I keep coming back to MS....

Hello all in this forum :) I have posted in a couple of other places... still getting to grips with it all.

I am a 31 yr old female from the UK who was diagnosed with ME/Chronic Fatigue Syndrome a couple of years ago.

It's never sat right with me and I pushed for more tests and this year I found out I have Hashimoto's disease, which has caused hypothyroidism. I am on treatment for that currently and am under a very good thryoid specialist (that I found through extensive research on the internet!) so I have no worries on that side of things.

Last October I had a 'funny turn' after taking some antidepressants.

My right side went numb, from head to toe, after what I now know to be an aura migraine. I couldn't speak properly and couldn't move my right side for a few minutes - called an ambulance, they were satisfied it wasn't a stroke as the mobility returned not long after.

I stopped the meds and went to my doctor. After a while the numbness began to return here and there until eventually it was there all the time - it's not truly numb but an altered sense of sensations and temperature. It was all confinded to the right side of my body (even inside my mouth and nose) but more recently it's migrating to my left as well, usually in my cheek and arm.

I have had countless blood tests (all that shows is the thyroid problem and occassionally a raised ESR) CT scan at the hospital, and seen two neurologist with MRIs of the brain only each time.

I have a lot of the classic MS symptoms I have read about but a lot of these also fit with hypothyroidism too - some things have improved in small amount since being on thyroid meds but the brain fog, dizziness and fatigue persist to a level so badly that I usually cannot leave the house.

My question is... would lesions on the spinal cord cause the symptoms I have from head to toe on the right as nothing shows in my brain scans? My doctor suggested after I try another switch in thyroid meds (which I don't anticipate will work to be honest) that I be refered back to a neurologist.

Should I insist on further tests?

Thank you in advance.

[ChickenBoo]

If anyone has any thoughts on this I would be really grateful :) Thanks

[Udkas]

Hi Cindy,
I am sorry that nobody has replied yet.  There are some very smart people on this forum, hopefully someone will come along and post soon that might be of help to you. Quix our den mum, is a retired pedeatrician who also has MS.. sorry Quix, I can't spell the peadiatricain, ....

I know very little about hypothyroidism either,

In my very limited capacity about these things and I will stand to be corrected spinal cord lesions usually affect the area below the lesion, so for you to have symptoms from head to toe it would be unlikely to be from a cord lesion?  but I am not a Dr and I might be wrong, I think with symptoms like you are describing you should be seeking a neurologist again...
Best wishes with it all, and do keep up posted.
Udkas.
P.S. there is a section on spinal cord lesions in the health pages, top right hand icon on the top of this page and some other great info on MS.

[shermay]

Hi there,

You need an MRI of the spine to rule out any lesions there.

So if you want to rest easy and not have this dx of MS I would go or another MRI to rule out MS.  Reading on the internet is not always a good place to start, you need to have postive proof.  Second guessing on the Internet could lead you to believe that you could have a bunch of problems.

Get a spine MRI, that would be my course of action.

Debs

[Weakandfalling]

Hi, Cindy,

Welcome to the not-so-wonderful world of diagnostic limbo!  I can fully empathize with what you're going through.  And I'm also hypothyroid.  Many feel that the "holy TSH" is not really that valid an indicator when it comes to hypothyroidism.  Many with a "normal" TSH can still be quite hypothyroid.  Monitoring your basal temperature first thing in the morning can better tell you where you stand.  

Anyway, regarding your question.  I am not one of the "experts" here, but I will quote from an expert - Quixotic1 - who wrote:  ". . . numbness, paresthesias, or weakness from one level on down is indicative of a cord lesion . . . specific areas of numbness and paresthesias."  That sounds like your symptoms doesn't it?

I don't know how old you are, but if you are beyond the medically-sanctioned ages of MS onset (20-40), you really, really do need to have MRIs of the spine done because in us older folke it seems like the spine is where MS lesions are often to be found.  Also, the neuros tend to write off any brain lesions that show up in on our brain MRIs as "UBOs (unidentified bright objects)" which they will tell us are "normal for our age" or they'll call them  "microvascular disease" which is "normal with aging," or some other "nonspecific finding" blah, blah, blah.   It's harder for the neuros to write off  spinal lesions - because spinal lesions are not known to be due to age.

Also, I encourage you to have the spinal MRIs done just because that is necessary for a complete MRI investigation into possible MS.  Again, Quixotic1 concludes that "the whole CNS needs to be looked at as a baseline for anyone whose symptoms highly suggest MS."    

Most neuros only order brain MRI (and maybe cervical spine too) when making an MS inquiry - but the thoracic spine also needs to be imaged!!  Neuros may not order the full inquiry due to insurance companies' wanting to keep costs down.  

But I recommend getting the spinal MRIs done and you MUST get them done on an MRI with a 3-Tesla magnet.  This is very important!  Facilities like to keep their MRI magnet strength a secret (if it is less than 3-Tesla) but you can get that information if you persist.  It is especially important to have your spinal MRI done on a 3-Tesla because that has twice the magnet strength of a 1.5 Tesla and you need more power to find spinal cord lesions because of the things interfering with the picture such as reflection from the spinal fluid, the need to penetrate the spinal column, etc.

I wish my neuro 5 years ago had ordered spinal films!  Even if your spinal films don't show anything, it will resolve the nagging question in your mind that there could possibly be lesions there.  And maybe it will cinch your diagnosis!

Good luck getting out of limboland - I feel like my feet are in tar or quicksand here - pretty hard to get out - but it is possible!!  Don't give up!!  Push for the full spine films (cervical and thoracic) on a 3 Tesla and keep us posted!!

Hugs!

WAF

[ChickenBoo]

Hey everyone, many thanks for all your comments.

I really appreciate it. I think you're all right that I have to push for further testing at my next neuro appointment (if it comes to that).

I am trialling a change of thyroid medication currently so I will have to wait on that (be it good or bad) before I can move on to the next step (seeing neuro number 3).

Weakandfalling - my TSH is a low as I can get it without it being off the scale (0.04) so add that to a very good free T4 and free T3 I am disappointed to still have many hypo symptoms.

Thanks again everyone, will update as and when it comes to it.

CindyCB.

[sllowe]

Hi there,

Sorry to chime in so late.  I have no personal experience with the disease but many write ups on it I can relate to. As a mimics it can line up quite perfectly with MS symptoms. My neighbor has it and her and I have had quite comparible problems over the years.

I hope the change in thyroid meds help with some of the problems you are experiencing.

Feel well,
shell