What does someone with MS look Like?

[lindy3269]

I have been trying to figure out what is wrong with me for about 8 years. I have been tested for just about every kind of movement disorder under the sun as well as other conditions. I have had brain scans (and I know that these are many times inconclusive). I have had two nurses and 2 friends with MS tell me I need to be tested- with a lumbar puncture as that is the only conclusive way to rule in or out MS. I went to a new neurologist and though he is going to do the lumbar puncture made the statement to me that having MS is like having a broken nose - and that my body shows no outward sign of MS. I don't understand what this statement means.

Can someone explain to me what a person with MS looks Like?

I have about 12 signs of MS from the symptom list and I understand that these can also be from other things. I have been tested for about 27 diseases and even went thru psych testing. All results were normal, so I have asked 2 drs to test for MS and finally found one that will but thinks I am wrong. He is also doing other nerve studies in the round of tests.

[SNOOPY]

Hi lindy3269,

I went to a new neurologist and though he is going to do the lumbar puncture made the statement to me that having MS is like having a broken nose - and that my body shows no outward sign of MS. I don't understand what this statement means.

I have about 12 signs of MS from the symptom list

Symptoms are what you experience. Signs are what the Neurologist sees, usually observed during an exam. If there is no abnormal finding during your exam there is no sign of a Neurological problem.

I can only assume your Neurological exam was normal and the reason your Neurologist said your body shows no outward sign of MS.

[lindy3269]

Hi lindy3269,


Symptoms are what you experience. Signs are what the Neurologist sees, usually observed during an exam. If there is no abnormal finding during your exam there is no sign of a Neurological problem.

I can only assume your Neurological exam was normal and the reason your Neurologist said your body shows no outward sign of MS.

Actually he made this statement BEFORE he even started the exam. Before I left he decided to do about 7 new neuro test that either haven't been ordered before or haven't been ordered in years. So I still don't understand what signs he thinks I should show or not show and am hoping someone can clue me in. Thank you for any input. I am just so frustrated trying to get answers.

[pennstater]

A neuro making that statement seems to be a red flag. There is no one MS look, as you suspect. Does this neuro treat MS or a specialist?

It almost sounds like he was looking for someone with lower body issues, where using assistive device. Or someone with visual or balance issues. However, even if this is present, there could be so many other causes.

Additionally, some people like me have cognitive and fatigue as primary disabling symptoms. This isn't visible. I also have numbness, pain, L'hermites, intermittent vertigo. Most of time, I have just "invisible" presentation. But my brain and cervical spine have plenty of lesions and neuro exam abnormal.

Scary, as this neuro would have dismissed me. And thankfully, while progressing, once on DMD treatment, the rate slowed down.

Ask the neuro what an MS patient, before exam looks like. The answered may send you running. That being said, I am glad he took you serious and running other tests to find or rule out other conditions. It also seems when a patient brings up a diagnosis first, some docs assume you are self diagnosing via Dr. Google, especially if tests to date don't support it. Focus on symptoms in your discussions until you get an answer.

Good luck.

[SNOOPY]

Hello lindy3269,

Why your Dr. said what he did is something you need to ask him. All anyone here can do is make assumptions.

The diagnosis of MS (McDonald Criteria) is based on medical history, neurological exam, testing and ruling out many other causes for a person's symptoms. There is no symptom unique to MS and no single test, by it's self, which can give a definite diagnosis of Multiple Sclerosis.

An abnormal Neurological exam as well as positive test results, which point to MS as a possible cause, are considered "signs." In reading your post you have not had any tests, at this point, which indicate MS as a possibility. If your Neurological exam is normal that will make MS less of a possibility. There is not a single person who has MS and who can completely pass a Neurological exam.

I have had two nurses and 2 friends with MS tell me I need to be tested- with a lumbar puncture as that is the only conclusive way to rule in or out MS

Unfortunately, you have been given bad information A Lumbar Puncture (LP) is no conclusive for Multiple Sclerosis as this test is used for other conditions as well. There are those with MS who either had a negative LP or didn't even have a LP as part of the diagnostic process. Of those with a definite diagnosis of MS and had a LP, 85% had positive LPs (o-bands).

Information about a LP and what the results can mean:
http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

What is looked for in the case of MS (CSF oligoclonal banding):
http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

Information about diagnosing Multiple Sclerosis:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

Other causes that need to be ruled out:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

[Thinkimjob]

We all look different. I look like a bit an extra from the Walking Dead, just a bit prettier.

Still got my teeth, and no huge bite marks, but have to be honest I think the shambling Zombies walk way better than me.

[lindy3269]

neuro testing

Hello lindy3269,

Why your Dr. said what he did is something you need to ask him. All anyone here can do is make assumptions.

The diagnosis of MS (McDonald Criteria) is based on medical history, neurological exam, testing and ruling out many other causes for a person's symptoms. There is no symptom unique to MS and no single test, by it's self, which can give a definite diagnosis of Multiple Sclerosis.

