Strange Neuro Symptoms... MS?

Question

Hi everyone, I am new to posting on this so bear with me! I am 29 yrs old, with recent increasing "mysterious" neuro symptoms. For maybe 1-2 years, my legs would start to shake when I exerted myself physically. I noticed it getting worse and worse, and just always thought I was 'out of shape,' although I am only about 5"5 115 lbs. I went to an orthopedic dr last Aug for sciatica, which I had never had, and haphazardly mentioned this to the dr. At this point, and currently, whenever I bend over from the waist down, my legs shake uncontrollably in a rhythmic pattern. They continue when I stand up straight, and even happens if I am just standing a lot of the time now. She tested my reflexes, which were extrememly hyperreactive, and I had 3 beats of clonus in my ankles. The dr. immediately sent me for a brain MRI, which came back only showing a pineal gland cyst, and I subsequently had a full spinal MRI as well, with two hemangiomas, both NOT impinging on my spinal cord. I have been to a neurologist, endocrinologist, spine specialist, and everyone just looks at me and says "wow! that is not normal, something is wrong," but no one can seem to figure out what it is. When I walk down stairs, it feels as if I go spastic (like reflexes?) and I have fallen at work because of it. In the last 6 months or so, my left foot has been going numb and tingly on and off throughout the day, and I feel as if my visual acuity some days is so terrible, and other days better. I have no history of MS in my family, but this is what is in the back of everyone's mind when they examine me, although I know this is not a classic presentation. This past weekend, I was helping my husband paint his new office in the 90 degree heat, and after 1-2 hours the shaking was worse than ever before, to the point I had to be carried i was so unsteady. I feel increasingly nervous about what is going on, and have scoured the internet, with no luck finding anyone who has the symptoms I do. I have an appointment in two weeks with a new neurologist at Tufts Medical Center in Boston, who specializes in neuromuscular diagnosis. Any input would be appreciated!

StLePf7 · Answer

Hello again everyone, I am anxiously awaiting my appointment on Thursday.  I had something wierd happen to me about a week ago, and wanted to inquire whether or not this has actually ever happened to anyone WITH MS.  
For about 20-30 minutes, I completely lost my ability to distinguish right from left.  Now this happens to everyone in quick instances Im sure, however this was very different and very disconcerting.  
I was at the dentist, describing some jaw pain that I have, and I saw him writing R Jaw on the paper over and over.  I finally stopped him, and said that he was making a mistake.  Despite the fact that I was pointing to the Right, I was 100% sure it was my left.  I felt very embarassed, left the office and went outside, where i proceeded to try to figure this out.  I was staring down at my hands, saying right, left, right, left, however I soon realized I was wrong, as my wedding ring was tipping me off.  I was reversed still.  I got home, and my husband said raise your left hand, and again, I raised my right.  Hours later, I was no longer having this problem.  Whether or not this was some fluke, or related to WHATEVER is happening to my body, it was so eye opening and strange.  Just wondered if this is common or completely off in left field?
Thanks for your support everyone!

EJNILB · Answer

I had blurry vision in my left eye end of March. Went to an optometrist who diagnosed dry eyes and prescribed drops during the day and gel at night. This didn't help. Then I noticed the blurriness would get worse when I exercised. This had me curious so I consulted Dr. Google. I entered some combination of the words "blurry vision" + "one eye" + "worse with exercise" and my search yielded results that pointed mostly to optic neuritis. Of course, my research didn't stop there. When you research ON it invariably leads you to MS. I freaked out and called the eye doctor and insisted on a referral. 

At that point I was referred to a neuro-optomologist at Tufts. My appointment was the second week of April. The Dr. was great. She ran several tests which included everything you would get at a regular eye exam as well as light reaction test and VEP. I had a very slight delay in the affected eye on the VEP test so she ordered a head MRI. I had the MRI that weekend with a follow up the next week. The results showed a few small lesions in the brain and swelling of the optic nerve. She told me she couldn't diagnose me but the findings were consistent with MS. That's when I told her both feet were numb/tingly two years ago for a period of two weeks but it completely resolved. She said it sounded like RRMS and referred me to the MS specialist. 

My first appointment with the MS specialist was on May 13, 2013. He conducted a physical and cognitive exam and went over the results of the head MRI. I was diagnosed that day with the caveat he reserved the right to change his mind. Basically, he needed to run more labs to eliminate the usual suspects, i.e., lyme, syphilis, etc. which could mimic MS. He also ordered an MRI of the spine which I had on May 18, 2013. I returned on June 3, 2013 for the results of the labs and spinal MRI. There was nothing that would change his initial diagnosis. In fact, a spinal lesion and one in the brain stem reaffirmed his diagnosis. He ordered additional labs that day for the purpose of elimination certain treatment options, e.g., JCV+ may have eliminated Tysabri, elevated ALT may have eliminated Tecfidera, etc. I ended up choosing Tecfidera and have been taking it since June 20, 2013. Beyond some mild gasto issues early on I've had no problems with the treatment. Only time will tell on efficacy. 

As you can see, the process moved fairly quickly for me. Not everyone is so fortunate. Like I said, you are in good hands at Tufts.

