Can you really even rule out MS?

[ChristineK1]

Hi everyone,

I will make this as short and concise as possible, so not to lose any of you. :) To start, all of my symptoms first began seven years ago with three "episodes" occurring to date.

I have been under the care of very highly regarded neurology clinic in Minneapolis - I trust them, though something just doesn't feel right so I am in the process of getting a second opinion at the Mayo Clinic.

*** In 2008 I presented with random numbness, tingling, feelings of rigidness, burning & itching, all of which started after a couple days of feeling like I was being poked all over my body with a needle. This lasted for about 6 weeks.

-Neuro exam in his office came back as normal, though he did note that my deep tendon reflexes were symmetrical but 1+ (trace, or seen only with reinforcement)

-MRI with/without enhancement showed a couple small, non-enhancing hyperintensities deep in the right frontal lobe, as well as a "very slight" hyperintensity in the left thalamus (this was originally not even reported on my first MRI results but going back and looking through my neuro said it was present. Not sure why doctor didn't mention it originally.) MRI also showed I have loss of cervical lordosis.

-Spinal tap came back completely normal, no o-bands or other protein markers indicative of MS.

-Follow-up MRI 6 months later showed no change to previous scans.

My symptoms disappeared and I went on with my life not being bothered by any of these neurological symptoms for 6 years.

***In 2014 my symptoms reappeared and were all sensory in nature and started out the way the first episode did: feelings of being poked all over my body and then gradually more symptoms begin to show up over time. Numbness, tingling, feelings of a tight band around certain parts of my arm, etc. The strange thing is that all of my symptoms come and go, some lasting for a couple hours, some lasting for several hours but then returning the next day, etc. But I will have all of these happen for about 6 weeks again and then it all completely goes away. The most bothersome symptom being numbness on the top of my right pointer finger and this super annoying tingle on the top of my foot that just wouldn't go away for several days. As the tingle of the foot would get worse it also felt like a band was working its way up my calf. So strange!

I visited my neurologist and he seemed to think that most of my symptoms were due to the fact that I was under a great deal of stress. My father had recently passed away and I was getting married in less than two months.

I decided to skip repeating of MRI as my doctor really didn't think we would find much and I wanted to wait until I had gotten on my husbands insurance.


*** Here we are in 2015 and my symptoms reappeared in May. It all started again with that bizarre sensation of being zapped all of over my body and gradually other things started to happen in the days following. I will list out my symptoms this time to make it easier to follow what's going on....
    - Numbness top of right pointer finger, comes and goes - can be gone for days at a time only to reappear.
    - Tip of three right toes tingling a lot, this lasted for about 4 days straight. Super annoying!
    - Odd vibrating sensation on kneecap that would almost appear in a pulsing fashion. This lasted a whole day.
    - My right foot started to really bother me with having the whole thing feel like it was absolutely freezing but it wasn't cold to the touch. This would come and go and walking on it seemed to ease it a bit.
    - Any time I would take a bath or be in the heat, my right foot would go totally crazy with a tingling burning sensation that would creep up my whole calf too - felt almost like a band was around it. This happened nearly every night I took a bath (for over a week) but occasionally it didn't happen.
    - Right hand feels like the skin on top is tight and hand itself feels stiff and aches.

The odd thing about these symptoms is that it seems that when one thing disappears, another appears! What gives?! This whole "episode" has been going on for weeks now and is the most bothersome one yet. I was most afraid of how the bath would make my foot and leg feel terrible and that nagging buzzing feeling that wouldn't go away. It's honestly like someone is taking an electrical current and zapping away at the tips of my three toes...

I had another MRI in July 2015 which again came back with the same results as the original MRI in 2008 - right frontal lobe hyperintensities and slight hyperintensity seen in left thalamus. In other words, NO CHANGE on my MRI in 7 years! My doctor really thinks all of this points away from MS but I do understand it's a clinical diagnosis and nothing really can rule it out.....


I have high cholesterol and genetics that set me up for some potential vascular issues so my neuro sent me to a vascular doctor to check all this out....he was thinking it could maybe explain some of my "skin sensations", as he put it. I also feel like he basically just wrote me off. Anyway, I had an MRA and echocardiogram that all came back normal. This vascular doctor did run a bunch of blood work that did come back showing I have a positive ANA of 3.4.

