suggestions on Neurologist Exam, anything would be helpful

[vwick77]

I have had suspected MS for 6 years now with symptoms from numbness in hands, head, finger, toes to brief paralysis in my left leg that caused my knee to buckle and caught myself on a piece of furniture to prevent falling. Pressure behind eyes, and numerous bouts of Trigeminal Neuralgia, eye twitches during trigeminal neuralgia attacks along with shakiness and chills. No MRI has shown lesions as of now. I have been swaying into walls around corners and hitting them hard with my left arm and left shoulder.

Many episodes of described above to mention. In the meantime I have been DX with fibromyalgia, but this doesn't seem to hold with doctors exam below. I have looked over records from a neurologist apt I had in Boston when I lived in the northeast and this is what he found on examination below, could some explain any below?

Reflexes were 3+ and symmetric in the upper and lower extremities. There were bilateral finger flexors and Hoffman's signs, more prominent on the right. There were 3 beats of left ankle clonus. Increased reflexes in upper and lower extremities.

I moved to Arizona this past July and waiting on insurance to see a doctor but I feel lost and so concerned, any advise would be awesome!

Thanks for your time!

[anon07072023]

I, also,don't understand how one can see it and another one can't see it.  The same thing happened with a fairly recent ct scan. One radiologist saw my ovary and noted that it was heterogeneous.  Another radiologist at the Mayo Clinic reviewed it for a second opinion looking for cancerous tumors in my abdomen and other areas (but that's another story) and they noted that my right ovary wasn't seen. WTH?  

It does seem like in certain parts of the country there isn't enough neurologists and there isn't enough good neurologists.  My first neuro took me almost 4 months to get in to see him for the first time - and he's just a regular MS specialist - not someone that's nationally renowned or anything .  

[vwick77]

Kelly97

That is exactly why I want a 3t and also to make sure nothing has been missed in the past!  I don't understand how one person sees clearly something and another doesn't, confuses me!  This is our health and our future and should be taken very seriously.  That Doctor that doesn't want to look at your scan needs to be gone!  I also think now a days these doctors are so overly booked with patients that there isn't that real 100% focus on patients anymore :( Our health is the result of that!  Not that there is a cure for MS but the earliest treatment the better and better quality of life!!!

Good luck to you!!!

[anon07072023]

Yeah, my first neuro said that I had transverse myelitis (just a single spinal lesion).  However, my symptoms continued, in fact, they increased. About a year and a half later, I switched to an MS specialist at a University. He said the radiologist missed 6 lesions and 3 T1 black holes in my brain, and an additional spinal lesion in my c-spine, besides my t-spine that was initially found.

My new neuro refuses to look at any of my MRI cds and just goes off of the radiology report (I specifically asked her to and she told me there's no way that she would do it, because there's too many pics to look thru), which again says normal brain MRI. I took screenshots and brought them in to her from the CD from where the other neuro showed me where they were and she acknowleged that the radiologist again missed some.

I'd like to get a 3T MRI on my spine because the radiology report is saying no lesions and so does she, yet I CAN SEE THEM. I know for sure if I get a 3T, they would stand out more and probably show more than the ones that I'm seeing.

Good luck!

[vwick77]

Thank you for that info, I am gonna check that out!

You know on one of my MRI Radiology reports they stated it looked like some degenerative disease was thought to be happening.  This was brought to one doctors attention by me and she wrote it off and said that is nothing (exact words) !  I still have thought of that and it continues to bother me to this day!  I don't know who to trust doing their job and if things have been overlooked somewhere, hey were only human, right!

[grandmalaurie59]

To answer your question...."what is an MS protocol MRI".....look to the right of your screen.  See where it says "Most Viewed Health Pages"....go to the bottom of that 'box' and click on "See all Health Pages ....scroll down until you find "MRI Protocol for the Diagnosis and Follow-up of MS" ....that Health page will explain it all.

All the health pages are a great resource to go to in answering some of the questions you might have.

My current neuro and MS specialist viewed my MRI with me. They pointed out my lesions and explained what symptoms they might cause ect...

