Symptoms and No lesions, feel alone and uncertain.

[suziq38]

You need to get a 2nd opinion. When a patient has TM, but no lesions in the brain, and none in the spinal cord, the diagnosis is questionable. The Copaxone could be doing you more harm than good. You may have just had GBS. Don't just treat yourself because you like the idea of having a diagnosis of MS. Google the McDonald Criteria 2010 version and you will see that you do not meet that criteria, unless they are just treating you for clinically isolated syndrome, which is another thing entirely. You don't have MS in the eyes of the criteria, and with any new neurologist, they would agree. Especially since ON is called into question.

Do yourself a favor and get a second opinion.

Lisa
Moderation Team

Lisa, I so agree with you.
I have been diagnosed with TM.
Even with this diagnosis, my MS neurologist says only that he "believes it to be TM." In other words, he is still not sure.

That being said, this new diagnosis came after I wrote him a letter pretty much stating that he had to prove to me that I had MS before I would go on any drug for MS.
I tested negative for all blood tests, my brain MRI showed nothing, I do have a lesion on my cervical spine at this time. My LP (I will not take again, as it was way too risky), was very clear.
I have had one episode where I could barely walk while I was on vacation. I overworked myself, and it was very hot.
The doctor says that I need at least one more exacerbation to make an MS diagnosis.

I really do not want one. Right now I am functioning O.K., so unless things change, "ignorance is bliss."

The MS drugs are so harsh that I agree with Lisa.
Do not take them until you are sure that you have MS.

Good Luck.

[suziq38]

Here it is in plain english that you can in fact get diagnosed without an MRI. If your neuro exam shows 2 separate areas of lesions (which they can pin point pretty well in a thorough exam) and you have two separate attacks observed clinically, and everything else has been ruled out, you can be diagnosed with MS.

Not saying this is typical, but it is in the criteria. Obviously there are a lot of mimics, and for some reason there are a lot of people showing signs of MS without lesions popping up on this board lately. Instead of attacking every thread, just give them a brief reply, and if it upsets you, then don't come over here and read for a while. Give yourself a break!

To the OP, it is very possible it is just GB and you are having residual symptoms. Or it is possible you had an acute attack of MS. It happens. It's not typical, but it does happen.

There is also some information out there on chronic progressive myelopathy. Interesting read, some cases turn out to be MS and only can be determined after autopsy. Definite MS can be seen physically, but never showed up on MRI. But there are also a lot of other reasons for it.

I would think that if I were you I would want to have a heart to heart with the neuro and ask him to explain how he has ruled out all other ms mimics and GBS. Being on a DMD is a big move. Hopefully he is right and it is MS and the DMD will help!! But it would be awful to have it be something else and be on the DMD for nothing.

I don't understand how you can determine for sure that a patient has lesions in the brain and/or the spine without an MRI. Please educate me. I am new at this.

[vsantos1105]

You need to get a 2nd opinion. When a patient has TM, but no lesions in the brain, and none in the spinal cord, the diagnosis is questionable. The Copaxone could be doing you more harm than good. You may have just had GBS. Don't just treat yourself because you like the idea of having a diagnosis of MS. Google the McDonald Criteria 2010 version and you will see that you do not meet that criteria, unless they are just treating you for clinically isolated syndrome, which is another thing entirely. You don't have MS in the eyes of the criteria, and with any new neurologist, they would agree. Especially since ON is called into question.

Do yourself a favor and get a second opinion.

Lisa
Moderation Team

I find this extremely offensive, lisa. I am NOT treating myself. I am under the care of a neurologist with a specialty in MS. Excuse me for taking his opinion over yours. I came here for support. I wrote my post in a pool of tears, and instead of compassion you accuse me of liking the sound of a MS dianosis? Who in the right mind LIKES the thought of having this horrible DISEASE??

What do you know? Have you seen my medical file? Are you monitoring my symptoms? Have you been part of any research teams that observe the risks of taking nothing vs something in cases like mine?

I will not be posting in this forum again. The last I looked it was for "limbo landers". But apparently I can't voice how I'm feeling here. I'll look elsewhere for support.

And for your future reference: I could NOT have had GBS. the neuro I originally saw was a quack. The fact that I had reflexes, and control over my bladder despite all my other symptoms proves it. Also, no one with such severe paraylsis as I had that is related to GBS just gets up and walks away from the hospital after IVIG. True GBS takes months and months of recovery.

