Is it MS or not? No answer !

[Lonelytraveller]

Hi,

I have posted here, now I see 5 months ago. The crux of the issue was, back then, I was having lightheadedness, off-balance feeling (positive Romberg test), extreme fatigue, many hours even several days in bed, left foot tingling, radiating to the right, and also tingling face/toes/ tongue, left side weakness, difficulty with speech, weak extremities and nausea, constipation, bladder issues, etc, etc. Textbook MS symptoms. BTW I only googled MS after my second neurology visit.

So, I tried hard to make my PCP refer me to a neurologist (though we pay them a lot still we have to convince them, and he made me take mental therapy before any neuro referral and seen a neurologist after 4 months of insisting. CAT scan okay, MRI of the brain report: " Foci of increased T2/FLAIR signal in the white matter which are nonspecific but likely sequelae of chronic ischemia. Following contrast, no abnormal enhancement." Blood work all normal, work-up normal (per neuro).

At that point, I posted on this forum, as I was trying to find why the neuro was reluctant to order Spinal MRI to further investigate and instead, she cleared me neuro-wise and referred me to ENT for balance issues, as if all my symptoms were okay. Few friends here urged to change the neuro while some others told I was overthinking; all I took with respect and appreciation.

So, I opted for change and scheduled with an "MS" specialist. Though she is a bit vague, she noted the brain MRI is concerning! (" Foci of increased T2/FLAIR signal in the white matter which are nonspecific but likely sequelae of chronic ischemia. Following contrast, no abnormal enhancement.")

So, I proceeded with a spinal MRI (neck + spine) and a lumbar puncture, both came unremarkable, she also continued with several other blood work (D B vitamins.) and also an EMG (for ruling out peripheral neuropathy). I also saw an eye doctor to check my optic nerves, that was also normal...All good...and that was a relief as I convinced myself I was really overthinking. I started using Gabapentin for tingling and Meclizine for balance, that I must confess, did not helped me...Yet the MS specialist never cleared me from MS, and it is very disturbing to see R/O MS (ruling out MS) at the top of each of her assessments...I will see her again in November and she will schedule another brain MRI next year March. All sound good, no? Indeed no.

As of mid-July, my symptoms are back, as if I am having this notorious MS recurrence, though this time they are less severe. Lightheaded, left foot tingling, some balance issues, headache, sleepiness, weak and nimb extremities and fatigue. I reached to the MS neuro, she basically recommended Gabapentin and Meclizine again, and told I can schedule if further discussion is needed (she has no slots until October)

I do everything to avoid the symptoms (exercise, plant-based whole-food diet, Pilates, yoga, stress management etc.) I am a male of 47 and I have been tobacco and alcohol free all my life. Yet it looks like I have no control over this condition, and this makes me much nervous. Plus, I got this impression (true or not) from the MS neuro that she is waiting for the second MRI and would call it MS with further brain lesion activity, regardless of the rest assuring tests.

Finally, the ENT I saw offered starting "vestibular migraine" tests, evaluation as some of my symptoms intersect but they do not overlap. Before getting back to this forum again, I was thinking on giving the "vestibular migraine" tests a shot, as I was reassured with all the negative tests although MRI was not unremarkable.

So, I read on this forum about people diagnosed eventually with MS, ONLY with BRAIN lesions, and with the absence of negative tests. And I think it makes some sense, bearing in mind all the symptoms ppl have must have a reason.

Indeed, I am sick and tired of all this hospital engagement, the money spent, the burden of living with all these symptoms and more recently the uncertainty. Even now my hands are numb and feet tingling.

Could you pls share ideas on the likelihood of MS? Or how bad can it be with only brain lesions?

And if you think I should really pursue the vestibular migraine option?

I know it does not make much sense to ask here, but still, it may help and give some comfort to hear some thoughts from you all.

Thank you and hoping best of health for all.

PS. I was planning to get back here to write on my "overthinking" to help people having MS anxiety and hopefully that would be the topic for my next post.

