MRI of the neck and some other tests. In 2007 I saw my PCP for all of the same symptoms that I'm having now and he ordered an MRI of the brain and Spine at that time. Both MRI's came back normal except for issues with disc degeneration and bulging discs. I completely forgot about the MRI's when I went to the neuro last week and therefore we had no base line to work with. This neuro was an absolute jerk (putting it mildly). He was supposed to spend one hour with me and he spent 20 minutes. He fired off so many questions that I didn't have answers to and then became agitated with me for not knowing what he wanted. I had made a very extensive two page list of all of my symptoms for the last 10 years along with a time-line indicating when they started and stopped, if they stopped at all. I figured that would be enough. I'm certainly not going to bore you with all of them but I can assure you that almost every one points to MS.

I had my MRI yesterday and was given the report which indicated some abnormalities. I faxed the copy of my old reports along with the new one to my doctor today and this afternoon I received a message from his nurse that said my MRI is just fine and I should see an ENT for my vertigo. All I can think is that he read the report from five years ago because it was from the facility that he referred me to go to and he didn't pay attention to the date. I think he just saw the hospitals name on it and figured that was the one. Not sure, but this is all I could come up with. He had originally said that if we didn't find anything on the brain MRI we would move to the neck and spine. His nurses voice mail also told me that he said I didn't need to come back to his office again as it could just be fibromyalgia (it could be). What happened to moving on to the neck and spine?

Here are the results from my MRI from yesterday. From the "Impression".

1. Questionable very small subacute infarct versus artifact accounting for the questionable restricted diffusion in the left side of the pons. This is not substantiated on any other sequence. A follow-up study may be of benefit.

2. Elsewhere, a few small foci of T2 prolongation are seen in subcortical white matter tracts in the cerebral hemispheres. These are non specific foci that could be associated with chronic migraine headaches in the appropriate setting. Microvascular disease of other etiologies could also present in this fashion.


I, of course checked all of this out with the help of the www. and it seems to me that the Microvascular disease could be either mini-strokes or it could be MS. Why would this doc absolutely just disregard this information? I never once told him I had migraines, so why would he just ignore this. If I hadn't received this information I would have just assumed that everything was ok and I was just "imagining" symptoms as he thought. What are your thoughts on my MRI results?

This was from the "Findings" area. I'm only listing the two areas that seemed to notate a problem

1. Supratentorial brain demonstrates a few very small foci of T2 prolongation in subcortical white matter tracts.

2. Gradient imates demonstrate no parenchymal hemmorrhage. Coronal FLAIR images likewise demostrate a few small foci of T2 prolongaton in subcortical white matter.

BTW
I have friends and customers that have MS and Parkinson's. I have three separate incidences of pretty much the same exact experience.

Have another neuro appt at the end of the month.

Last edited by snoopy7645; 08-16-2012 at 10:01 PM. Reason: adding info

 
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Old 08-17-2012, 01:56 AM   #2
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Re: Feeling like I'm the Quack or the Doc I just saw is!

Hi there. Dont panic.
To be honest, nothing in your MRI suggests MS. I know thats not what you want to hear- but its good news!
You may want to switch Neuros or take your films and reports to another one for a second opinion. Was this Neuro an MS specialist or just a regular Neuro? If he wasnt a MS specialist- he isnt qualified to look at a set of films and read them.....MORE importantly- who DID read them? A radiologist who isnt a neurological specialist, may have missed something.....no decent MS specialist reads reports- only films.

However, what the MRI does say, is that there are areas of non specific foci- this can be from age, from migranes- or from prior head trauma. If it were MS related, it would be areas of demylination- thats not seen here. So, its quite possible that the MRI was read correctly.

I think that in this case you need to get a second opinion if only for your own peace of mind. BUT I still dont think you have MS to worry about...this is my non-medical opinion; however I have MS, and my MRI reads completely differently.

Try to relax. Your post suggests you are highly anxious over this and rightfully so- its YOUR body (or brain) and you have every right to be upset...but the bottom line is if you dont like the way you were treated by this Neurologist, find one who is better suited towards your needs, and has better bedside manner. In my experience- if you call back and ask to have this doctor return your call, you will probably feel better if you can ask him if he read ALL the reports you sent him and ask for his reasoning on why you dont need to return. Remember, he is seeing 50 patients a day- dont allow yourself to fall through the cracks and if you feel you need more info from him- youre going to have to ask for it.

Try to hang in there....relax and take things one day at a time . I would be looking for a second opinion if I were you.

Nikki
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Old 08-17-2012, 04:47 AM   #3
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Re: Feeling like I'm the Quack or the Doc I just saw is!