And also, my insurance does pay for my copaxone. They're willing to back up my doctor's opinion.

[MSer102]

Here it is in plain english that you can in fact get diagnosed without an MRI. If your neuro exam shows 2 separate areas of lesions (which they can pin point pretty well in a thorough exam) and you have two separate attacks observed clinically, and everything else has been ruled out, you can be diagnosed with MS.

I don't understand this either. It's not possible (at least in an industrialized country) to get diagnosed without an MRI because it isn't possible to rule out everything else without an MRI. And in the criteria I'm sure that when it says "lesions" it means lesions that are typical of MS. Without an MRI it isn't possible to know what kind of lesion is causing a problem. The lesion could be a tumor or a bulging disc pinching a nerve. The criteria don't mean just any kind of lesion. Objective evidence of "a" lesion isn't enough to conclude that it's an MS lesion. It takes an MRI to show what kind of lesion it is and to rule out other causes.

It's possible to be diagnosed with a negative MRI but that's something else.

The article in Wikipedia is - well - Wikipedia. There's so much missing from the original article that its barely believable. The table about the 2010 revision is missing the footnotes from the original article. Even the table put out by the NMSS is missing the footnotes from the original and it doesn't say quite what the original article says.

The original article says:
"No additional tests are required. However, it is desirable that any diagnosis of MS be made with access to imaging based on these Criteria. If imaging or other tests (for instance, CSF) are undertaken and are negative, extreme caution needs to be taken before making a diagnosis of MS, and alternative diagnoses must be considered. There must be no better explanation for the clinical presentation, and objective evidence must be present to support a diagnosis of MS."

If the criteria specify to use extreme caution in making a diagnosis when MRI and LP have both been done and are negative I think its a reeeealy big stretch to assume that making a diagnosis of MS is okey dokey without even attempting an MRI on a person who is able to have one.

In some countries MRI's might not be easy to get so I think that's why the criteria allow the possibility of diagnosis without one. But in the US there's practically an MRI on every street corner so I think it's pretty much a requirement that an MRI be done. Any good neurologist who comes along later probably isn't going to believe a diagnosis made without an MRI. And like I said before it isn't possible to rule out all other causes without doing MRIs.

I think its a bad idea to rely on Wikipedia or other summaries for the details behind the 2010 criteria. This is the original medical article: http://onlinelibrary.wiley.com/doi/1...ana.22366/full

[wendya432]

A thorough neuro exam can find lesions. You can google it if you'd like. But by finding areas of nerve damage in your exam they can be pretty good at figuring out about where the lesion is. Also, if you are having a relapse they can tell what has changed from last time.

There are certain things that are definite signs of nerve damage. Like, having a positive babinski sign, or an intentional tremor, etc, etc.

Say you go in because you are dizzy, have vertigo, have a tremor, etc. The neuro will do an exam and if you fail your romberg test (can't stand with eyes closed), and walk like your drunk and can't do the finger to nose test it is pretty indicative of a cerebellar lesion. Then it goes away after steroids, and a month later you come back with leg weakness. They do your exam and you have spasticity, positive babinski, hyper reflexes, ankle clonus, they can be pretty sure there is a lesion somewhere affecting your upper motor neurons on that leg. They give you steroids and you get better.

Just an example of course, but that would be a case where there is clear evidence of 2 attacks separated in time and space. Obviously they would want to do an MRI, but they could very well diagnose just on the clinical data alone.

Of course all of us here in limbo are not such clear cases!!!

[bubblebabe]

No

No, a thorough neurological exam can suggest where lesions are located but that can NOT be confirmed without an MRI and it would be negligent for the doctor to guess where lesions are without doing an MRI.

If it was that easy then they wouldn’t bother to send us for MRI’s.

Symptoms do not always match where lesions are located; I for one have several symptoms that do not correlate with the location of my lesions. There can also be other things going on that cause those symptoms such as pinched nerves or brain tumors.

The bottom line is that the McDonald criterion says you have to have lesions and the only way to confirm that you have them is by doing an MRI.
This forum needs to have accurate information and twisting the wording of the McDonald Criteria will not help anyone.
Limbo Landers who are desperate and looking for answers need to know that there is a criterion for being diagnosed and suggesting anything around that will only give them false hope and leave them still asking why when they don’t get a diagnosis.

