mystery diagnosis

[AdrianneAlexis]

Hi All,

I'm just wondering if it's possible to have MS without any noticeable lesions on an MRI? Let me explain my medical history... About 9 weeks ago I woke up from a nap and my left leg, from my butt through my toes was completely numb and tingling and weak. I could barely move around, and couldn't put on pants or shoes without my husbands assistance. I should note that I did not have back pain associated with this. I slightly panicked, but googled a few things and chalked it up to being a herniated disc (I do hard workouts so I thought this wasn't a crazy idea). After a few days with no changes I went to the chiropractor who also guessed I had a herniated disc. He performed three weeks of treatment, and while my leg did improve a lot, I was stuck with this very tight band feeling around my knee and weakness, and still slight numbness and tingling in my foot and lower leg. I was having a hard time walking up and down stairs, and I cannot run because of weakness in my leg. My doctor ordered an MRI w/o contrast of my lumbar spine, and the results showed I had arthritis in my lumbar area. My doctor sent me to a neuro to evaluate the numbness.

I go to the neuro, and he tells me that this issue is not caused from arthritis and that while I did have arthritis, it was only mild. The neurologist also discovered hyperreflexia in my left leg and also clonus. He said these are indicative of a central nervous system issue and ordered an MRI of my brain, cervical spine, and thoracic spine with and w/o contrast and also an EMG. I just had my follow-up last week and my neuro said that nothing is showing up on the MRI to explain my symptoms (no lesions), but he is still concerned there is something wrong so he has referred me to a specialist at Cleveland Clinic.

I also should include in here that a year and a half ago I was having issues with vision going in and out caused by swollen optic nerves. My neuro-opth ordered an MRI at that time of my brain and spine and it showed nothing significant. I was diagnosed with pseudo-tumor cerebri (increase of cerebrospinal fluid for no known reason, putting pressure on my brain). Prior to this diagnosis I started randomly having issues with high blood pressure as well. I am only 27 years old, and am in good shape besides all of these random health issues.

SO, my question is, can you have MS and not have lesions show up on an MRI? Sorry for the long post, but I'm completely baffled by what is going on with me.

[ElliotB]

Welcome to TIMS. Yes, you can have MS and not have lesions. Keep in mind that there are about 400 illness that mimic the symptoms of MS. To complicate things even more, you can have lesions and no symptoms and still have MS. Hope you are feeling better soon.

[lyndacarol]

I'm just wondering if it's possible to have MS without any noticeable lesions on an MRI?

Welcome, AdrianneAlexis.

First of all, it is possible to have MS without any noticeable lesions on MRI. In my own case, I was diagnosed with MS 2 years after symptoms appeared and I had had numerous clear MRIs.

I am curious to know… When your symptoms began 9 weeks ago, did your GP or family doctor order a vitamin D blood test, called the "25-Hydroxy D"? If so, will you share the actual number result with us?

If this test has not been done, please request it from the next doctor you see (GP, neuro, or a specialist at Cleveland Clinic). Also, ask for your own copy of the test result so that you have the actual number.

Vitamin D deficiency (in fact, deficiency in many nutrients) is common among MS patients. In January, my vitamin D test result was 24 ng/mL (frankly deficient).

[gu1928]

Hi Adrianne
Your story is very similar to mine
I started my symptoms on my left leg too suddenly 3 years ago
Which worsened and now its both legs
Still have no answers with clear mri and clear spinal tap and clean emg
Like you I have tight band around my knees too with hyperreflexia of the knee tendons but no clonus and twitching all over body
I was deficient with B12 and D3
Both levels are normal now
As lynda said getting these two checked is very important
Did u get tested for lyme yet?
Where are u located?
Gul

[gu1928]

BTW I still do not have a diagnosis.my neuro says wait and watch

[gu1928]

Lyndacarol,

So after two years did lesions show up on your mri or were you diagnosed based on your symptoms

Gul

[Scott1]

Hi,

All this sounds familiar to me. I managed to get out of it but I started with a full-on big MS attack. That doesn't mean that is what you are heading for.

You mentioned it started in your "Butt" and traveled down the leg. It sounds like it was nerve related pain.

I'd go to a sport medicine doctor and ask to have a cortisone injection into the periformis (both of them but not at the same time). The periformis is a deep muscle in your backside responsible for external rotation of your hip. It either splits the sciatic nerve or the nerve splits it (can be either). If the muscle spasms, due to injury or poor oxygenation of blood flow, it can put pressure on the sciatic nerve itself leading to referred pain and spasms right down the leg.

In my case, I had the pain around the knee and down into a fleshy spot about a hands width below the knee. The knee, itself, felt like it was being constricted and pulled up the leg.

The tight periformis also pulls on the hamstrings and if your pelvis gets pulled out of alignment you will feel lower back pain.

If that's the problem then the injection will fix it but you need to stretch and strengthen it when it is released. My preference is to use pilates but there are many stretches shown on the internet. Be careful not to practice your mistakes. If you do see a Pilates instructor, then suggest the periformis may be tight, the psoas needs a stretch and the vastus lateralis may also be tight. You will need to do some "leg and footwork" exercises as well.

The ultimate question is why did this happen but you may never know and if it is released, you won't care.

Neurologists are clueless about this and most medical people assume it is rare, but the only thing that is rare is the diagnosis.