Welcome.

Areas of hyperintensity will light up in patients with Parkinson's, MS, et al. While the faxed results are fine, the actual images are more important because a radiologist read the report and not a neurologist.

There are specialists in neurology who deal with Parkinson's and those who deal with MS. If you start with a neurologist, you should understand what specialty they have. Due to your previous injuries from your automobile accident, a specialist can lay aside those potential symptoms to look for disease specific symptoms.

based upon that which you have written, more needs to be determined. If you have other symptoms, write them down in a journal. The neuro you saw who fired off rapid questions may have been deliberate in observing your response. You can take control by writing down your symptoms and information about those symptoms. Give a copy to the neuro and when the speak, answer at your speed, but with consideration to their patient volume.

You need not feel like a quack, you just need some answers. You have from now until the end of the month. Take the time to make a well organized list of symptoms without mentioning any diseases not looking up any symptoms about other diseases. Focus on you and what you have experienced. If needed, get someone to help you write them down. Make a copy for yourself and one for your doctor. When you see the doctor, go through your list. Also, before your visit, write down several questions you might have. When we get into the office we can often forget things- the list helps.

Again, Welcome. If you have more questions before your appointment, please feel free to ask. You are searching for answers; you deserve answers!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 08-17-2012, 06:37 AM   #4
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Re: Feeling like I'm the Quack or the Doc I just saw is!

Thanks so much for your thoughts. I'm actually ok with whatever a doc tells me because at least I know how to deal with my issues. First off, I actually live in the state that has not only the highest rate of MS in the US, but my geographical region of the state has the highest rate well. The neuro I saw was an MS specialist as well. I would like to thank both of you for pointing out that he does need to read my MRI and not just go off the report. He as well as the new doc (MS specialist too) I'm scheduled to see actually told me they just need the report. I would have just assumed this was traditional protocol and not known to make sure the neuro looked at them as well, so thank you!

I should probably elaborate a little more. After my car wreck and almost a year later I saw the first neurologist (1997), at that time he thought my symptoms were MS related. Of course, the MRI indicated otherwise. Throughout the years my PCP thought what I had was MS as well, but once again nothing on the MRI. Now with the new MRI showing SOMETHING, I had hope we would get to the bottom of this.

Unfortuantely, I'm now going to bore you with my symptoms I can deal with most of them but there are a few that have been super hard to ignore. For the last 5-6 months my arms have been burning so bad that I cannot hold the steering wheel at the end of the day. I thought I had a pinched nerve because it stopped for about 5 weeks and has been back since. My cognitive function has gotten so bad that I have to send clients to my voice mail so I can listen to who they are an look through my notes to jog my memory even though I may have just met with them the day before. It seems only my short term memory is currently affected. I cannot speak clearly and twist my words all of the time. Sometimes I flip words around and other times I take the first syllable off one word and put it on the next, taking the next words first syllable and put it on the first word. Makes me sound like a nut when speaking. I was even at a ER docs (client) house last week and she asked if I was ok because I kept doing that. Lastly, the symptom that is so difficult to live with is the recurring hypersensitivity in the back of my leg. It has been coming on for the last seven years. I feel like my leg went through a meat grinder and then you poured salt on the open wound. NOTHING can touch it without me wanting to cry. That lovely symptom started to only happen for about 24 hours at a time but now it sticks around for a few days. Here is the list I gave to the neuro......

10+ Years
• Bladder infections
• First black out feeling noticed in 1997 while driving, felt like I was sinking in chair and I could see black rising up.
• Shooting pain in heart, doc said too young for heart issues and dismissed it, happening since a teenager

Last 5-10 Years
• Extreme fatigue
• Hip pain (started in left hip, had cortisone shot and it didn't help except the first hour), Pain went away for about 9 months after hysterectomy but has since returned.
• Hip pain has now started in right side and is especially noticeable when driving
• Left leg feels like it has been through a meat grinder then salt poured on it. Hypersensitive to clothes or touch. Last for days at a time. Travels down leg and usually stops at the foot but sometimes will travel back up the left side of shin.
• Shooting pain in head, like stabbing

