Is this MS or Is it all in my head???

[hopeful38]

My question is aggrevating for many medical professionals as I have seen but I still need it answered.

I have had a Diagnosis of and treated for Migraines, Hashimoto's Thyroiditis, Chronic Pain Syndrome, Diffuse Myalgias, Chronic Sinusitus, Chronic Inflammatory Disease, Inflammation of the Circle of Willis, Muscle weakness, Bladder Failure, Inflammatory skin condition: Dermatomyotosis and Irritable Bowel Syndrome.

I have been ruled out by way of anBlood ANA test of Lyme, Graves, RA, Lupus etc.  Since 2004 I have been given medications to treat all these symptoms to no improvement. I have a few good months and about 6 straight bad months of severe muscle spasms, burning...I mean excrutiating burning  and stabbing pain in my legs and arms. Sometimes I fall alot and have a difficult time keeping my balance. I have been in the ER 6 times this year.  The Er Doctors tell me my MRI/CT comes out normal and it's basically all in my head.

Just for grins & giggles I had a MMPI (Psych Eval) performed which says I have PTSD (Post-Traumatic Stress Disorder) and Major Depression disorder.

Knowing all of this Why have the doctors been so reluctant in Diagnosing my problem?   and..
Why will the doctors not label all of these as contributing to the other or Specify that these are all symptoms of MS?

I have had one 3 doctors out of 12 that tell me unanimously that they can not RULE OUT MS, it is POSSIBLE MS, but they can not confirm until they see plaques on my MRI.

[essdipity]

Hi, Hopeful.  Glad to have you on the forum.

I can't imagine having so many diagnoses!  This really makes me wonder if your doctors have any clue what they're doing. Have the diagnoses come pretty much all at once? Have they come sequentially, some canceling out earlier ones? I'm thinking that you certainly have more than one thing going on, and maybe several, but it's highly unlikely that anyone would have 8 or 10 diseases simultaneously.

However, I do think that things like diffuse myalgias, bladder failure and muscle weakness are not diseases or diagnoses, but symptoms. Your doctors should be looking for one unifying cause for these. Sinus problems, hypothyroidism and migraines are well-understood and very treatable. These 3 have nothing to do with MS, although they can be seen in MS patients.

What is chronic inflammatory disease? I really know very little about the various inflammatory conditions you mention. They don't sound very specific, except for the IBS. The PTSD diagnosis may make sense to you, but only if you've suffered significant trauma. Have you?

I'm just trying to group these different things mentally, and to consider the tests you've had and what you've been told they show. Not an easy thing for me, since I'm no doctor.

So I have some basic questions. Do you have all your medical records of all tests you've had, and all the specialists' notes and comments? If not you need to starting assembling them all right away. I'm particularly interested in your MRI of the brain. You need the actual films or CD, and you need the radiology report. Everyone has white matter in the brain. Find out what was listed as wrong with yours.  

And also look specifically into the blood test results. I don't think an ANA test can eliminate everything you mention. As far as I know, it simply shows whether there is a large inflammatory process going on. From what you say there's lots of inflammation, so I don't see how we're farther ahead by an ANA test. But I'm most worried that you say that it has ruled out Lyme disease. That's a separate test entirely. There are various blood tests for Lyme, some of which are totally unreliable. You need the Western Blot test, ideally analyzed at two different labs.

The thing is, though of course I'm not a doctor, I can't help thinking that all the symptoms you have point to a system-wide disease, not a central nervous system one like MS. Can you post more about what they did to rule out Lyme, RA and lupus?

And now you have 3 neuros, all at the same place. Do they even talk to each other about your case? And what have they found wrong when doing comprehensive neuro exams? These take a good 30 minutes, sometimes more, so if they've made you walk a few steps, touch your nose, and it's all over in a few minutes, that's not what you need.

Well, I've given you many questions and a few layperson's ideas, and I hope they'll pay off somehow for you.

ess

[Lulu54]

It does sound like you have quite a lot going on and three neurologists at once?  Wow, how do you keep them straight? :-)  I wish I could speak to your symptoms but I am not well versed on the medical side of dxing MS.  Someone who is will be here  eventually to help out - in the meantime take care of yourself, and please do check back often.

My best to you, Lulu

[hopeful38]

I have seen my MRI, there is a white matter in the center of what I was told is the base of my brain, but I have yet to heard any Neuro call it a plaque relative to MS.  They have looked at my spine, there was nothing. I currently am seeing 3 Neurologist at Shands in Jax.Fl., One for Stroke/Mirgraine/blood vessels inflammation, the 2nd for muscle pain/spasm, the other for all other symptoms.

[OperaMBA]

I wouldn't know quite how to help you, but there are plenty on this site that are very knowledgeable and compassionate.

You should be able to find some of the answers that you are looking for on this board.

Richard
OperaMBA

[Amyloo]

I have a quick question:  have you seen or do you have your actual MRI reports yourself?  Any chance anyone has looked via MRI at your spine?  Have you seen a neurologist, specializing in MS?   Amy