Aa
Aa
A
A
A
Close
Avatar universal

I'm sure I have MS or something similar, what do I say to my neurologist?

Hi all, I'm a 21 year old female with a long list of health problems and no answers. First of all, my grandmother was diagnosed with MS, and my aunt and mother have similar problems as well, so it runs in the family.

For at least 5 years, my condition has been slowly deteriorating. I had tests done on my heart, lots and lots and lots of bloodwork (including for lupus), and a CT scan, and everything always comes up normal. I recently started seeing a neurologist, and told him all of my symptoms. I have difficulty walking, dizziness, fatigue, memory problems, poor balance and coordination, shortness of breath with little exertion, sensitivity to heat, twitches/spasms, and numbness, weakness, and pain in a variety of places. One significant incident I had last year was when I woke up and the entire left side of my body was numb or in pain, and I was barely able to move. Months later, I found myself unable to walk, I was extremely weak, my hands were moving off from where I intended them to, my vision was blurry, and my words were slow and slurred and incomplete. My experience with my grandmother and my own personal research pointed me towards MS, or something very similar.

My neurologist ordered a VER/VEP (which was normal) and an MRI of my head and neck. Nothing came up except for a small white dot in my spine. It's 1.5mm big, and he said it was too small to be symptomatic. He was totally lost on what it could be after just that, and I don't understand why he didn't think to look for other things that could be causing my symptoms. Instead, he focused solely on the fact that I have an abnormal gait and weak legs, and had me bend over to check for scoliosis. He found a lipoma on my back (which has been there since 2014) and immediately started ordering tests for diastomyelia. He said several times that it must have been there since I was born, and that "it's been there as long as you can remember, right?" But that's wrong. It's only been there for a few years, and I asked my mother and grandmother who both said I wasn't born with it. There was never a bump on my back. He didn't listen though, and has ordered a new MRI of my spine.

The thing is, I'm not convinced that it's not MS, and I'm absolutely certain it's not diastomyelia. For one thing, it doesn't cover over half of the symptoms I'm experiencing. My next MRI has been scheduled for this Saturday, and I'm supposed to have a follow-up with him after, but I have very little money left and no ability to work. I don't want to waste my time and savings. What can or should I do? I want to talk to him again, I don't want him to give up on MS or not even consider other disorders that may look like it.
1 Responses
Sort by: Helpful Oldest Newest
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

IF there is a genetic component behind all this with your Grandmother, aunt, mother and your self (3 generations) all experiencing similar medical issues, MS wouldn't actually be a more likely explanation because MS doesn't typically run in families, it can but it's more common to be the only person in your family with MS.

Theoretically your grandmother being diagnosed with MS wouldn't really increase the likelyhood of you, the granddaughter having MS. Your mother and aunt not having been diagnosed with MS, and the risk reducing with each generation further away from the diagnosed MSer, your odds of having MS are low...

"Lifetime risk of MS by relationship to someone with MS:

Identical twin - 1 in 5
Non-identical twin - 1 in 22
Other brothers or sisters - 1 in 37
Parent - 1 in 67
Child - 1 in 48
Relatives that were less closely related had a lower risk.
The lifetime risk in the general population is about 1 in 330"
https://www.mstrust.org.uk/a-z/risk-developing-ms

Unfortunately, the test evidence so far hasn't pointed towards any specific medical condition and or been more suggestive of your diagnosis yet, it's probably going to take time and a lot more tests before your neurologist will be able to work out what is causing your issues. If your fiances and or insurance situation is limited, i would suggest you speak to your neurologist about your financial situation and make it crystal clear you don't have enough savings to pay for any test unless he strongly believes that test is very necessary.

I would suggest you could mention that you followed up on his question on if the lipoma was there since birth, saying you asked your mother and grandmother if the lipoma was something you were born with and both are positive it wasn't there, reiterating that you have only been aware of it since 2014.....keep in mind though that whilst lipoma's are common isolated benign growths that can develop at any age, lipoma's have been associated with diastomyelia so it's not completely out of left field for your neuro to be following the possibility of those test results leading towards some answers.

It's usually not recommend you even try to get any neurologist to focus specifically on MS because of the mental health mind field you can inadvertently fall into if you do.....MS is a disease that affects the central nervous system, truthfully there isn't many symptoms associated with MS that isn't found in many other conditions, neurological or not, so it genuinely might not be a neurological condition like MS.

You've been experiencing more and more medical issues since you were 16, 'IF' this was all being caused by demyelinating lesions (MS) you'd be expected to have a number of brain and or spinal cord lesions to at least corroborate some of it, 1.5mm is a very tiny lesion and alone it can't explain all the different types of symptoms you've mentioned experiencing. MS wouldn't be at the top of the potential causes list because of the missing (demyelinating) lesions, your neurologist is probably looking for anything other than lesion related conditions that could explain your abnormal neurological clinical signs ("abnormal gait and weak legs").

It would be in your best interest to keep an open minded to the causation at this stage, there are many other possible explanations that do cause the same or similar issues as MS eg Chari malformation so focusing on any one medical condition may in the end not end up being helpful....one step at a time.

Hope that helps......JJ    
    
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease