Need guidance Re testing

[debbiec15]

Hi. I hope someone can answer me, even if it's to say "I don't know". It is very hard for me to type long periods and very discouraging when no one answers. I believe I may have MS. I have many symptoms now for over 4 years. Have seen many drs and specialists, and no one can work out what is wrong with me. I am 47 and my symptoms started a few weeks before I turned 43. It started with pain in my chest consistant with costocondritis (which is what I was dx with at the time) then after a week I had a chest pain typical of a heart attack, crushing and extremely painful. I was in constant pain with the costo for 4 mths before I found a medication that would ease the pain. But I never really recovered. I was constantly fatigued in the extreme, then after a few more months other symptoms started happening. Now, over 4 years later, I have fatigue, various muscle pain (aching and tearing mostly) numb skin over most of my body with some small patches on both lower legs, one thigh and one arm that are slightly swollen (the dr calls them lesions) and they are completely numb. I get head pain varying from slight to extreme (where it feels like my brain is going to explode) I have vertigo, tremors and muscle twitches and for a period was getting large spasms, but that has eased off since the dr gave me a course of steroids, blurred vision, fine flecking on both retinas that the opthamologist couldn't dx, a lot of neurological type pains, etc. The "heart attack" pain comes every few months, the most recent being just this week. I can't walk very far any more and I used to be able to run 10km before all this started. Anyhow, I feel that IF I have MS it would be the PP type(?) and if so, what tests should I get done to get a dx? I had an MRI over 2 years ago, and it did show a few whitish areas that the report said "may be ischemic gliotic change rather than demylination". Nothing showed in the cervical spine. I'm thinking to ask my dr if I can get a lumbar puncture done. IF it is PPMS and if I get a lumbar puncture done, is it likely to come back negative? Is there another test that may be more reliable? Any help would be appreciated. Thx

[HVAC]

Debbie
  I know what you are going through is hard I hope you get an ansswer soon.

Alex

[debbiec15]

Thanks Alex. The more you guys are telling me, the more I'm getting sure it's not MS either. I have only seen a neurologist once. That was over 2 years ago, and at that time she didn't think MS and didn't know what it was. She didn't order any tests but referred me to the infectious diseases dr. Oh sorry, she did order a blood test for meliodosis, as this all started about a month after we had had floods. (It's a disease you can get from flood water/mud). To get to a neurologist I have to travel by car for over 12 hours, so it's not like we can do it very easily. We have to overnight on the way there and back, and find accommodation down there too. Then after so much car time I'm absolutely exhausted and in even more pain for days, so it all gets very difficult. I really appreciate all the time and info you guys have shared. Thank you very, very much.

[HVAC]

Everyone wants a diagnosis to be validated. I am sorry it is taking awhile. You want to have a doctor say this is real. I have PPMS and what you describe is not PPMS. PPMS is so subtle you do not notice the symptoms until the point it shows up clearly on MRIs and LPS. My LP had 12 o-bands in the CSF and none in the blood. All my MRIs were classic for MS from the beginning.I did not go to a doctor with symptoms because they were subtle. My doctor found the MS when I had my yearly exam and she did a neurological exam which was abnormal.

Most people have had PPMS for awhile by the time they are diagnosed so the evidence is there.  I was diagnosed in 2009 and was diagnosed with PPMS in 2010 even though my case was classic. If I get knew symptoms they stay forever. I have them everyday. I had chest pains for two years and was blamed on MS it turned out to be a very rare cancer.

MS is not an easy diagnosis. The biggest part is the neurological exam which is reflexes and such. A doctor can tell where you have damage in the CNS. MRIs just show if the lesions look like MS. Then they have to see two different neurological attacks two different parts of the  the CNS at different times. Then MRIs, evoked potential tests, and LPs.

Have you been seeing the same neurologist for the four years? Many times they want to follow you over time. Is your neurologist saying it could be MS. I am sorry you do not have answers.

Alex

[debbiec15]

Thanks Kyle and JJ for all that info. I'm not hoping for an MS result, but in some ways it would be a relief. Me and my husband are simply at our wits end trying to find out what is wrong with me. I have been tested numerous times for all the auto immune diseases, but like everything else they always come back negative. The infectious diseases dr ran some tests for anything he could think of that I may have picked up as a child in Malaysia ( I was there from 3mths - 2yrs 3mths of age) that may have lain dormant for 40 years. Pleased to say I don't have TB or leprosy. I don't believe we have lyme in oz, but maybe something similar, but even so I have tested negative in australia to lyme on 3 different occasions. I just don't know where we go from here, and my drs have no idea either. They've just gone into a "let's wait and see if something drops off" mode. Thank you all so much for the info you've given me though. I think we'll go the LP route just to maybe rule MS as "more out" if nothing else. Then I just don't know what we do.