Last 1-5 Years
• Acid Reflux for the last two years
• Cold feet and hands but left foot can be super cold compared to right. Sometimes it feels cold inside but not on the outside.
• Echoing and pain in left ear, led to diagnosis of Meniers in right ear in 2008.
• Feeling as though I'm going to black out, happens 7-10 times a week, mainly while driving or on the computer
• Feels like I'm being bit by little bugs or stings. Mostly on legs and torso.
• Left ear has pain and sometimes sounds like it is open and noises are so loud they hurt my ear
• Left foot started to turn inward for about 3-4 weeks. Went away but I noticed it happening again a week ago.
• Left leg feels like a blood clot behind the knee, swollen feeling
• Loss of hearing in right ear, lower tones, Diagnosed with Meniers
• Muscle spasms/twitches, mainly on left leg but occurring everywhere
• Odd sensation in my brain, feels like waves
• Problems with heat, don't want to do anything outside on hot days as I hardly can move
• Racing heart when tired
• Restless Legs for about 6 months, completely gone now
• Shooting pains throughout my body but mainly in my head and vaginal area
• Tingling in arms and legs led to burning sensations
• Tingling or bugs crawling on the back of my neck
• Tinnitus
• Voice has started turning hoarse when tired.
• Walking in to walls or furniture

Past Year
• Arms and hands fall asleep while sleeping. Seems to be like the ulnar nerve
• Blurry Vision when waking on two occasions. Right (?) Eyeball was actually swollen and vision was blurry for about 3 hours, I went back to bed and it was fine along with eyeball when I woke up. 2nd time was about 1 month ago and it happened when I woke up and was there for about 45 minutes.
• Breathing difficulties at night while laying down, almost feels like I'm forgetting to breath, sometimes get a gurgling sound in my esophagus
• Burning in arms, shoulders, and hands (twice this year lasting for at least two months each, stopped for about five weeks)
• Complete loss for words on two occasions the most recent was end of May 2012
• Having a hard time picking up my feet to walk on 8-2-12
• Joint Pain in right index fingers and at times the elbows
• Left big toe is hard to bend, feels stiff
• Left foot started to turn inward for about 3-4 weeks. Went away but I noticed it happening again a week ago.
• Left leg feels like a blood clot behind the knee, swollen feeling
• Lost the hearing in my left ear for a few hours earlier this year.
• Memory loss-more short term than long term
• Muscle tightness in neck, shoulders, and arms. When waking my calves feel really tight for about the first two minutes of walking. I'm constantly stretching those muscles.
• Numbness between the large toe and left toe. Is there most of the time but then it goes away for a few days and comes back
• Numbness in hands on 8-2-12
• Pain in heels but mostly only noticed when laying down and knees are bent
• Right foot feels like it is soaking in warm water
• Slightly high WBC for three consecutive blood draws last year.
• Top of left ankle feels overly sensitive, arms, shoulders, and hands burning. Chest pain in left side, feels like pleurisy on 7-23-12
• Trouble putting sentences together at times
• Vibrations in crotch area on April 11 and June 15
• Vision seems to be worsening assuming due to age.


I assumed based on the above issues and the current MRI I would at least get some other tests to rule out something. I had been keeping a running list of things as they happened the last six months. Can someone please explain the vibration thing? That was an interesting symptom, lol.

Also a side note....I'm the type of person that will put energy into figuring out what is wrong with me when my symptoms are so bad that I can no longer deal with them. If I get blown off, then I wait for a couple more years to see someone again when I muster up enough energy to deal with it again. So I haven't been super active in trying to get to the bottom of this because I can deal with most of the pain and craziness I feel.

Thanks again for all of your words of wisdom!

Last edited by snoopy7645; 08-17-2012 at 06:57 AM.

 
Old 08-17-2012, 07:10 AM   #5
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Re: Feeling like I'm the Quack or the Doc I just saw is!

Thanks for that additional information. My neuro would never accept just a written report. She would accept a written report initially if it were written by another MS Specialist, but she would still want to see the MRI images. I think that this should be your case too. If not, I would have a difficult time to trust the veracity of my doctor.

In a run down of your symptoms, there are many and it is a good list. I can tell you that I share several of the same or similar symptoms which, for me, are caused by my MS.

From your list:
Last 5-10 Years
• Extreme fatigue
• Hip pain (started in left hip, had cortisone shot and it didn't help except the first hour), Pain went away for about 9 months after hysterectomy but has since returned.
• Hip pain has now started in right side and is especially noticeable when driving
• Left leg feels like it has been through a meat grinder then salt poured on it. Hypersensitive to clothes or touch. Last for days at a time. Travels down leg and usually stops at the foot but sometimes will travel back up the left side of shin.
• Shooting pain in head, like stabbing

I do not do meds but the aforementioned- I can relate to all of them.

The pain in your head- where is it located?

