Could there be a link between MS and Tuberous Sclerosis?

[Rhondajred]

I am a 38 year old female and I have recently been diagnosed with Tuberous Sclerosis through a DNA test which shows TS in my TSC2 gene. This makes sense as I had seizures growing up and I have a 13 year son diagnosed with TS at 1 year old with seizure disorder, brain tumors, and aspergers syndrome. His TS is also in the TSC2 gene.

Following the diagnosis I had an MRI which doesn't show TS in the brain, but, in fact,shows MS. I have many of the symptoms of MS, but I have to wait to have a second MRI to confirm. In the mean time, I am trying to find out if there is possibly a link between the two since they are both Sclerosis. Can you help me?

[MG (Admin)]

Ok...

Well you do NOT have MS if you do not have symptoms of MS.

A diagnosis of MS is NOT made on the basis of a brain MRI...rather it is made by what the doctors find by speaking to you and examining you...together with the investigations.

How was the diagnosis of MS made?

Could you attach a representative MRI picture?

[Rhondajred]

Thank you for responding so quickly!
I have not been officially diagnosed as of yet. I have been told MS is "probable" and am still in the testing phase. I have problems with my balance and coordination, severe tingling in my feet where they feel like they are waking up (but didn't fall asleep) throughout the day, and burning in my right foot and hand. I have pins and needles and tingling in my scalp, that sometimes works it way into my face. I have always had 20/20 vision and for the last year or so I have problems with the outer part of my vision everything appears to gray around the edges and my eyes twitch frequently throughout the day. My left eye does this thing lately where it moves back and forth very rapidly. Not very often, maybe a couple of times a week. Fast enough that I can see a line. I frequently have what feels like a ringing in my head, and sometimes my legs want to give out underneath me. And I have some mild memory loss and problems with concentration.
I am scheduled for more testing of my eyes with a specialist, and my dr wants to do a second mri in june to see if there are anymore "lesions" then there were previous.
Are you able to answer my question about a possible link between TS and MS? I am very curious.

[MG (Admin)]

When dealing with the diagnosis of MS, it is very important to remember the following clarification:-
"Alternative diagnoses must be considered. There must be no better explanation for the clinical picture"

Furthermore, some (but not all) of the abnormalities seen in a brain MRI in tuberous sclerosis (TS) may be similar to those that occur in MS.

In other words, if there is a possibility that the MRI of the brain is consistent with TS, then it is difficult to say that the brain abnormalities are not part of the TS.

If there are features (on examination, or testing) that are not consistent with TS, then the possibility of MS should be raised.

My advice is to get an answer to the following question:- "Are any of the features not compatible / unlikely to be compatible with TS"....if the answer is yes then further testing for MS / related conditions would probably be advised.

Hope that helps.

[Rhondajred]

After the TS diagnosis I had a brain MRI and chest CT. The chest CT found a Kidney cyst that "may or may not be related to TS" and something to do with the vertebrae and densities in the ribs that "may represent the extracranial skeletal features of TS" and an incidental finding of a 2cm gallstone. The brain mri shows hyperintense lesions that are "incidental findings, unrelated to TS and genetic testing". And I have confetti spots on my arms and some on my neck.
So my Dr tells me that I do not show TS in the brain, but in actuality, am showing probable MS. She tells me that the odds of having two diseases are so rare that she does not want to diagnose MS as of yet, as I explained earlier. She said if I had not already been diagnosed with TS, it would be easier to make a diagnosis of MS, but of course, we need to rule out everything else.
So, here I am. I have tried to research the possibility of a link myself, and have come up with nothing. The doctors I have asked so far are unable to answer either.

[MG (Admin)]

Have you had a lumbar puncture?

[Rhondajred]

I haven't. What does this do?

[MG (Admin)]

It can test for many things including oligoclonal bands which may signal inflammation of the type that occurs in MS.