This is going to sound crazy, but is it really MS?
 

I was given another diagnosis today concerning myback. I have to disagree with the doc on this one. He claims Schuermann's Disease. Which is a curvature of the spine. But he tells me that my Xrays show my spine is not curved. Makes no sense. He also claims my back is not broken and the Schmorl's nodes are from the Schuermanns. And he tells me he does not think there was a fracture to begin with. So how the heck did the Disc magically appear inside of the bone if the bone never broke?!?!?

Upon researching all of this hubbub... I discovered that one cause of the Schmorls nodes could be thyroid related. Prior to MS dx, I was given a Graves Disease dx. Thyroid was killed and then came back to life and is hyperactive again.

Then it was MS which has since turned to PPMS. + Graves+ Bipolar+ Degenerative Joint+ Degenerative Disc+ Neurogenic Bladder + Possible Schuermanns +??

I have to question if it is possible at 30 yrs old for my body to have so many things going on at once or if the doctors are missing something. I am wondering if it really is all of these things or if it could be a simple answer of one thing that is actually wrong with me that makes all of these other things pop up.

Am I crazy?

I would be questioning, too. Is there any possibility of you going to a place like Mayo where they could take all of your records and go through everything with their whole team?

Right now I am dealing with all of the other stuff. I think it may be time to contactjohns hopkins again and see about getting at least another opinion

sometimes when MDs dont know...they start guessing. I wish they would just say "I dont know, let me get you set up with..." and leave it at that. Instead, they either accuse you of drug seeking, or wanting disability to lazy about at home, or they start tagging fancy labels on you. Sometimes when you hear hoof beats in the distance, it really is just plain old horses!

The medical community has made me really mad over the years. They dont read ALL the test results. They dont read ALL the blood work results. They see the top ten of things and start making guesses.

I would go to a specialty place if I were you to just get some straight answers. It is possible to have several diseases at once, but when you start packing rare ontop of rare you have to wonder.

In reality, to be 30 and have some of those dx wouldn't be "rare." Graves disease hits people of all ages. In my SIL's family 3 of them were diagnosed with it in their 20s. Degenerative disc/joint disease can happen in young people - I was dx with a mild case when I was in my 30s. We have a friend that is only 23 and has a severe case of DDD and DJD. DDD can cause neurogenic bladder issues as well as bowel issues.

MS is solely based on clinical observation and a few tests. Some neuros, like the one that dx me, did not go by the MRI alone as lesions can be caused by many other things including viruses and migraines. At that time, I did not have any clinical symptoms of MS and didn't for a couple of years.

Bi-polar can be a little subjective. It all depends on the psychiatrist. A good neuropsychiatrist would be helpful as they have a better understanding of the neurological component and effects on behavior. But the way the drs have been treating you and all you have going on, I'd be a little bi-polar too. :D j/k

But, I would question the Schuermann's Disease since he could not see a curve on the X-ray. DDD can cause Schuermann's but if the curve isn't there . . .well . . .

I think for you, finding a good PCP who will be the gatekeeper of what is going on with you is going to be the most helpful. Find a PCP who doesn't sugar coat things, really takes a look at the whole picture, and will fight for you.:hug:

Hang in there! And let us know how you are doing.:hug:

legz- my first question is what your brain mri's look like.
2nd is doppler the jugulars (with Zamboni's software if avail). Thanks to Lady on that tip.
Spine - Mine's curved & compressed so bad. I wish they could xray it sitting in wheelchair. Surely spine's curved more when weight bearing.

Legz, I was diagnosed with Scheurmanns Disease in my back a few months ago after complaining of ongoing back pain and having MRI scans / x-rays.

The Orthopaedic Doctor I saw told me that you can have Scheurmanns without curvature of the spine (I have both). He said that Scheurmanns is where the discs in your back herniate, so it doesn't always have a known curvature. He was pretty clueless though and told me that it didn't cause back pain at all so he didn't know why I had it :rolleyes:. Went home and found out that the major symptom of it is chronic back pain - go figure lol!

I was told as far as the Scheurmanns is concerned they can't do much. Mums requested a second opinion though and I have an hospital appointment about it next week so i'm hopefully they'll come up with a treatment plan.

I'm not sure about the MS as I don't have it but i'd definiately get a second opinion!

Feel better soon!

True Ali. :) Nice to see you here every now and then. We miss you, but understand you have other concerns at this point. I hope you, your Mum and Dad, and family are doing well. I'm sorry to hear that back pain has been added to your mix.

I'm glad your not 12 years old anymore. All of us on here worried about you my dear one. Be well and I hope you get the help you need too. :grouphug:

Ali- I am not sure how a herniated disc can not cause pain. That makes about as much sense as the doc telling me the discs had gone inside of the bones but the bones were never broken...so how did over 50% of the disc magically appear INSIDE of the bone doc?

I think all of my doctors are insane. This is my new opinion. I was tols as far as the Scheurmanns, all they could do was wait until it got worse and then insert screws into the spine to try to straighten it out.

Please keep us informed on any new ideas you get from the second opinion. :hug:

Eddie- Brain MRI's are not too bad. The majority of my lesions are in my cervical spine, there are a few in my brain and a few in other areas, at last count there were 37 total that were over 50MM in size. I seem to fit the classic profile for PPMS, no inflammation, IVSM does nothing for me, and my first "flare" neve remitted and it's been 2 years. They did scan my jugular veins at some point but they were normal in size and shape. I don't think I would be a good candidate for CCSVI.