[SmartyPants196]

Don't second guess your gut feeling

Having MS isn't the end of your life, you can learn how to live with it, it sounds like you have MS, i had mono during my teenage years that was the first perfect storm, then 40 years later, i was having balance problems, fatigue, heat sensitive, my doc at the time sucked, he told me it was all in my head.

Don't listen to anyone but yourself, listen only to your neurologist, you dont have to have lesions in your MRI to have MS, spend your time adjusting to what you have.

Don't listen to any family member who isn't on board, the book "Lean on me" by Nancy Davis is the first book you should read, get rid of toxic people in your life they drain you of energy you will need for yourself.

Make sure which kind of MS you have, remitting relapsing or progressive, progressive is my type, i get worse on its own schedule, then can stop awhile but once i loose function it doesn't come back, remitting comes and goes. Spend your time with positive people. Read my hubs about being newly diagnosed at:

***

Since i got to retire early my life is changed but for the better, I am writing novels and gardening and enjoying my now unstressful life. Stress is a trigger it makes you worse, sit down and breathe, your loved ones will come around, send them brochure's about MS and if they are mean about it to you avoid them.

Hi, I'm Vanessa. I'm 25, a mom of 4. Two boys 7, and 5, and twin girls 3 1/2. I started having health issues two and a half years ago. One December day I had a weird feeling in a couple toes. By the next evening I had lost complete use of my legs and had severe weakness in my arms. I was life flighted to Reno where they dxed me with Guillian Barre Syndrom. After 3 days and lots of IVIG I was sent home with a pat on the back and a "full recovery" prognosis. However nothing has been right with my body since. The neurologist who treated me in Reno ended up reversing her dx, and treated me like I was crazy. "Stress" she said. I said I wasn't stressed, but she contended that I have 4 kids and couldn't be stress free. She prescribed me antidepressants and refused to delve further into my numbness and tingling and extreme fatigue. I threw the prescription in the trash and never went back. 5 doctors later, 2 of which were rhemutologists, I have found a great neurologist who not only seems to care about me as a person but seems to know what the heck he's talking about!

However, my MRI's and spinal tap have all been normal. I have complete numbness in areas, optic nerve paleness, tingling, twitching, spasms, fatigue, bladder dysfunction...well you know, the works of an auto immune stricken body. On top of all that I have grown weird simple cysts in weird places (large bowel, heart, ect.) which have required 3 surgeries, and now am suffering from pelvic pain and abnormal bleeding.

My neurologist tells me "this is MS I just can't prove it yet". I'm on copaxone plus some symptom managing drugs, and agree that yes MS fits the bill... but I feel so alone. Any MS sufferer I've talked to knew right away. 1st bought of weakness = lesion! Why do I have all these symptoms and no lesions? Is there anyone out there who went threw this and then over time the lesions became visible? My neuro says it took one of his patients 7 years, and she lost the ability to walk normally before then.

Family members and friends don't understand. I'm bombarded with well meaning people who want me to try this supplement or that supplement, cut this out or follow the "know the cause" diet. Even my husband, who is supportive and loving beyond measure, can't understand how WRONG my body feels sometimes. Is there any of you here that were in limbo for years before a lesion showed? Does anyone understand how this feels?

My "offical" medical chart has a dx of "Probable MS". I have another MRI scheduled for November. As horrible as it sounds I'm hoping for it to show a lesion. I just want to have the relief of knowing for sure.

Thanks,

-Vanessa

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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[wendya432]

No, a thorough neurological exam can suggest where lesions are located but that can NOT be confirmed without an MRI and it would be negligent for the doctor to guess where lesions are without doing an MRI.

If it was that easy then they wouldn’t bother to send us for MRI’s.

Symptoms do not always match where lesions are located; I for one have several symptoms that do not correlate with the location of my lesions. There can also be other things going on that cause those symptoms such as pinched nerves or brain tumors.

The bottom line is that the McDonald criterion says you have to have lesions and the only way to confirm that you have them is by doing an MRI.
This forum needs to have accurate information and twisting the wording of the McDonald Criteria will not help anyone.
Limbo Landers who are desperate and looking for answers need to know that there is a criterion for being diagnosed and suggesting anything around that will only give them false hope and leave them still asking why when they don’t get a diagnosis.