[supermum_ms]

Hi fellow Ozzie and welcome to our little MS community,

I have to agree, statistically PPMS is less likely and our stats in Australia are low population wise for MS to begin with, basically out of all the possible conditions that it could be, the likelihood of PPMS would be considerably quite low.

The most common type of MS would be RRMS (80%) and because you are saying it started with Costochondritis and continued without recovery, and the development of additional symptoms, that typically wouldn't be consistent with the pattern of RRMS. Adding the other points Kyle mentioned and i'd have to think that MS in general would be questionable, as a likely condition causing you all these issues....

"Costochondritis can be an independent condition by itself or sometimes can be a feature of a more widespread disorder. Examples of illnesses that can feature costochondritis include fibromyalgia, psoriatic arthritis, ankylosing spondylitis, reactive arthritis, rheumatoid arthritis, lupus, and inflammatory bowel disease (such as ulcerative colitis and Crohn's disease)."
http://www.medicinenet.com/costochondritis_and_tietze_syndrome/page3.htm

From what i understand chronic Costochondritis is often an indication of a Rheumatoid disease, there are around a 100 of different ones (eg Lupus, Connective tissue, Sjögren's Syndrome, Ankylosing Spondylitis etc ) and some of these conditions do cause similar symptoms to MS, so I would recommend getting the opinion from a good Rheumatologist. If the answer isn't forthcoming, id expect a Rheumy would be able to help narrow it down and probably arrange any referrals necessary.

Hope that helps in some way

Cheers...........JJ    

PS: this is a list of Rheumatoid diseases that might be worth looking into  https://www.arthritis-research.org/participate/rheumatic-diseases

[kwarendorf]

Hi Debbie - Welcome to the group.

Even though MS attacks the central nervous system, it tends to show up in specific areas rather than all over. MS interupts the flow of information between the central nervous system and the rest of the body. If the damage is along the pathway that transmits info to your left foot, you're likely to have left foot symptoms. If the attack occurs on your optic nerve you will likely have vision symptoms.

MS is a relatively rare diagnosis. currently about 2.3 million of the world's 7 billion have MS, that's 0.032%. Of those people with MS, only 15% willl be diagnosed with PPMS. That's 0.0049%. I think it is extremely unliiikely that you have PPMS

There is a list of tests that are run in various combinations in conjunction with diagnosing MS. None of these tests, alone or in any combination provide smoking gun proof of MS. There is no test to definitively diagnose MS. It is a clinical diagnosis, made by a neurologist who considers the results of various tests. The list includes MRI of the brain, c-spine & t-spine all done with and without contrast, blood tests to rule out MS mimics, lumbar puncture to look for inflammation in the CNS, nerve conduction studies, evoked potential tests and more.

In your case the radiologist seems to attribute the abnormalities in you MRI to eschemia (blood vessel issues) rather than demyelination, which is nerve related. I'm not sure what other tests you've had. I'm not a doctor, but from the sysmptoms you describe, and the MRI results, I think I would look for answers other than MS.

Kyle

[debbiec15]

Thanks for your info immisceo. There's a lot more going on that I didn't go into, and I've literally been blood tested and biosied for every disease known to man, but everything comes back negative. I still don't have my head around MS very much, but am trying to get info, as at the moment it seems to be the most likely cause. Do you know of any other test/s I could request that might help with a dx? Thanks again so much for taking the time to answer.

[immisceo]

You don't really get diagnosed with PPMS initially. PPMS is (currently) simply a category given to MS with no real remission. This can only be observed over time. It's usually a year at least for a neurologist to make the call.

Typically, we're all diagnosed with RRMS until time shows otherwise. As of yet, there's not really any initial testing that determines category and predicts the course of the disease from the outset. There's a lot still unknown about MS, but they're working on it.

What you mention doesn't really shout MS to me, but I'm just a patient. However, jumping to PPMS is not warranted, even if MS is on the table. An LP might provide more information, but it's not a make or break test. It's more of a way marker. They're negative for o-bands for some of us, though that's the minority.