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Neuro says I don't present as typical MS but I don't know what else it could be.

Hello.  I am 44 year old female with previous medical history of Hashimoto's.  5 months ago I had pressure headache, ringing ears, dizziness, sudden depression, and some problems thinking for about 2 weeks.  After that I had weird and brief daily headaches in a small area in one part of my brain.  Now, the headaches have gone, but I have tingling/vibrating feeling in lower legs, muscle twitching/fasciculations mainly in legs, a tight cramping feeling in calves, and bilateral leg weakness.  I have had vitamin labs run and other bloodwork that's all come back normal.  Brain MRI showed 2 small lesions in white matter.  Spinal MRI showed nothing.  The neurologist said I don't present as typical MS.  I guess because I don't have vision or balance issues.  What I am worried about is the atypical presentation.  He is not ready to do lumbar puncture yet as he says it's unnecessary.  Where should I go from here?  I have never had anxiety before but of course now I do, due to my current situation, but I'm sure my symptoms are not due to anxiety.  Thank you for any insight or suggestions.    
3 Responses
987762 tn?1331027953
A lumber puncture can be useful 'additional' diagnostic evidence in the assessment of MS if there isn't enough MS suggestive-consistent abnormal clinical signs, brain and spinal MRI's etc etc to diagnose but an LP would definitely be an unnecessary invasive test to go through if there isn't any neurologically related abnormal diagnostic evidence at all, which is what i think your saying.

You mention "The neurologist said I don't present as typical MS.  I guess because I don't have vision or balance issues.  What I am worried about is the atypical presentation."......whilst it is very common to present with visual or balance issues, there is a lot more to what's untypical for MS than just the types of symptoms you began with....

5 months ago this started with a "pressure headache, ringing ears, dizziness, sudden depression, and some problems thinking for about 2 weeks" which are all really common types of symptoms and are more likely to be caused by something totally unrelated to a neurological condition like MS.

You don't say if there was a period of normal or if what you experienced next "brief daily headaches in a small area" happened immediately upon the above symptoms finishing which again would be more likely caused by something totally unrelated to a neurological condition like MS.

When your symptoms completely changed and became "tingling/vibrating feeling in lower legs, muscle twitching/fasciculations mainly in legs, a tight cramping feeling in calves, and bilateral leg weakness." was there a period of normal or did it happen immediately upon the weird brief headaches ending. It makes a difference in MS if the symptom pattern completely remitted before experiencing something else or if the symptoms were immediately replaced by something else or if the symptoms once began continued to worsen etc etc  

MS typically presents 'unilaterally' (in other words in one side of the body) and whilst MS can present bilaterally it is rare for a spinal cord lesion to be big enough to transverse the cord but it is possible. Keep in mind your spinal MRI as well as your brain MRI was absolutely normal so it's not just that the types of symptoms you've experienced are not how MS typically presents, the bigger issues is the lack of any objective diagnostic evidence that is consistent or suggestive that makes it very unlikely for these issues your experiencing to be caused by a neurological condition like MS.

You may never have experienced anxiety before and your symptoms may not be mental health related but regardless IF you are experiencing anxiety it is always in your best interest to be proactive about obtaining professional support and a mental health assessment from a psychologist or psychiatrist!

Hope that helps........JJ
(MS community leader)    

6 Comments
Thank you so much for your response.  There was a time with no symptoms between the headaches and the leg tingling.  Also forgot to mention I had the vibrating leg thing in one leg about a year ago, my forearm tingling for about a week then subsided, and an episode of 2-day dizziness about 1 1/2 years ago.  Those episodes resolved with about 6 months between each.  The brain MRI did show 2 small white matter lesions.  I know these can be due to migraines or high blood pressure, but I don't get migraines and my BP has always been low.  I have been reading about other peoples' experiences and found that some have had bilateral presentation although I guess it is rare.  Thank you for your re-assurance.  I have an appt with a psychologist but I really think any anxiety I have is secondary to the physical symptoms and not the cause of the symptoms.  I am going to ask for the LP anyway and also ask if they can run a Lyme test from the LP to knock out both at the same time.  Thank you again for the information.  
Your welcome, btw it's said that for every decade of life it's not abnormal to have 1 small ischemic white matter lesion, and if you ever smoke(ed), have an associated medical condition ie hypertension, migraine headaches etc your more susceptible and likely to develop even more, so if only 2 small non specific lesions were on your brain MRI then they're unlikely to be related to a medical condition and not abnormal.