All my docs and neuro's in the past never viewed my MRI scans with me....either I was told over the phone by the receptionist everything was normal. OR when I went back for the results appointment...the neuro would just tell me all was normal. and maybe read a small part of the radiology report.

Now, I have learned, it is VERY important to have your neuro look over your scans him/herself and with you present.

Honestly before this past Sept. I just trusted the "reports" as being 100% accurate. I have since learned these "mistakes" are very common in reports..... (the radiologist missing things) Using myself as ONE example!

Laurie :)

[vwick77]

amazing isn't it Minnie !  Sorry you went through a rough one also :(

Hope you find your answers real soon!

[LilMinnie]

Oh wow, I definitely understand about the messed up LP! I have one done on December 7th and now they can't find the csf results! Very disheartened to say the least.

Luckily I do have a really good neurologist and he is working with me to find outwwhat's going on with me.

Hang in there. I know it's tough.

Hugs, Minnie

[vwick77]

Laurie first thank u for your time and responding!  

I am so sorry you had to go through such a ordeal!  It def is a long road and very hard when you can't treat something that could be damaging your nervous system.  I have had so many different episodes that if one thing shows up I know a DX would be there!  The thing I'm def concerned about is the MRI imaging that I had in the past that wasn't done on the newest more sensitive MRI machines, I called the mayo clinic here in Arizona and waiting on a response, hard because I currently don't have insurance, so waiting to see what they could do for me.  

What is the MS protocol ??? Never heard of that so I'm not sure, and also I am unaware if the neurologist looked at the imaging himself, he never did with me.  I'm getting my records from my latest test and images and exams from a MS specialist in Boston, he was the one that found the clonus and Hoffman's on exam, interested to see what those test show.  I have every other test results and all my records!  I have been on top of that.  Funny how my doctor that DX fibromyalgia also stated that what symptoms I have show more in the nervous system.  He has made a few comments to me like that without being able to say to much at that point.

I also did have a lumbar puncture 6 years ago but it was a complete botch!! Horribly done by a intern and in my records it stated red blood cells found in fluid (which doctors stated was just from the dramatic puncture) and it said that it didn't look like obliqual bands were sent !!! Sorry I know I spelled that wrong hahah but yup looks like that LP was to messed up nothing in records much on it.

[grandmalaurie59]

to continue...my computer posted before I was done!

Cervical MRI showed spinal cord compression due to 2 disc/bone spurs pressing on my spinal cord....so I had to follow up with a neuro...

LONG story short.....my brain MRI WASN'T normal! Many more tests later I was sent to an MS specialist who also looked at my 1993 "normal" MRI and saw lesions back then....in my brainstem...my brain was clear....

Sept brain MRI was reported normal, but again, when my neuro, MS specialist and a neuroradiologist looked at it they all said the same thing...brainstem lesions...demyelinating disease....brain still clear...BUT they said my brain MRI wasn't done to MS protocol.

My questions to you are....did you have a MS brain MRI done by MS protocol? Did your neuro look at your MRI himself? Have you had an LP done? Do you have copies of ALL your test results and a CD/films of your MRI of your brain? If not get them! Keep them for yourself.

As you probably have seen not many of us get an instant dx of MS or anything for that matter....so it is very important to have copies of all test results and images for the future....just in case you need it!!

Unfortunately for me....because of the fibro dx.....all doctors over the years loved to use that dx as an easy out for them when they couldn't QUICKLY/EASILY figure out what was wrong with me.

Even my Rheumatologist dismissed my attack..(he wouldn't even examine me) after 20 years I guess he just figured is was just a "fibromyalgia" symptom/symptoms. I ended up going to a Orthopedic ...who sent me to a neurologist...even with the spinal cord compression, he said my symptoms were too severe and my exam pointed to more than just my "neck".

I hope you will not have to go for long without finding out what is causing your symptoms....don't be afraid to get 2nd, 3rd, ect opinions!

Good luck and God Bless,

Laurie  :)

[grandmalaurie59]

Hi,

I am so sorry to hear you are going through all this!