StLePf7 · Answer

Thanks for the information Eric, it's good to know he's so thorough. Could you give me an idea of the testing and symptoms that led up to your ex from him, and how quick the process was?

EJNILB · Answer

Dr. Chavin is the MS specialist at Tufts. All of my appointments so far have been at least 2 hours and he's been very patient in answering all of my questions. He is very thorough. In fact, he's even called me late one evening from home after receiving labs to inform me of certain results. Try not to be intimidated and be sure to ask questions. Sometimes I write down questions I think of leading up to the appointment.

supermum_ms · Answer

I have read clonus can be normal but that doesn't seem to be true if it is adult onset. I'd still classify serotonin syndrome neurological, though i don't know much more than it can be a side effect of depression/anxiety medication. I found this that might shed some light on if this is another possible explanation http://www.medscape.com/viewarticle/776124  

I've read a lot over the years and this is an easy read on differential dx of clonus see......Atlas Of Neurologic Diagnosis And Treatment By R. Douglas Collins, online exerp on clonus see: http://books.google.com.au/books?

I have other sx's other than unilateral ankle clonus, i also have a lot of issues with medication tolerance, so its not being treated but there are treatment options you should speak to your dr about. I really couldn't say if bilateral is better to have than unilateral, though i'm sure it matters in what the possible dx will be

Cheers.......JJ

StLePf7 · Answer

Thanks for the input Eric, what is the MS specialists name at tufts?  I don't believe who I am seeing specializes solely in MS, his name is dr. Chavin? I get very intimidated by going to these appointments given that I have no imaging support, and drs with poor bedside manner tend to be dismissive as it is. Each appointment I go to seems to be so long in waiting and then is over in a flash with no answers. I find myself wishing they'd see something so at least I could start with moving forward. 

Kyle,
Thanks for the input. The sciatica only happened that once(pain), and with it came the full leg numbness, however a different sensation than I have now. Once she saw the other stuff, the sciatica was dismissed and not really addressed, but I didn't pursue it further bc it was an isolated incident

EJNILB · Answer

...good hands...I meant to say.

EJNILB · Answer

Hello! 

I, too, live in Massachusetts just 20 minutes North of Boston. I was diagnosed on 5/13 by the MS specialist at Tufts. He is very good. I have read some don't care for his bedside manner but I will take his knowledge and straight answers any day over personality. You are in good with that department. Hope everything works out for you. 

Eric

kwarendorf · Answer

Hi StLePf7 - 

I'm curious about the sciatica. Was it determined that you have some form of it? I've had it and a lot of the symptoms you describe could be caused by it. I got to the point where my legs would actually just give out underneath me. 

As to the MRI results, there are folks here who have been diagnosed with MS and have clear MRI's. It's the exception rather than the rule but it does happen. The other tests you mention are less definitive when it comes to diagnosing MS. 

LPs can only confirm that there is some inflammation in your central nervous system, not the source of the inflammation. Nerve conduction studies like EMG's and evoked potential tests can gauge nerve conductivity. Both are typically used to support Clinical and MRI findings. 

I think you're on the right path in seeing the specialist at Tufts. If he can't find an answer ask him for a referral to an MS specialist at Tufts.

Keep us posted :-)

Kyle

StLePf7 · Answer

Supermum_ms:
Do they give you any medications to help control the clonus so your are not having so much difficulty walking? Do you know if there is a possibility some people just HAVE clonus and hyperreflexia and it's "normal"? Is bilateral better than unilateral?

StLePf7 · Answer

Thanks everyone! If I didn't show any lesions on my MRI in nov, what is the likely time they would repeat? How quickly do the lesions pop up usually? 
Also I read more tests could include emg and lp? Would these be somewhat conclusive. Thanks for your support! Waiting for md appts is the worst.

supermum_ms · Answer

Hi and welcome to our little MS community,

MS isn't actually genetic, so because you don't have anyone in your family with MS, doesn't exclude MS from being 'one of the possibilities'. What stands out to me to make MS still a 'possibility' is, (a) your age and gender (b) sx's seemed to worsen when external and internal temperature increases (its called heat intollerance) (c) hyperreflex, clonus, visual issues and tingling are all sx's found in MS (d) no other condition found to explain your sx's.  

"Clonus is said to occur if there are sustained rhythmical contraction of muscles after a sudden stretch; it signifies the hypertonia of an upper motor neurone lesion. It may be present at the ankle or knee:

ankle clonus
thigh is externally rotated, knee is bent
the examiner dorsiflexes the foot - if clonus is present then there is recurrent ankle plantar flexion movement as long as the examiner retains the foot in dorsiflexion"

http://www.gpnotebook.co.uk/simplepage.cfm?ID=745209885&linkID=34660&cook=no

I know clonus well, I walk like a human string puppet :o) and i never would of thought it was possible if i wasn't experiencing it, truely weird. MS isn't the only causation so MS is just one of the possibilities but it is generally a sign that the issue is more than likely neurological. Until you do know what is causing your issues, id try to pace your self a little and try not get over heated if that does seem to make things worse but if you do, rest up and cool down. 

Let us know how you get on with the neurologist at Tufts Medical Center in Boston. 

Cheers.........JJ