[NorasMom]

The waiting is always the hardest part, regardless of the final diagnosis. Obviously, there's something wrong with you. I get that modern medicine can be wonderful, but the increase in available drugs just means that the doctors are a bit too cautious with making a diagnosis, which puts all the burden on the patient.

I can't offer much reassurance, but I can tell you that I've only ever had brain lesions, and they weren't visible until 15 years after my first MRI. It took a very long time to get a diagnosis. The best I can suggest is to treat your individual symptoms as best you can and just keep living your life as well as you can. It's frustrating and expensive, but eventually some doctor will put the pieces together correctly and begin actually helping you.

[Lonelytraveller in reply to NorasMom]

Thak you NorasMom, best regards.

[carolek572 CommunityAmbassador]

Go to another neurologist, Lonelytraveller . I was diagnosed 18 years ago by my PCP and it was confirmed by a neurologist that was reluctant to diagnose me. I expressed my dismay of my then neurologist to my PCP and she advised me to get a second opinion at the Neuroscience Center in Boston. Sometimes, another set of eyes can find answers that weren’t apparent to others. I hope that you get the answers that you deserve. Keep Smiling

[Lonelytraveller in reply to carolek572]

Thank you carolek572, my best regards.

[carolek572 CommunityAmbassador in reply to Lonelytraveller]

I forgot to mention that it took me about 10 years to get a diagnosis, Lonelytraveller . Multiple Sclerosis is not easy to diagnose! There is a blood test being developed (it might be available) to detect ‘ms’ more easily.

[Lonelytraveller]

How about the time you lost and the damage your CNS suffered in that 10-years?

[carolek572 CommunityAmbassador in reply to Lonelytraveller]

I try not to dwell on that, Lonelytraveller . I am in good hands today. 🤗

[carolek572 CommunityAmbassador in reply to Lonelytraveller]

Interestingly, I have not had any new lesions since I was diagnosed, Lonelytraveller

[Kit10]

I'm not convinced that "overthinking" is a real problem, though mistaken thinking can be. I think it's often a criticism made by people who can't or won't help you sort out what the truth is.

[Lonelytraveller in reply to Kit10]

Thank you Kit10, have a nice day !

[CatsandCars]

I don't have much to say, medically speaking. But living with uncertainty is really hard, especially if you're wondering if more damage is being done while your doctors are seemingly fiddling around. I really feel for anyone in that situation. To me, it looks like you have two choices. One, you can wait and see if your condition declares itself, so to speak, or you can find a more prominent MS specialist, perhaps at the university level. If you could even get someone to explain what they need to make a diagnosis, perhaps it would help you understand the wait. I do know that an incorrect MS diagnosis could be devastating, as the treatments have risks and side effects. I'm sorry that you're going through this, and I hope that you're able to get some answers.

[sashaming1]

I understand that MS can be hard to diagnose because other disease symptoms and physical evidence can look similar. But an MRI and lumbar blood sample can pretty much solve it I understand.

[Wtfisup]

Howdy! I’ve only had brain lesions which have not changed since 1st MRI in 95’. There are over 48 small scars in all areas of brain.

Whenever I’ve required a new neurologist, they question the diagnosis of previous doctor. It starts with “Has anyone ever considered it could be ____?” Last time it was small vessel disease. Nope. Still ms.

The MRI, lumbar puncture and 2 separate episodes lasting longer than 24hrs was how I was diagnosed then. I see my new neuro in September. Nothing is constant but change.

Gabapentin did nothing for me. When we decided to stop (on highest dose) had terrible discontinuation syndrome. Didn’t know what was happening to me and it was truly terrifying, especially the vivid nightmares!

Fortunately, migraines that I occasionally have are quickly gone with 100mg Imitrex.