Regards,

[AdrianneAlexis]

Hi Everyone,

Sorry for the late response, I have been out of the country with little internet access.

I have not been tested for a vitamin deficiency yet, but thank you for that information. I will definitely mention it to my neurologist at my follow-up visit next week.

My neurologist got me into a specialist at University of Michigan who diagnosed me with Horner's syndrome. I had noticed my one eyelid was droopy but had wrote it off as being related to the pseudo tumor cerebri. He thinks it's related to whatever is going on. I sent him copies of my MRI's and he should receive them next week, so I'm hoping he can figure out what's going on.

As far as piriformis, does that also cause hyperreflexia and clonus?

[AdrianneAlexis]

Also, I have not been tested for Lyme. I live in Northwest Ohio, about 20 minutes from the Michigan border. About 3 weeks before this happened I was in Mexico and had really horrible food poisoning for almost a full week, so I also wondered if it had to do with that, but my doctor didn't really seem to think that was related at all.

[Scott1]

Hi,

Clonus fits into two broad camps. Fatigable and unfatigable. The arbiter of which broad classification you're in is time. About 10 seconds is enough time to observe. It is a type of hyperreflexia and is regarded as spams that are neurological in origin. Don't overthink the neurological context.

I had the unfatigable variety. If your limb is in a particular position and the treating practioner says "Ok' relax...you can relax...just relax now" and you say "I am relaxed" and wonder what they are talking about. Then it's probably unfatigable. If you just drop your leg when the say "Relax" it's probably fatigable.

The nerves that are probably impinged either way usually relate to a pathway coming from the hip. That's why I suggested getting the periformis released. That muscle can crush the sciatic nerve which travels down the leg.

The hip muscles are complex and you need them all moving freely so your pelvis doesn't get pulled out of alignment. If it is not related to that and is purely muscular around the calf then you need to increase your magnesium intake and look at ways to improve your vasodilation so you get a better oxygenated blood flow to the muscle.

In either case, tight muscles are actually weak and your body can learn to rely on the tightness to get you around. If you manage to release it then the weakness is exposed and you almost feel like you have gone backwards. The answer is to do exercises to strengthen the muscles eccentrically (i.e. In the lengthened state). I prefer Pilates to do that and that's why ballet companies make it part of their warm up routines. If you think a tablet or injection will fix it and you don't need eccentric muscle exercises then you will never recover.

If you had a bad illness in Mexico, then look to reset your gut. Use a probiotic (forever is about long enough) and ideally have the Lactobacillus rhamnosus strain in it. That's the variety that is being used to treat Peanut allergies in recent trials so it is clearly a modulator of inflammation.

Travellers bugs can take a long time to clear. If you find you have a cyclical recurrence then you have a problem and should be tested, treated with appropriate antibotics and keep using probiotics. You don't need sources of inflammation periodically wearing you down.

Hope that helps.

Regards,

[lyndacarol]

Lyndacarol,

So after two years did lesions show up on your mri or were you diagnosed based on your symptoms

Gul

I have not been ignoring your question. My computer has had serious problems and it's been in the repair shop quite a while.

Yes, after two years (and three clear MRIs) lesions appeared on my fourth MRI. I was then diagnosed with MS based on my symptoms and the MRI, which showed lesions. I have never had a lumbar puncture (it is my understanding that doctors are moving away from LP since the advent of MRIs).

[AdrianneAlexis]

Hi Everyone,

It's been a while since I've written on here but I thought I would update that I have finally have gotten a diagnosis, which is transverse myelitis. I'm just relieved to no longer have a mystery diagnosis.

[jimmylegs]

hi good to hear you've been able to reach some conclusions.

on the ddx list for TM i see copper, b12 and folate status listed.
http://bestpractice.bmj.com/best-practi ... ntial.html

curious if you have the results for those tests on hand? had you followed up on any other testing related to nutrient status?

you mentioned doing hard workouts. had any of your docs referred you to a sports dietitian or similar? if you're interested in making sure you're topped up on essential micronutrients to match your level of activity, here is a link to earlier forum posts re athletic nutrient depletion http://bit.ly/2lnHlR6 and one more i don't think i've posted before

Position of the Academy of Nutrition and Dietetics, Dietitians of Canada, and the American College of Sports Medicine: Nutrition and Athletic Performance
http://www.andjrnl.org/article/S2212-2672(15%2901802-X/abstract
It is the position of the Academy of Nutrition and Dietetics (Academy), Dietitians of Canada (DC), and the American College of Sports Medicine (ACSM) that the performance of, and recovery from, sporting activities are enhanced by well-chosen nutrition strategies. These organizations provide guidelines for the appropriate type, amount, and timing of intake of food, fluids, and supplements to promote optimal health and performance across different scenarios of training and competitive sport. This position paper was prepared for members of the Academy, DC, and ACSM, other professional associations, government agencies, industry, and the public. It outlines the Academy’s, DC’s, and ACSM’s stance on nutrition factors that have been determined to influence athletic performance and emerging trends in the field of sports nutrition. Athletes should be referred to a registered dietitian nutritionist for a personalized nutrition plan. In the United States and in Canada, the Certified Specialist in Sports Dietetics is a registered dietitian nutritionist and a credentialed sports nutrition expert.