I first started having symptoms in 1993 when I was about your age. I had almost the same Neuro findings, except for the ankle clonus...I also had balance problems too.

Anyway...after much testing and brain and neck MRI....which was told to me to be normal....any many doctors later....I was dx with severe fibromyalgia because of the neuro symptoms by a Rheumatologist.

At the time my cervical MRI showed no compression in my neck even though I had hoffmans sign....(NOW I DO have spinal cord compression in my neck and hoffmans sign is still there)

Over the years, I did have "attacks"....went to the doctor....dr said MS...had brain mri....normal....bye bye...back to Rheumatologist.

Then this past Sept. Another attack.. put in hospital...dr said MS or stroke...(when you get older stroke gets in the picture) .....many tests...brain MRI...said to be normal...cervical MRI.... BUT had to follow up with a neuro....

[vwick77]

Thank u twopack!

Not useless information at all !  I appreciate your time!

I'm gonna look up that place and take a look :)

From where I am in Phoenix , Scottsdale is only about a half hour from  me, everything is in great driving distance from here so I'm thankful :)

[twopack]

I'm sorry you have been living under this cloud of uncertainty for so long.  What you describe isn't a terribly unusual scenario when looking at neurological diagnoses but that doesn't make getting on with life any easier when you're the one attempting to endure patiently.

As for symptoms - they are hard to interpret and then convert into a diagnosis.  Single symptoms aren't usually as helpful as your presentation of history, physical exam, and test results as a whole.  MS causes a wide variety of symptoms because as it destroys myelin and nerve axons it alters nerve conduction in more than one way.


Some time back, one of our members was confined to a wheelchair but still having a very difficult time convincing a physician to push toward a proper diagnosis.  One doctor did treat her spasticity aggressively but soon after that started her family moved to Arizona.  

She was referred to the Barrow Neurological Institute in Phoenix.  If I recall correctly, she was familiar with Barrow from when she had lived in AZ years before.  She reported to us that unraveling her diagnosis was still difficult but her neuro and NP at Barrow were caring and committed.  While they tested for diagnosis they worked on pain control on an outpatient basis and then arranged a stay at an acute rehabilitation hospital to improve her movement and function.  She found solutions for problems she never realized might be treatable.

Barrow doctors eventually diagnosed her with something other than MS.  Last I heard they were helping her find some resources to convert her house to a 'user friendly' state so she and her care-giver mother could continue to manage her care at home.  Unfortunately we haven't heard from her in quite some time.  Otherwise she would no doubt show up and give you more specifics.  

I apologize if I've given you unnecessary information overload.  Really just wanted to throw in here that Barrow's has a reputation every bit as good as Mayo's - maybe even better in the minds of some.  It might be worth taking a look at what they have to offer before you settle on the Mayo.  I'm not a geography geek but I think Scottsdale to Phoenix is a manageable distance?

Welcome to our community vwick.  It's always good to be a new silhouette.  lol

[vwick77]

Thank u for your comment Kelly!

I did have MRI a while back, nothing recent within 3 years, no leasions were detected.  My Rheumotologist was concerned because many symptoms I have don't mimic fibro such as the paralysis in my leg.  He did mention that now a history is being established so I may get answers down the road, they said sometimes it takes a period of time to show up and develope history.  

Asymmetry or abnormal reflexes can also be a sign of neurological damage.
No spinal compression was ever detected in MRI's

I contacted the MS Center at the Mayo Clinic in Scottsdale, I hope to hear back today!

[anon07072023]

I think asymetrical reflexes are what they typically look for to suggest an abnormality.  And the numbness & tingling & Hoffman's sign could be related to some sort of spinal compression.

Do they ever do any type of spinal MRIs on you?  My sister-in-law and my aunt both have fibro. They have all sorts of symptoms.  Then again, I kind of think of fibro as IBS - a go to disease/disorder when they can't figure it out.  

Maybe just make sure you are able to get in to see a doctor that specializes in MS now that you're in AZ and they can lead you in the right direction.

Good luck,
Kelly