Could it be MS? Could there finally be an answer?

[psmith90]

I am a 38 year old female that has been "sick" now for over four years. My symptoms started as near as I can remeber with fatigue, weakness, a trip tp the ER for what the said was vertigo. I have had several flares that will last for a little while (weeks or months) and seemed for a while to respond to steroid taper packs. Now since january the flare seems to be here to stay. I spend most days off work in bed and wake up in so much joint pain that I can no longer walk to the bathroom for pain medication that i take an hour before I try to get my son up for school. I have to get it ready and keep it in the drawer next to the bed. My PCP figured it was auto immune related and continued to see me over and over again for different symptoms. Constant muscle spasms, Uncontrollable reflux, Numbness in all fingers and toes, Reynauds, Dysphagia to the point that I lost 10 lbs, B-12 deficiency, anemia, high calcium levels, fatigue, memory loss, colon pollops, IBS, one trip to the ER showed elevated D-Dimer levels indicating blood clots, heart palpitations, 2 unexplained rashes (I have never had rashes or allergic reactions to anything). i went to see a rheumatologist who initially diagnosed fibromyalgia and multiarticular arthralgia but did not belive that I had Rheumatoid Arthritis. He ran a new test called the anti-ccp which originally came back negative and then subequently came back Moderate to high for confirmation of RA. My next test was back to the normal range but he initially said that once it showed up you cannot go back. I am so confused. He said it was negative, then positive, then negative, then suggested chemotherapy drugs. I then went to see my neurologist who by his own admitance had no experience in much other than ADD. He diagnosed me with Epstein-Barr, and I have started seeing another neurologist. My PCP fully prepared him for my visit and he announced that he had never read my file but that I should go ahead with planned anterior fusion and discectomy on the C4-C7 levels and come back afterward to see if this had solved my problems. Well it has not and now he has run some electromuscular type testing that I am not sure how I scored and just completed MRI's on my lumbar and thorasic spine and brain. I got my reports and have a follow up to see him (I am sure that he will try and explain something but these reports do not appear to have lesions) and my PCP and I believed he was looking for MS as the clinical indication stated Demyelinating disease and myelopathy. I have much more detail in the form of blood tests and xrays etc but will not bore you with even more than I have to. I did have an X ray of my cervical spine in February that showed "sclerotic changes" but now I am hearing the following terms that I cannot google enough to understand. Can someone please shed some light for me? Any help is desperately appreciated. I would love to eagerly fight whatever is wrong, but no one seems to know. The following terms were on my new MRI's:   ( i am not including anything that says normal) Flow voids are evident within all the major intracranial arteries at the base of the brain. A developmental venous anomaly is present in the right frontal lobe. A small fluid level is present in the right maxillary antrum with mild mucosal thickening. Mild Mucosal thickening is also apparent in the posterior left ethmoid sinus.  The T7-T8 and T9-T10 level demonstrates a right posterior parasagittal disc protrusion which mildly indents the ventral aspect of the cord. the dorsal CSF space remains patulous. Also, shows no scoliotic deformity (although this has not been the case on every other XRAy or MRI they have seen scoliosis). L4-L5 demonstartes a mild circumferential disc bulge which projects 2-3 mm into the spinal canal. the AP diameter of the thecal sac remains 14mm. Mild facet arthopathy is present.and finally...L5-S1 demonstrates disc desiccation with mild loss in disc stature. A posterior disc bulge contacts the right S1 nerve root without compression against the facet. The AP diameter of the thecal sac remains 15mm. Bilateral facet arthropathy is present without significant foraminal stenosis. Mild lumbar spondylosis is evident without spinal stenosis or significant foraminal narrowing. Most of this information is back related I know, but since I dont speak doctor, I just wanted to know if this has any part of what he thinks or thought could be MS or some other Demyelinating disease and myelopathy. I just want something to fight against. I could accept just about any diagnosis at this point, but the not knowing is making me crazy. If anyone has any thoughts or can help me translate, most especially the flow voids and venous anomally that would be a great help. oh yea..what does a grossly normal cervicomedullary junction mean?         THANK YOU!

[buriedinfur]

Oh I can hear you with wanting to find out what is going on. Again, I'm no doctor, but you do sound to me more on the spectrum of RA than MS. There is no mention of plaques here that I can see that you'd find with demylinating diseases.

(A developmental venous anomaly is present in the right frontal lobe.) This means that you have an bit of blood vein that went a little screwy when it was growing (when you were 'developing) and made a kinda lump. They can happen anywhere in your body - I had one taken out of my groin just because it was annoying as heck. Mostly other than that they don't cause any issues. I'm not familiar with them in your brain but I don't think this will cause any issues.

(A small fluid level is present in the right maxillary antrum with mild mucosal thickening. Mild Mucosal thickening is also apparent in the posterior left ethmoid sinus.) Basic translation is that the lining of these sinus cavities are thick. Allergies etc can cause this. Boogers!

Hang in there. Hope you get the answers and can find a doctor that takes the time and doesn't make you feel rushed and pushed into big treatments that worry you. I think it's great that you are looking to understand all these things, cause it will help you in discussing things with your doctor if you are informed. :)

[psmith90]

Thaks for the talk and encouragement. This was my first post on a blog. Boy can I ramble! I am a natural! I have had some abnormal test results but the ones you mentioned were all normal, but as you know (I read your profile) the blood tests can change with he weather and honestly, like I said before, I just want something to fight against. I am very lucky that I have a husband who understands and knows that I am not nutty and that the pain is real. I like your comment on treating these things as symptoms of something else rather than the main priority. I do tend to hang on to what they may say in optimistic hopes that this can finally be the answer. Yo hang in there too. Maybe we will get a Holiday miracle :)

[Jules77733]

I know your feeling about not knowing...I've been "really sick", myself, for 8 months, but somewhat "sick" for the better part of the last 5 or 6 years. The last 8 months have been terrible, and it's really a result of the uncertainty. I can't get treated for what I don't have...and they haven't found anything yet, so I'm not really being treated for much, and the medications I'm taking don't resolve most of my symptoms (the joint aches/pains are the roughest!).

In reading through your post, particularly the portion where you describe your abnormal MRI results, it doesn't sound like MS to me...I'm not a doctor, but I've read a lot about neurodegenerative diseases, and I have read a little bit about what the MRI results in patients suffering from MS look like. What I would focus on is the portion where the radiologist noted, "A developmental venous anomaly is present in the right frontal lobe"...is this some sort of tumor, or just a blockage? I'd be interested to hear what your doctor's comments were on this. It seems like the abnormalities noted in your spinal cord are a symptom, rather than something I would look to investigate further as the main priority...if that makes any sense. Something is going on in your brain, obviously, and this should be explored and correlated with the appropriate bloodwork--i.e. the disc bulge and desiccation could be occurring due to compression of structures in the cranium.

What were your notable abnormal bloodwork results? I.e. white blood cell count, red blood cell count, apha-fetoprotein, EBV titer, ANA titer, etc...were you tested for these, and if so, were any of them abnormally low or high?

The "grossly normal cervicomedullary junction" is likely referring to the area (or junction) where your cervical spine meets your medulla, near the base of your skull, and the fact that it's mainly normal in appearance (it wasn't noted as appearing abnormal in the MRI).

I hope you find out what's wrong with you soon--then you can really begin the fight! Hang in there and don't give up.