Is It an MS Diagnosis or Something Else?
I am told I have primary progressive multiple sclerosis (PPMS), and my symptoms appear to be in line with that diagnosis. I continually have a slow gait, leg weakness, balance issues, and fatigue. There is never a break from those symptoms. Intermittently, I have cognitive issues, slurred speech, and burning leg cramps.
Over the past eight years, my MRIs have come back showing lesions on my brain and spine. Before 2010, I had symptoms but no visible lesions. Doctors have told me that the lesions on my spine look like they are multiple sclerosis (MS), but the ones on my brain do not.
My new neurologist explained that when MS is present, the lesions usually congregate more in the center of the brain. My lesions are few and scattered on the outer perimeter instead.
Due to that discrepancy, my doctor decided to order a blood test to search for neuromyelitis optica (NMO) antibodies, which are present in NMO, also known as Devic’s disease. Devic’s is a more aggressive disease than PPMS. Luckily, I tested negative for the NMO antibodies.
There are many diseases, disorders, syndromes, and conditions that can mimic MS. This can add challenges to the already-complicated process of diagnosing unpredictable MS.
The fact that my neurologist decided to check for another cause of my symptoms set my mind in motion. Could there be something my care team has been missing? Or is she just being extra cautious?
In a post on its website titled, “Other Conditions to Rule Out,” the National Multiple Sclerosis Society highlights other health issues that can mimic MS. When checking out the list, I noted that not all are demyelinating diseases or produce lesions. With that information, some diagnoses were ruled out for me right away.
In the early years of my symptoms, doctors speculating on my diagnosis thought I had fibromyalgia. Fortunately, they did not diagnose me with it. If they had, it would have been much more difficult for me to receive disability compensation.
Also, early on, with no visible lesions appearing on the MRI, the doctors looked at a possible Chiari malformation that would have involved an incredibly risky surgery. They weren’t even positive the surgery was an effective option, so I opted not to proceed.
As it stands right now, it is likely that PPMS is my correct diagnosis. But I will continue to research other illnesses and figure out why my brain lesions are located where they are. I will never give up on my search for answers about my condition. I hope you will keep researching your own!
Please join us at the Multiple Sclerosis News Today forums! Do you believe your MS diagnosis is correct?
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Dallas
I was diagnosed end of April this year and about to have the ocrevus infusion next week
I too have an odd gait, leg pain ankle n tired sometimes eyes are fuzzy.
I'm new to all this ...
Eeek
Debi Wilson
Hi Dallas! It's good you are starting treatment so quickly after diagnosis.
I know an MS diagnosis can be overwhelming, if you have any questions, we have an MS Forums to help answer them.
http://multiplesclerosisnewstoday.com/forums/
Thanks, for your comments! Wishing you the best , Debi
Jason
Why don't you try HSCT?
Debi Wilson
Hi Jason, I will discuss with my Neurologist, Thanks! Debi
Rishi
How’s lemtrada infusion ?
Any idea
Debi Wilson
Hi Rishi,
Ed Tobias has written many articles on his Lemtrada journey. Here is his latest http://multiplesclerosisnewstoday.com/2018/07/17/ms-lemtrada-journey-roller-coaster/
and he links to his other articles at the end.
I hope this helps!
Debi
Katherine
I too have PPMS and have lesions on my spine as well as my brain - I have read that PPMS patients actually have more lesions on their spine than in the brain - I am not sure of that as I get new in both locations periodically .. I started out being misdiagnosed with Fibromyalgia and had periodic flares .. when symptoms began to occur more and more often and more severe and some were not even Fibromyalgia symptoms and I had several severe falls - a few injuries put me in the hospital and more care afterwards; My Primary Care Doctor said she had done all she could do for me with these issues and referred me to a Neurologist within short order I was diagnosed with RRMS with no doubt... but then my last MRI showed new lesions and I also had another fall (the worse yet- I am still dealing with the injuries and the fall was 4 months ago) --and my symptoms had not relapsed in quite a while soo my new diagnosis is PPMS.. Copaxone failed me and actually I had a lot of reactions to it as well... I have begun Ocrevus infusions( I am certain this is way for me!!) -my next full dose will be in December.. I am walking (with a cane) and working fulltime.. so I still productive albeit fatigued !!! I am so very thankful for my Medical and Neuro Team (and Insurance) My worse fear is PML as the symptoms are the same as what I have anyway but more pronounced I am told -so I hope the people around me are paying attention! You know even 20 - 30 years ago not much was known and leaps and bounds !! with all the research and the availability of meds and information etc... it may be the best time to have this disease. Peace - I hope they can help you!!