I think you advocate for yourself really well and I know it’s exhausting and frustrating. I am guilty of overthinking too. I hope today is a good day! 🫧

[Lonelytraveller in reply to Wtfisup]

Thank you so much for sharing your experience. I understand your spinal tab came with some MS indicators while you had some lesions in brain MRI. For the moment the only “concern” for me is the brain mri as my spinal tab/ mri are unremarkable. Symptoms wise I guess, my symptoms never go away completely and they flare up every too months. I hope I am exaggerating but this is how I feel. Thank you !

[StacyHayward]

so frustrating. My spinal tap (have you had one?) was negative for MS. My first MRI was inconclusive. My Dr sent me to a neuro anyway who said he can’t say it’s Ms now but in five years it won’t surprise him if it is or if it isn’t. Fortunately he didn’t shrug me off, but saw me every three months. Without further testing, and just by observation, he diagnosed MS ten months later. I had classic symptoms.

They’ve tightened down on diagnoses since then, waiting for all the ducks to be in a row. I got lucky and got early treatment.

Truthfully though, I had symptoms five years before seeing anyone. I was 15 when they started. But nothing would have been found because tests wouldn’t have shone anything. I’m sure I would have been told I was tired because I was a teenager.

My advice, keep a journal of everything. Then you Dr can see a comprehensive timeline instead of what you remember.

If I could go back in time I would have.

[Lonelytraveller]

Thank you Stacy, very good advice.

My spinal tab is negative just as my spinal mri. I guess my brain mri is “ inconclusive “ like yours, as the there are foci in white matter but they don’t enhance with contrast.

So your brain mri and spinal tab have been negative ever since and is it just the symptoms ?

[MSFlea]

I agree with a previous statement that if you are not happy with your neuro, go get a 2nd opinion. I was diagnosed only on brain MRI and spinal puncture. Find someone with good reviews before you go to them, if you decide to get a 2nd opinion.

Best of luck

[mrsmike9]

In 2006 I had an MRI and the "tap" coming out inconclusive. In 2014, after falling off a bike because my legs froze, breaking an arm in 4 places, THEN they diagnosed MS. It can take awhile for the things to show up that aids with diagnoses.

[kdali]

Migraines can cause MRI changes. It's not unusual to have another scan in 6mo to rule out MS. MS severity varies. Some people only have brain lesions. Those lesions tend to be in specific brain areas, and some areas are less forgiving (cause more devastating issues).

Yes, I would do any tests offered!

[Lonelytraveller in reply to kdali]

Thank you kdali, appreciate your reply.

[bookish]

Have you had a trial of B12 injections yet? It would be the only way to rule it out as causal or contributory as testing is not reliable. Cheers

[Lonelytraveller in reply to bookish]

Hi Bookish,

Thank you for your reply, may B12 level was rested with blood sample , it is within normal limits, never heard of B12 injections though, is it smth new as a diagnostic tool ?

[bookish in reply to Lonelytraveller]

Hi, I am afraid that serum B12 testing is unreliable, often misleading and that being 'in range' means nothing as you can have a cellular deficiency at any serum level. There are other tests which can be useful but none which can rule out a deficiency for certain. Injections are the treatment for deficiency or metabolism failings as tablets etc don't work reliably for everyone (although they often raise serum level they can do this without fixing neurological damage). Have a look at your serum B12 plus serum folate, full blood count may help (things like MCV, RDW, Hb), active B12 (also called holotc), anti gastric parietal cell antibodies, anti intrinsic factor antibodies, serum gastrin, homocysteine, methylmalonic acid - but all can be normal and you still have a deficiency. Other conditions and medications may increase risk too and as myelin is affected in both conditions, there is history of people being told it is MS when it is B12. You might find this interesting pubmed.ncbi.nlm.nih.gov/158... and similar. Best wishes

[Lonelytraveller in reply to bookish]

Thank you bookish , interesting article. Btw my b12 was 409, take care

[bookish in reply to Lonelytraveller]

Depends a bit on the units of course, but there are doctors who would say that all adults should be at 500 or more. My serum level was 2000+ with oral treatment but I am still getting huge benefit from regular B12 injections. You have to look at symptoms and benefits not serum levels. Best of luck.