This Is MS Multiple Sclerosis Knowledge & Support Community

I am new to this forum, and really new to the whole wide world of cyber groups. I have tho, and thankfully been looking over this message board for a few months. I thot I would finally put my predicament out there.. I am desperate for some feedback.

So I am 31, overall pretty healthy, and in 2008 was diagnosed with Lupus. I was presenting all the symptoms, I had a high ANA, and that was that. I didn't question it nor did I take any meds to treat it. So over a year ago I started presenting a lot of issues that didn't seem related to my lupus... This is where things get confusing.

I had sudden onset hearing loss of more than 50% in my rt ear, vision obstructions, temp paralysis in my leg, pins, needles, etc. so refered for an MRI with contrast, it showed multiple white matter lesions. So I go to a neurologist. She stated off the bat that she really didn't want to give me a dual diagnosis of lupus and MS, so we needed to dig deeper.

Went to an opthamologist and had optic nueritis, and swelling of my optic nerve. I had had over 30 lab tests on my blood. Nothing remarkable in my vitamins, and she tested my b12-D. Only thing that really stuck out was my below normal sodium, and above normal potassium. My anion gap too. These tests were repeated and consistent. Only one that showed something new and strange was my ANA, it was negative!

So onto the spinal tap. My pressure was 35. Not good. At the time I only took birth control, only medication I was on. So I got off of it. It's good to note as well, in these past years even tho I have always thot it was Lupus, I would only present with these symptoms maybe once or twice a year at most. By this time of the tap my symptoms had improved greatly. So they lowered the pressure and started diamox.

CSF fluid comes back and rules out virus, or bacteria. My white cells had a few extra, but my ANA negative! They also found TWO bands. So back to square one. My nuerologist took back my diagnosis of lupus and called it idopathic ih.

Anyone whom has taken diamox, has my greatest sympathy. It is awful and I am on a very big dose. Of course part of the side effects are pins and needles. Then about two weeks ago, symptoms started creeping back. Now I am really in a pickle cause I don't know what is causing it, the diamox or the disease.

I do trust my doctor knows best, and she has ordered a few more labs with results soon to come. I believe at this point she is attempting to rule out the lupus more than attempting to diagnosis me. I have of course too looked into anything and everything.

My question is; has anyone or is there is a correlation between MS and intercranial pressure? Also, how important are these ogli bands in a diagnosis? Lastly, the white matter lesions. My lesions were not caused by the pressure, in fact it is listed as a deylimanting disease on my records.

I know the protocol for the diagnosis. I have read thru it time and time again. I have also read on this sight that some see MS specialists. Can someone lead me in the direction of how to find a nuerologist whom specializes in MS? Lastly, is it common to take a long period of time of for the diagnosis?

I have much empathy for all of you suffering, from MS. I surely do not wish this diagnosis on myself of anyone. I would just like to hear about others experiences in their diagnosis. I fully understand, doctors know better. I just thot maybe if you could share your experience I could learn from it.

I know that's a long drawn out story, I am becoming more and more discouraged by the day. I don't want a diagnosis of anything to be quiet honest, but I have opened Pandora's box and now am on a mission to find it. The labs have a pattern, my body has a pattern, I have something going on, just wish they'd get to the bottom of it.

On a final note, and thank you for reading, and replying if choose to do so. I understand my case might be more difficult with the concurring diagnosis of lupus, but has anyone else has a different diagnosis that was eventually changed? Like I said prior I had an MRI with FLAIR and that's where the lesions popped up. My doc attempted to get an MRV, but as of now my insurance has denied it. Does anyone know if an MRV might be helpful resource in a diagnosis? Will it show my lesions differently? My thot it is strictly for surgical purposes, relating to my pressure. How long did it take to get a diagnosis? Once you began this road of testing? Also these bands... I keep coming back to those two bands they found. Lastly I have read a few posts about seeing another nuerologist for an opinion. I live fairly near to a metro area that may be possible, I just don't know how you do that? Do you get a referral from the PC, or how do you seek another opinion?

Any insight would be welcomed, and surely appreciated. Thanks!

Jmac wrote:...I thot I would finally put my predicament out there.. I am desperate for some feedback.

So I am 31, overall pretty healthy, and in 2008 was diagnosed with Lupus. I was presenting all the symptoms,....

Went to an opthamologist and had optic nueritis, and swelling of my optic nerve. I had had over 30 lab tests on my blood. Nothing remarkable in my vitamins, and she tested my b12-D.

Welcome to ThisIsMS, Jmac. Here is my feedback.

http://articles.mercola.com/sites/artic ... 8349#_edn6

Please note the following sections:

Link Between Vitamin D Deficiency and Multiple Sclerosis Strengthened

Vitamin D Deficiency Common in Those With Lupus
According to researchers in Cairo,14 most patients with systemic lupus erythematosus (SLE) have some level of vitamin D deficiency (defined as a level of 10 ng/ml or less) or insufficiency (a level between 10 and 30 ng/ml). Those with lower levels also tend to have greater difficulty controlling their disease.
On average, patients with SLE had significantly lower serum 25(OH)D than the healthy participants — an average of 17.6 ng/ml compared to 79 ng/ml. More than 73 percent of lupus patients had insufficient vitamin D levels, and over 23 percent deficient.
According to the researchers: "Routine screening and consequent repletion of vitamin D if needed is recommended in SLE. Restoring adequate vitamin D levels in SLE should be more explored as a potential and simple, yet valuable, measure to be added to their usual management to alleviate their condition."

The following article, "Vitamin D deficiency common in patients with SLE, linked to disease activity," reports the work from researchers in Cairo, referenced above:

http://www.healio.com/rheumatology/lupu ... e-activity

Since your ophthalmologist tested for the status of your vitamin B12 and vitamin D levels, would you share the actual number results? (It is a good idea to request your own copy of any test results.)

In view of the possible connection of low vitamin levels with neurological symptoms, Lupus, and MS, it is important to maintain levels in the high-end of the reference ranges (low normal is not the same as "optimal").

Hi,

Wow! what a mix.

I am a bit troubled by your comment about your CSF test ruling out infection. You are assuming that's a definitive test and I doubt that is right. Both diseases have poorly defined causative inputs. Infection can be in many parts of the body and inflammation can be for many reasons. I think you need to double check all possible types of infection. I would look for Lyme, bartonella, babesia,mycoplasma, rickettsia, prions, EBV, other herpes family viruses, bowel infections and anything else your doctors can think of. I would get a fasting amino acid test done to see what amino acid levels you have as well as tests for vitamin deficiency. If you have both or either disease, the big mistake would be to lump any symptom under a heading and let someone say nothing can be done. You will need to examine each facet and try to treat it as it's own problem to be solved.
Above everything else, you need to work from actual results not guesses.
The Diamox has a lot of side effects. You may need a better opinion than that of the person who put you on it . (https://en.wikipedia.org/wiki/Acetazolamide )

The ANA test can be unclear in its conclusion but it sounds to me you need to be rechecked for infections . ( http://www.hopkinslupus.org/lupus-tests ... ood-tests/ )

Good luck.

Regards,

When MS is active ANA is elevated. Many neurologist do not seem to know this!

jackD