Debi Wilson
Thank-you Katherine! I'm sorry to hear about your terrible fall!
It is interesting you said PPMS has more spine lesions than brain. I will look into that!
That is great Ocrevus is helping you! It sounds like things are looking up! Wishing you the best, Debi
Dawn
I am so happy I stumbled upon this
I was diagnosed with fibromyalgia as well but now I have had progressively worse symptoms and real relief inbetween. I had what they said was. Mini stroke in November and have never really gotten better from it. Now I had a fibromyalgia flare to the point I couldn’t walk and effected my eyes and walk my dr put me on steroids and it did help my all over pain but all the other symptoms remain.
I was admitted to the hospital as they suspected another mini stroke and did a MRI but came back clean. They said to me they are thinking it’s MS but are perplexed on my MRI scan. This is all so frustrating and sad and I just wish I knew what was going on with me.
MO REARDON
Have you ruled out Psoriatic Arthritis? That can cause all those symptoms & lesions later in separate episodes. Mo
Debi Wilson
Hi Mo,
No I will check Psoriatic Arthritis out, thank you very much! Debi
Anita
I am a 59 y/o female diagnosed with PPMS 3 years ago. I felt some symptoms about 3 years prior to that. I have left leg weakness, minor left leg foot drop, fatigue and sensitive to heat. Outside of that, all ok. With that said, I have had about 4 falls usually due to tripping over stuff. I walk my dogs, still clean house, etc. MRIs show brain lesions but spine is clear. I keep thinking to myself, maybe I don’t have it. Howver, something is wrong. I used to be able to walk in my community at least a couple miles (about 5 years ago) but can not even think of that now. I have not had the spinal tap. I am afraid to get it. Right now, I hold on to the hope that maybe it’s not MS. If I get the tap and it shows I have it, then what? I just don’t want to know because it gives me hope that I don’t have it.
Debi Wilson
Hi Anita,
Thanks for sharing your story! I understand your feelings on the spinal tap. I feel the same! However, the earlier you can get your diagnosis, the earlier you can start a treatment.
I am surprised you do not have spinal lesions. What does your neurologist think of that?
Debi
Tom Rifkin
My personal experience is that it’s far more productive to accept the diagnosis and willfully find the treatment that works best for you. It will likely take s few tries. If nothing else I’ve learned to not fight either the diagnosis or the disease. You’ll lose every time. Embrace your treatment, learn what you can and can’t do and set out to have the best life you can under the circumstances.
Debi Wilson
Hi Tom,
Yes, I agree, and I am 95% my diagnosis of PPMS is correct. But, I also will continue to research, because I really want to know why there is a discrepancy with my brain lesions.
You are correct Tom, about living our best life.
Thanks for your advice and comments !
Best to you! Debi
Anita
He just said that some individuals with MS don’t have the spinal lesions. We certainly monitor it because it doesn’t mean that they aren’t coming. I think that’s why my symptoms are minor compared to some other individuals.
Debi Wilson
Thanks for the information, Anita!
Carrie
Anita, I am in the same boat and did not think it was possialbe to have PPMS and walking issues with out spinal lesions. You are they only other I have found so far, My sysptoms are the same as yours but include left arm weeknes and severe weekness of the last 2 fingers on my left hand. Any updates for you as I really question my diagnoses. Though I have been tested for lyme and negative. It was a postive spinal tap that sealed my diagnoses.
Tammy Belmore
Sounds like Lyme disease, mine caused my demyelination...