An abnormal Neurological exam as well as positive test results, which point to MS as a possible cause, are considered "signs." In reading your post you have not had any tests, at this point, which indicate MS as a possibility. If your Neurological exam is normal that will make MS less of a possibility. There is not a single person who has MS and who can completely pass a Neurological exam.



Unfortunately, you have been given bad information A Lumbar Puncture (LP) is no conclusive for Multiple Sclerosis as this test is used for other conditions as well. There are those with MS who either had a negative LP or didn't even have a LP as part of the diagnostic process. Of those with a definite diagnosis of MS and had a LP, 85% had positive LPs (o-bands).

Information about a LP and what the results can mean:
http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

What is looked for in the case of MS (CSF oligoclonal banding):
http://www.nlm.nih.gov/medlineplus/e...cle/003631.htm

Information about diagnosing Multiple Sclerosis:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS

Other causes that need to be ruled out:
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

though I have had lots of testing (about 27 blood test-we have ruled out a lot of conditons), the physch testing (gave a good baseline they said for when I get older- it was normal) the only neuro tests I can remember them giving me 'til now is MRIs. Most of the Neuros so far have had me walk down the hall and then say- nope your walk is ok. (yeah for about 5 minutes and your looking at me). (I have a lot of spasms which are triggered by heat and stress at random times). Now however I am slated to have a nerve study, EMG, VEP, BAER (not sure what some are but am hopeful), a new MRI. The first MRI of the brain only showed a couple lesions so they wrote those off originally. Most of my spinal symptoms (at least to me) seem to be in my neck and lower spine. so now he is going to look at those.

Thank you for the resources, I will check them out. I am hopeful even with his comment, that he has agreed to proceed with additional testing to determine if not MS what I do have.

[lindy3269]

Neuro

A neuro making that statement seems to be a red flag. There is no one MS look, as you suspect. Does this neuro treat MS or a specialist?

It almost sounds like he was looking for someone with lower body issues, where using assistive device. Or someone with visual or balance issues. However, even if this is present, there could be so many other causes.

Additionally, some people like me have cognitive and fatigue as primary disabling symptoms. This isn't visible. I also have numbness, pain, L'hermites, intermittent vertigo. Most of time, I have just "invisible" presentation. But my brain and cervical spine have plenty of lesions and neuro exam abnormal.

Scary, as this neuro would have dismissed me. And thankfully, while progressing, once on DMD treatment, the rate slowed down.

Ask the neuro what an MS patient, before exam looks like. The answered may send you running. That being said, I am glad he took you serious and running other tests to find or rule out other conditions. It also seems when a patient brings up a diagnosis first, some docs assume you are self diagnosing via Dr. Google, especially if tests to date don't support it. Focus on symptoms in your discussions until you get an answer.

Good luck.

I explained to him, after his statement, a lot of what I have been through with the other Neuros and what testing has been done, meds tried and what has been eliminated from the list of possibilities and how long we have been trying to get a diagnosis. I also explained to him, I am not there for meds- I want a diagnosis and before I take any pills of any kind then I have to know the why behind the meds as well as side effects, how long I need to be on them, etc. I explained to him, I don't like taking meds of any kind for any reason if I can find an alternative. That may be why he decided to put aside what he said prior to the exam-that and the fact he found some things during the exam that bothered him so decided we needed to do some additional testing (yeah) . As far as his specialty - I found several people on Dr review sites (and MS sites) who said he was awesome with their MS diagnosis so that is why I chose to see him. His specialties are listed as MS, Migraines, Epilepsy and ALZ.

Thank you for your input. I so appreciate it. I have been trying to get a diagnosis of what is wrong with me for so long (at least 8 years) and the good news is they have eliminated a lot of things, but have not figured me out yet. (The only reason I even asked to be checked for MS is that 2 Nurses and 2 friends with MS have told me I need to be tested).

I think after we get these test done, I will ask him the question - what does someone with MS look like and why he said what he said PRIOR to my exam. With him actually doing test, not sure I want to rock the boat just yet.

Thanks again

[JerryD]

lindy,
It's nice that you have researched the interne to find a neurologist that treats MS patients. But in my experience, you should have a MS specialist, period. All that you have to do is call his office and ask, point blank, 'is Dr. so and so an MS specialist?" I strongly suggest that you get a consultation with a specialist. Good luck

[MSW1963]

Couldn't agree more about consulting a MS Specialist. A complete and thorough neuro exam should take more than an hour. The five minute variety of neuro exam is a good indication of your neuro's lack of MS experience. Particularly early in MS, a clinical exam plus your MRIs with and without contrast, everything else ruled out, will help get more conclusive answers for you.