Outside of the three sensory episodes that I've had, I do have ongoing terrible nausea, fatigue, and chronic canker sores that are TERRIBLE- all of this I've had since as a young child. I'm now 29. Also, I have had migraines since a child, which seem to be lessening the older I get. I did get a terrible migraine this last "episode" that sent me to the ER because I lost my peripheral vision in my right eye for 30 minutes -- of course I freaked out that it was optic neuritis but the doctors assured it was definitely an ocular migraine, neurologist later agreed and said it was classic migraine with aura. Anyway, I really don't get what could be going on? Does is sound like MS? Maybe some other autoimmune disorder? I'm going to the Mayo Clinic as I just feel like I'm not getting the answers I'm looking for.

Thank you so much for reading all of this. I greatly appreciate any input you may have!!!!

Best,
Christine

[suspiciouscombo]

LOL Kyle!!!!! You nailed it with that one! Could not suppress the chuckle on Hellman's.
:-D

[kwarendorf]

In my rarely himble opinion, the only Mayo that adds any value to life is Hellmann's.

Kyle

[HVAC]

It is not wrong to see another doctor in the same practice.

Alex

[supermum_ms]

Hi and welcome,

I personally don't think you symptoms when added to the continual normal MRI's, normal clinical signs etc would be consistent with an neurological condition like MS after 7 years, so from my perspective it's not just your normal MRI's that would make MS less likely but everything together.

I actually think you should seriously consider alternative autoimmune causation, before considering getting a second neurological opinion. It's 'possible' your ANA and your symptoms of low grade fever, joint aches, nausea, fatigue, and chronic canker sores, would be more consistent with something like Lupus, not saying it is but Lupus is said to be one of the greatest mimics and you might be better off seeing a rheumatologist rather than a neurologist.

Cheers.........JJ

[4happygnomes]

I was sent on a referral to the Neurology clinic from my Internal med doctor...I hope you get accepted so that you have the power to decide if you want to pursue it or not.

I get the response from everyone...family, friends, my internal med doctor...the Mayo, as you know, has such a strong reputation...but they do get it wrong once and again.

Yes, I was first seen there by Dr. Francis....she diagnosed me with MS and then retracted it after my MRI's came back clear.  It was a bit of a fiasco.  Second clinic was the Noran clinic.  The nice thing about MN is that there are a few to choose from where the Neurologists specialize in MS.  The hard thing is that you can't really get a second opinion within the same clinic...kind of a one and done deal.  

Karen

[ChristineK1]

Alex,

He "specializes in Parkinson's and MS" so you know, who knows what that really means. I'm gathering that it's maybe in my best interest to skip the Mayo for now... I'll need to keep searching! I feel like it's hard to get a referral to another clinic. Is it totally wrong to see another doctor within the same practice?

Thanks for all the input!

[ChristineK1]

Hi! I keep going back and forth whether to even pursue the Mayo of just go somewhere likely cheaper like the U. When I first contacted the Mayo they basically said you have two options on how to get an appt (since I was not a referral): you can start out seeing a very basic doctor who goes over your entire medical history and THEN refers you out to whichever dept(s) they feel fit best OR you can just select a dept you want to go directly to, they go over your medical history before they even decide if they'll take you on as a patient. I opted to just go straight to their neuro dept because I feel so much of this has to be neurological. Only downfall, if they don't feel you fit the criteria to be seen, you have to start all over again and they won't refer you to a different department. So here I am just waiting to hear back after they review my medical records from mpls....

I totally understand all you have said though! And it really makes me question going there if I'll likely still be in this "limbo" stage.

The clinic I've currently been going to is the MPLS Clinic of Neurology (is it ok to even post that on here? Oh well :)) It's an excellent place, they have some of the best for MS but I don't always feel like my particular doctor listens to me. So frustrating....

[HVAC]

Are any of the neurologists you have seen MS Specialists? If not you might want to see one. The Mayo is really hard to get a MS diagnosis especially with your MRI and LP results. Neurologists use the McDonald criteria to diagnose MS. Some old timers may diagnose with out MRI or LP evidence.

Alex

[ChristineK1]

Hi Ren!

Thanks for the reply! Jeez, 40 years to get a diagnosis. That's awful! But on the plus side, it's wonderful your disease progressed so slowly? In that time had your MRI change at all, even though still not showing classic MS signs? May I ask what other symptoms you've had? Mine are all sensory. My doctor seems to say that with no change in MRI, negative LP, no optic neuritis, all normal neuro exams that he just truly doesn't think I have MS.

I did have a ton of bloodwork back in 2008 for basically all that you listed though I hear even some of those things are hard to diagnose! Lyme, lupus, etc.... I do have a vitamin D deficiency that I learned of about a year ago. I was prescribed very high doses of vit D but of course I never took it!!! Don't ask why. I guess I never thought it was even that big of a deal, my result wasn't that low. It was my gynecologist that figured it out anyway.

Hmm....I'm just feeling so discouraged. The anxiety of not knowing what's going on is worse than the symptoms I experience. :-/

[suspiciouscombo]

Geez.... After reading your post I felt as though I was reading my history somewhat. There are some incredible cerebral minds here that I'm sure will add to this string.

Many of us can relate to your position. I'm still being told that my symptoms are too indicative of MS though a clear MRI. That said, I've also discovered what one neurologist does not see, another does.......

Just a little frustrating but know you are not alone in your journey to seek answers.

Ox

[rendean]

The low grade fever and muscle aches point more towards another autoimmune disease tha to MS, in my opinion.

Ren

[4happygnomes]

Hi Christine, your post got my attention because I too am out of the Minneapolis area and I did get a 3rd opinion from the Mayo just recently, however...I  am still in limbo with all things ruled out, totally presenting as having MS, but MRI's are clear so far.  Would love to know what clinic you are being seen at?

This is my take on the Mayo for your consideration:  It is far more expensive to be seen there, testing, MRI's etc are at least 1/3rd more in cost.  What I thought would happen, but didn't, is that they would consult with a team of doctors from different specialties to try and figure me out.  They didn't....I don't fit in their box...so on my way I go. =(  Parting words were that the nice thing is that if something else happens, they have a nice (big) file on me to refer back to.  I also have run into the fact that I've been seen at "The Mayo"...hard to find a doctor who will go against what their findings are.

On the positive of the Mayo:  It is impressively run, the staff was really nice, the Neurologists I saw were responsive to my concerns, and I was able to do a couple of video conferences with the Neurologist to avoid the commute.

Just my take on the Mayo.  I thought it would be my end all to be all, unfortunately it was not.  I pray you have better results.

I'm sorry you find yourself posting on this site, but the people on it are so helpful and knowledgeable, you are in the right spot!

Karen

[rendean]

Hi Christine!  

Welcome to our little corner of the world. I'm sorry to hear of all of symptoms. Some of my initial symptoms presented like yours as well. In particular the toes and cold feeling on various spots on my body, especially under stress. I saw 6 different neuros before I received a diagnosis since my MRI did not have classic signs of MS and the lesions present were attributed to migraines and/or hypertension and erroneously to Sjogrens sydrome , which is one of the many mimics of MS.

Have you had all the MS mimics rule out? B-12 deficiency, Sjogren's, lupus, vitaminD deficiency, and other autoimmune diseases other that a psotive ANA? MS is a diagnosis of exclusion. The Mayo clinic will rule out MS if you do not fir neatly into the McDonald criteria.

I did not fit into the criteria at the time if my diagnosis but do now. I had MS for 40 years before it progressed far even for a diagnosis. Even had zero O-bands and only a tiny elevation in my IgG from my LP. My lesions were not "round enough" and not in the right areas.

I have been lucky in not having had my progress too far before I found a neuro who based my diagnosis on my history and ruling out everything you can imagine!

I wish you luck in your search for an answer and hope the Mayo clinic can help you find an answer!

Ren

[ChristineK1]

I should also mention that I seem to always frequently run a low-grade fever 99-100 and have muscle and joint aches. This is pretty much always on going...separate from the three episodes I described above.

Thank you again! You are all wonderful!!