Actually, it is right in there. I'm not trying to split hairs here, but if you are going to post info, you need to be correct. Obviously, most people are NOT going to be diagnosed without an MRI, but it is definitely possible.

Here I am quoting directly from the mcdonald criteria. Pay attention to number 5 and also number 8.

"Guidelines for the accurate diagnosis of MS according to the McDonald criterias

1. The diagnosis should be made by an experienced clinician with expert knowledge of MS and similar neurological conditions.
2. The prior probability that the individual has MS depends on factors such as age, ethnicity and geographical location.
3. Objective evidence of dissemination in time and space of lesions typical of MS is mandatory, as is the exclusion of other, better explanations for the clinical features.
4. Historical reports of symptoms may suggest previous episodes of demyelination, but cannot be used without objective evidence to satisfy the requirement of lesions disseminated in time and space.
5. MS can be diagnosed on purely clinical evidence of lesions separated in time and space.
6. Radiological (MRI) and laboratory evidence is desirable and may be essential where clinical evidence is insufficient for a secure diagnosis.
7. The choice of investigation will be determined by the clinical situation; for example, a delayed visual evoked potential is of value in a person with a spinal cord lesion but is of little value in a person with optic neuritis.
8. MRI is less useful in older people and in other inflammatory conditions such as acute encephalomyelitis where its specificity is lower. MRI is not applicable in people with metallic foreign bodies, pacemakers, etc or in those who cannot tolerate the procedure."


And here:

"Clinical presentation Two or more attacks; objective clinical evidence of two or more lesions.

Additional data needed to make diagnosis None.

Comment If tests (MRI scans or CSF analysis) are undertaken and are negative extreme caution must be taken before making a diagnosis of MS. Alternative diagnoses must be considered. There must be no better explanation for the clinical picture."

So of course it isn't typical, but it can happen.

[sardi_g]

Yea this thread is kind of worrisome. I just asked my father who is a neuro-radiologist and he confirmed everything that bubblebabe said. The brain is too complex to be mapped to a function except in the broadest sense. If the doctor suspects a lesion they order an mri.

There were many good thought out answers and arguments in this thread but it doesn't correlate with standard practice. A neurologist can *suspect* a lesion but they would follow up with an mri to confirm.

Let's just stick with standard practice bc anything else will just complicate an already confusing issue.

[22cyclist]

2 or more objective clinical lesions means those seen on an MRI. Ask a neurologist. You don't have to believe me. You do not get diagnosed without 2 lesions at least.

Lisa
Moderation Team

[MSer102]

Limbo Landers who are desperate and looking for answers need to know that there is a criterion for being diagnosed and suggesting anything around that will only give them false hope and leave them still asking why when they don’t get a diagnosis.

Absolutely! I couldn't have said it better myself.

[SNOOPY]

You can have MS without lesion showing on MRI. If you have MS lesions will show up at some point. However, the more years that go by without MRI evidence the less likely MS becomes.

If there is no MRI evidence you need other (positive) testing results which can help support a diagnosis of MS. If all testing, which could support a diagnosis of MS, is negative then a diagnosis of MS cannot be made.

I was diagnosed with a negative MRI. My Lumbar Puncture was positive for o-bands (4), I did not pass a neuro exam and I was having a severe exacerbation.

Any doubt I or my neuro may have had was gone one year later when I had my second severe exacerbation.

[22cyclist]

SNOOPY: All of that changed about being diagnosed without lesions when the McDonald criteria changed. I just don't want to confuse anyone. In 1985 things were different.

Take care
Lisa
Moderation Team

[wendya432]

From the MS Society (bolding mine):

"Although MRI is a very useful diagnostic tool, a normal MRI of the brain does not rule out the possibility of MS. About 5% of people who are confirmed to have MS do not initially have brain lesions on MRI. However, the longer a person goes without brain or spinal cord lesions on MRI, the more important it becomes to look for other possible diagnoses."

If you had to have MRI lesions for a diagnosis it would be 0%. Not trying to argue or be a pain. Not saying that everyone with no lesions has MS. But, the point is, it is entirely possible to get a diagnosis without lesions. End of story.

[Marco]

Hi Vanessa,
I know how difficult this process can be. I was diagnosed, undiagnosed, rediagnosed, downgraded diagnosis and finally upgraded diagnosis back to MS. As if I wasn't struggling enough with symptoms all these new terms came at me with very little explanation or concern. I was so glad when I found MSWorld and people that understood what I was dealing with and they showed compassion. There were times that I got conflicting information, especially from different websites, but overall the MSWorld experience has been wonderful.