You may not quite be understanding the way lesion damage works but what you've probably missed whilst reading MS stories is that for your bilateral lower leg issues to be from a neurological condition like MS, you need to have either one very large spinal cord lesion (see transverse myelitis) or more than one smaller MS cord lesions develop during an attack so that together they traverse the cord to present with bilateral symptoms in your peripheral limbs.

Of course there are many other medical situations that can also cause the same and or similar symptoms to what are commonly associated with MS and sometimes it really is in your best interest to look more thoroughly into the alternative explanations when you don"t have brain and or spinal cord lesions, simply because the likelihood of it being a neurological condition like MS becomes extremely unlikely without the brain and or spinal cord lesions, Multiple Sclerosis literally means many scars....

Hope that helps......JJ

ps i have heard that thyroid issues can sometimes mimic some of the MS symptoms so that might be worth considering with your medical history.  
  
Thank you so much again.  Your responses do help me understand better.  Otherwise I dwell on it and become anxious.  I understand about the transverse lesions etc.. and it makes me feel a little more hopeful, but then I'll read someone else's story about bilateral symptoms and I think maybe the MRI missed something or maybe there's something in the lumbar region that got missed (he only took MRI of cervical and thoracic).  Sometimes I've heard lesions don't show up right away in the beginning.  Mainly I'm frustrated because it seems the neurologist wants to wait and see, because I guess he wants to see more of a pattern.  And I just want to know what it is, if it's not MS.    
Anyway, I have an appointment on Monday with a nurse practitioner at an MS clinic.  If she is not concerned I will have to let it go.  
I might be completely wrong here but Sometimes magnesium deficiency or severe electrolyte loss causes similar problems in my legs. Dehydration in muscles puts extra stress on nerves causing the issues.
After hydration we need stretching exercises to get rid of the muscle twitching, cramps and various aches and pains. I have frequent headaches/migraines too but that’s due to the muscles in the neck and sinus issues. Regular exercise and hydration keep the pains away. Just a suggestion.
PS: I’m 40.... so in the same age range.
Thank you, that's a good point.  It does feel like the muscle cramps I would get with dehydration but I'm very well hydrated, had my electrolytes checked as well as magnesium, B12, D, things like that, and all of it was normal.  
Avatar universal
I sought help with a neurologist for vibrating. My entire body and everywhere I went was the same. He tested me for MS as vibrating is one of the hallmark symptoms. He actually found me to have had Multiple Myeloma. I am cancer free today having had an autologous Stem Cell Transplant. Now, I have Myasthenia Gravis. I was suffering severe back pain (like a slipped/pinched disk) and was getting an epidural injection every 3 months. Finally, I remembered a drug my patients with Myasthenia Gravis had taken and asked my neurologist for it. Baclofen, and it has changed my life! My back pain is essentially gone! It wouldn't hurt to just "try" it!
1 Comments
Okay I'll keep in mind.  Thanks.
Avatar universal
What were the b12 levels in your labs?  Something somewhat similar happened to me and it turned out to be a severe b12 deficiency.  My b12 was showing in range, although at the low end, so no one picked up on it.  I finally found a neurologist  who diagnosed me with pernicious anemia and prescribed b12 injections weekly. I felt worse for the first month as my body adjusted to all the functions I had been going without but my symptoms soon dissipated and I am now symptom free.  I don’t know where I would be without that diagnosis as the symptoms were progressing quickly and my quality of life was very poor.
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