Further from your list:

Last 1-5 Years
• Cold feet and hands but left foot can be super cold compared to right. Sometimes it feels cold inside but not on the outside.
• Echoing and pain in left ear.
• Feels like I'm being bit by little bugs or stings. Mostly on legs and torso.
• Left ear has pain and sometimes sounds like it is open and noises are so loud they hurt my ear
• Left foot started to turn inward for about 3-4 weeks. Went away but I noticed it happening again a week ago.
• Muscle spasms/twitches, mainly on left leg but occurring everywhere
• Odd sensation in my brain, feels like waves
• Problems with heat, don't want to do anything outside on hot days as I hardly can move
• Racing heart when tired
• Shooting pains throughout my body
• Tingling in arms and legs led to burning sensations
• Tingling or bugs crawling on the back of my neck
• Tinnitus
• Voice has started turning hoarse when tired.
• Walking in to walls or furniture

I have kept those which are the same or similar. I experience pulsatile Tinnitus and there are some sounds I cannot stand. I wear a pair of shooter's ear protectors which are really great. I get those cold sensations mainly in the winter when the temperatures get to 52 F (11.11 c) or less. I will often wear gloves and a sock cap indoors because it is mainly my head and hands. If my feet feel that way, I may add 2-3 layers to my feet.

And as to your last year:

Past Year
• Arms and hands fall asleep while sleeping.
• Blurry Vision when waking on two occasions.
• Breathing difficulties at night while laying down, almost feels like I'm forgetting to breath, sometimes get a gurgling sound in my esophagus
• Burning in arms, shoulders, and hands (twice this year lasting for at least two months each, stopped for about five weeks)
• Complete loss for words on two occasions the most recent was end of May 2012
• Having a hard time picking up my feet to walk on 8-2-12
• Joint Pain in right index fingers and at times the elbows
• Left big toe is hard to bend, feels stiff
• Left foot started to turn inward for about 3-4 weeks. Went away but I noticed it happening again a week ago.
• Memory loss-more short term than long term
• Muscle tightness in neck, shoulders, and arms. When waking my calves feel really tight for about the first two minutes of walking. I'm constantly stretching those muscles.
• Numbness between the large toe and left toe. Is there most of the time but then it goes away for a few days and comes back
• Numbness in hands on 8-2-12
• Pain in heels but mostly only noticed when laying down and knees are bent
• Right foot feels like it is soaking in warm water
• Top of left ankle feels overly sensitive, arms, shoulders, and hands burning. Chest pain in left side, feels like pleurisy on 7-23-12
• Trouble putting sentences together at times
• Vision seems to be worsening assuming due to age.

Again, I can relate to similar symptoms. My vision problems (optic neuritis) last several days. As for resting in bed, I have found that I have less breathing difficulty if my upper body is elevated by at least 10-15 degrees. I have breathing problems and start coughing if I am flat.

The loss of words can be due to MS too (in addition to other possibilities). I have speech and memory difficulties which increase exponentially as I have mental exhaustion (brain fatigue). A long, solitary rest helps with this.

During the summer months I experience numb hands quite often. I will soak them in ice cold water and this seems to help me.

I could go on, but I did not want my reply to be too long. Now, many of your symptoms can be attributed to MS or an MS mimicry disease or physical problem. I would ask for a new MRI with and without contrast of your head through your T-spine. I would also ask for a VEP (visual evoked potential). I think that if you have an MS issue, these two tests would provide some information to justify further testing (my non-medical opinion!).

I will keep your needs in my prayers because you could certainly use some answers!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 08-17-2012, 07:25 AM   #6
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Re: Feeling like I'm the Quack or the Doc I just saw is!

Thanks MSJayhawk for your prompt replies. I figured some of my symptoms had to be shared by others. The head pain is typically above my ears but not as far forward as my temples. It happens on both sides. Sometimes I get electrical shocks through the frontal lobe as well. Those only last for a second however, the pain near my ear can be there for about 15 seconds.

I will take my list with me to the new neuro, however, if he doesn't want to see my MRI's then I'm going to search for someone that will.

I would just think with all of these symptoms that I would at least get someone to take me seriously. On presentation I look and act fine and that is why I think this doc sent me packing.

I will keep you posted on what happens.

Thanks again!

 
Old 08-17-2012, 07:37 AM   #7
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Re: Feeling like I'm the Quack or the Doc I just saw is!

When my pain happens in that area, I drink my Diet Dr. Pepper and the pain melts away. You might try your favorite caffeine and see if you find your own remedy. For pain further back on my head I use dark chocolate. When I have pain behind my eyes, I apply acupressure on my temple perpendicular to the pain. This pain is rarer nowadays and is caused by light sensitivity in my right eye for which I have found relief wearing a pair of polarized sunglasses indoors and outdoors.

I look forward to your updates!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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