Some neuros will ignore your inconslusive MRI results with lesions, unless there is indication of active inflammation at the time the MRI films are taken. You can be in remission for many years with MS progression, with stable MRIs=no new lesions. Best of Luck

[MSW1963]

Forgot....

What does someone with MS look like?

Early in RRMS you may 'look too good' to have MS according to the untrained eye, which may include friends, family, etc., and neuros who lack the diagnostic skills to make a proper diagnosis.

MS Specialist will: read the MRI films, and do not rely exclusively the written report; preform clinical exams of minimum 1hr; have the confidence to make a dx when everything else has been ruled out that would explain your sx's; evaluate MRIs with enhanced=new lesions or MRIs with old brain lesions; abnormal clinical exam.

The gold standard for a straight forward dx of MS dx is enhanced lesions appearing on MRIs with abnormal clinical exam, proper rule out of lesions and sx being attributable to anything else; abnormal clinical exam.

Older lesions on MRI films can be a bit trickier, but in the hands of a qualified MS specialist, a reliable dx can be made.

[Cat Mom]

I look like everyone else who doesn't have MS, I've had it for 9 years. Sometimes I use a cane but people ask how I hurt my leg. Good thing people can't see what's inside, how I feel is so different than how I look.
Jen

[pennstater]

MSW1963 makes a great point about reading the MRIs and not relying on the report.

My MRIs have been mostly stable every year. At diagnosis, I had one enhancing lesion in cervical, old lesions as well, and lesions in brain. Original reports said cspine was demylenating, and the brain, consistent with demylenating disease due to location of clusters.

The latest, a different radiogist, always just say inconclusive on brain, but consistent with diagnosis of MS. I wonder what it would have said if no*diagnosis was made previously?

This is one of my red flags on new neuro. Old neuro retired, new one said he had report. I told him I had the discs, but he didn't need them. He then looked quickly, but it was to review with a med student and point out lesions. Thankfully, JerryD on this board gave me a great referall for a specialist. This doc doesn't just want my latest MRIs, he wants all 9years, along with the 6 eye OCTs, and my medical files. He sounds like very thorough neuro, which is what you want.

I do hope you get answers. Keep pushing until you do. While MS is not a diagnosis you want, if you do have it, it is a diagnosis you need. Good luck.

[lindy3269]

thank you

MSW1963 makes a great point about reading the MRIs and not relying on the report.

My MRIs have been mostly stable every year. At diagnosis, I had one enhancing lesion in cervical, old lesions as well, and lesions in brain. Original reports said cspine was demylenating, and the brain, consistent with demylenating disease due to location of clusters.

The latest, a different radiogist, always just say inconclusive on brain, but consistent with diagnosis of MS. I wonder what it would have said if no*diagnosis was made previously?

This is one of my red flags on new neuro. Old neuro retired, new one said he had report. I told him I had the discs, but he didn't need them. He then looked quickly, but it was to review with a med student and point out lesions. Thankfully, JerryD on this board gave me a great referall for a specialist. This doc doesn't just want my latest MRIs, he wants all 9years, along with the 6 eye OCTs, and my medical files. He sounds like very thorough neuro, which is what you want.

I do hope you get answers. Keep pushing until you do. While MS is not a diagnosis you want, if you do have it, it is a diagnosis you need. Good luck.

Thank you Kathy,

I am hoping that with these additional testing that they are doing over this last month and next will get some answers. If not I will keep searching. Like you said, I don't want MS but if I do have it I NEED to know that so I know what I need to do about treating. It seems that every Neuro I go to I look "to good" to have anything" until you spend more than 10 minutes with me then people are like, "Can't the doctors figure out what is wrong with you?" I just turn and stare and look at them like I really just did not hear the utter nonsense that just left their mouth.

Thanks for the advice

[22cyclist]

What does MS look like?: purely on its face MSers at some point in their disease tend to have a neurological look about them, meaning a 1,000 yard stare, frozen face or mask face like features, nystagmus. I am SPMS have had it for 11 years, and this is what I look like, and most of the people in the infusion center look like that get Tysabri. Our infusion clinic is a mish mash of infusion drugs but I can pick out the MSers by the way they look. Limbo landers/newly diagnosed do not yet have this look. Unless you have had the disease for years before getting diagnosis. I just wanted you to know that longer standing MSers do have a "look". Plus, I am in a wheelchair.

There are specific reflexes that they look for when testing for MS like Babinski signs, that look for CNS damage; I think you said you were going for a BAER, and VEP. The BAER measures your brainstem waves in what they call latencies. If yours are shorter than normal you have a positive result and may have a brain stem lesion that has not shown up. The VEP is visual evoked potential and it has you look at a red dot placed on a TV screen while they play a reverse pattern checkerboard black and white pattern in the background. You must try and keep your eye on the dot. This measures optic nerve latencies.

These just give further evidence of "something is wrong" and it point to MS.

Good luck, let us know how it goes, OK?
Lisa