It certainly looks like you've had your share of symptoms and medical confusion as well. I'd like to share a few things with you with the intent to help, but please forgive me if I mess up because I do have extra holes in my head.

I see a lot of people in "limbo" and many are vehement about getting diagnosed with something. At times, there are similar patterns to medical school students that catch all kinds of random diseases they are studying about. I think some doctors believe we are hypochondriacs, stressed out or in some other form of crazy because they know from their own personal experience how powerful the mind can be.

This is also one of the reasons most doctors are reluctant to diagnose MS unless they are sure the patient has MS. Even then people get misdiagnosed and undiagnosed far too often, especially when changing physicians. There are also doctors concerned with "doctor shopping" patients that have seen too many doctors for THEIR comfort level and then minimize the patients stated history. Doctors are after all fallible and prone to human error like the rest of us.

I am glad you finally have found a doctor that you believe is looking out for you and competent. I sure hope this new doctor is doing a form of "proof texting" with a potential MS diagnosis. Again, we are plagued by doctors and the human condition. *sigh* The National Multiple Sclerosis Society is a proponent of getting on MS disease modifying therapies quickly so hopefully the Copaxone will help if you do end up getting diagnosed.

I do think there is a lot of confusion about lesions versus symptoms. You can have lesion activity without new symptoms and new symptoms without any visible lesion activity. So while it's possible your initial weakness symptoms were lesion related that also may not be correct.

Not all of your symptoms are common in MS patients, but each of us has our own course for disease progression. It's pretty common that people with MS blame unrelated things on MS since the "evil monster" is to blame for so much.

I would also like to inform you that depression is a very common symptom for people with MS. MS can directly or indirectly cause depression as can many of our medications. So while you may not "feel" depressed it doesn't mean depression isn't at least partially responsible for one or more of your symptoms. Personally, I'd take the antidepressants if offered as this may help rule out depression as the culprit. There are also a number of antidepressants that are multipurpose drugs (cymbalta, bupropion, amitriptyline quickly come to mind). So you might take cymbalta for nerve pain, but it could have prophylaxis benefits versus depression or anxiety.

I simply believe it's better to treat the symptoms that you do have than chase a diagnosis that you may not have. I would caution you to systematically start and stop one medication at a time so you have a better idea of what is doing what. The other benefit is you want to present yourself as a compliant patient to your medical team to help build trust with your relationship.

It's pretty common that well-intentioned family & friends actually make things harder on you with helpful advice. Probably even more common that a close loved-one enters denial. Like us, most loved ones will go through the 5 stages of grief and it takes time. I try to look at the other person’s intent and try to respond instead of reacting. I know it's hard, but you can do it.

You can be diagnosed without lesions, but this would be a RARE occurrence and something that many doctors would never do. An incorrect diagnosis may do more harm than any perceived good. MRIs may have become the "de facto" tool for doctors in the US, but have a smaller footprint in many other countries.

As others have cited, the NMSS has stated that 5% of people with CONFIRMED MS have a normal MRI. You however do not have confirmed MS so you would not fit in this category.

Lesions may heal/disappear over time so intermediate mris may show zero remaining lesions. Today, the number of people getting diagnosed without MRI documented lesions is NOT anywhere near 5%.

The converse is also true where a person may have a brain full of lesions, but the lesions do not resemble MS lesions, but are rather caused by fevers, migraines or a number of other conditions.

In the end, you are not being diagnosed by strangers on the Internet. You will be diagnosed by your neurologist and that has not happened (yet).

For now, I would seek symptom management to improve your quality of life. Many of your symptoms would be treated the identical way whether you had MS or not. I would seek out those treatments. The strategy I would use would be to prioritize your list of symptoms and then sit down with your doctor and try to tackle them in order. Again, I would caution you about starting/stopping too many medications at one time. So your TREATMENT would very much resemble a person diagnosed with MS even without the focus being a diagnosis.

I'm pretty sure I made grammar, spelling, logic and other mistakes in this post. My intent was to try and help steer your focus away from the formation of a lesion that may never happen and towards improving parts of your life that you can impact.

BTW, welcome to MSWorld ... and I wish you well with your efforts.