Tammy Belmore
I would look into lyme disease. Google the Horowitz Lyme Symptoms Questionairre, download and take it. Score at end will reveal the probability...
Debi Wilson
Hi Tammy,
I will, thanks!
Debi
Jennifer Ziegler
Don't want to sound too pessimistic, but Yeah, start treatment if it isn't invasive and is successful...oh, well, actually, good luck with finding a good treatment.
Check for Lyme disease markers. You will probably need a naturopath for this b/c WM docs don't like to do the test (too expensive and too out of their scope of mal-practice).
Finally, be good to your gut bacteria. It starts in your mouth, so please do not use anti-bacterial mouth wash. Eat lots of green leafy vegies and beats to replenish the good bacteria. Mouthwash will kill bacteria (good and bad) before they get to the gut and then the good bacteria are dead and cannot convert nitrates to nitrites nor produce things like the hormone serotonin, etc..
It would be smart to stop/limit milk (not just lactose) because milk protein has been shown to create things like inflammation and cancer. Research Dr. Campbell's China Study.
Debi Wilson
Thank-you for the information, Jennifer! Best to you, Debi
Denise
Canadians, be careful sourcing a Lyme diagnosis.
My doctor told me we are not covered by disability if diagnosed with it.
Look into Stephan Harrod bhuner’s books on Lyme and co-infections if that’s the rout you are taking.
Lots of treatment options that address symptoms, regaurdless of which diagnosis they give us.
Naturopath, amazing, gave me NrF2 supplements and glutathione injections, better than Tecfidera IMO.
Also, lions main helps with remyleination - there are studies out there addressing so many of our signs and symptoms, be bold and think outside the box.
These are serious centurions we face, no time for passivity.
Remember to breath
Love to all of us
Denise xo
Debi Wilson
Thanks, Denise!
Debi
Helene Epstein
Hi Debi:
Thank you for sharing your journey. Since others have mentioned additional alternate diagnoses, I will ask whether not you’ve been thoroughly checked out for neuroborreliosis, a form of Lyme disease that impacts the central nervous system and produces lesions on the spine and brain. It is a difficult diagnosis to confirm with most lab tests, though there are a few labs that have greater reliability. One is igenex in California. My son had a different form of neuroborreliosis which was confirmed with a brain SPECT scan at New York Presbyterian Hospital. Check out ILADS.org for more information.
Best of luck
Helene
Debi Wilson
Thank-you Helene, I have never heard of that. I will check it out! Best to you, Debi
Scott
Mine started as transverse myelitis 10 years ago and diagnosed as ppms 5 years ago. Regardless of accuracy, the ms diagnosis, was much more useful for access clinics groups, new medication etc. My sense is Ms diagnosis is both an art and science. Seems regardless which demyiliating diseasee, very few real options once the damage has been done.
Debi Wilson
Yes I agree, Scott. There are not many options at this time, but I remain hopeful for the future! Controlling our symptoms seem to be the best bet right now.
Thanks for your comments,
Debi
Sarah
I'm so thankful that I found this article. I feel like I am living the exact same situation that you referenced "in the early years." For the last year plus, I have been experiencing progressively more and worse symptoms (including the ones that you listed for yourself.) Many of the medical professionals that we saw in the beginning said that the symptoms are extremely consistent with MS, but when a brain MRI revealed no lesions, they began to look elsewhere. One Dr. was headed toward fibromyalgia (that she even admitted was more of "by default" and not really all that good of a match). We did not continue down that route. Now, I have been on the chiari malformation issue. One neurologist said that it's a very small chiari, but he thinks it is causing most of these symptoms and could be fixed with a surgery. A second neurologist said that it's definitely not that because the chiari is so small that it's borderline even being considered a chiari. He said that the risky chiari surgery is definitely not the way to go. In the end, I've been left with "you have all the symptoms of MS, and it really does sound like MS, but with no lesions it must be something else." Am I reading your article correctly that there was a period of time that you had symptoms but no apparent lesions? If so, can you tell me how long that continued until the lesions appeared? And were you able to get any help during that time? Thank you for any help you can give!