Need help....

[Lacedaface]

Hi! I guess I'm desperate for some answers... I'm a 25 year old female who, for a few years now has been dealing with a long list of varying and coming and going symptoms... starting with aggressive fatigue that would keep me in bed for 16 hours a day almost too weak to even use the bathroom. After that shifting to hearing loss in my left ear. I started to have these horrible muscle contractions in my legs at night that would cause my legs to also shake violently whenever I'd try and go to sleep. Along with these things in the more recent years I've been having issues with my balance and have developed a sort of waddle when I walk. My legs become very weak trying to go up the stairs and I usually have to lunge my upper body forward and grab the railing so I do not fall. I've almost completely lost my ability to see at night, and do have double vision in low light settings. I've had small bouts of intense vertigo, violent mood swings, memory problems,and fluttering muscle contractions in my entire body. I've noticed too I've been having issues with my bladder, either I'm running urgent or waiting for something to come out. Same with my bowels. And this is only half of what I've web dealing with off and on for a few years. Anyway, I guess I'm here because I need advice... I've essentially had every other test under the sun done with all negatives. My primary finally pressed for some MRIs and they have shown "a few small foci of T2 hyperintensity of the white matter" they were sent to a neurology office and waited in their triage for 3 weeks, all the while told by the receptionists there that they were being reviewed? I'm not sure what any of this means... anyways, I got a call back last week saying that had "matched" me to a provider, she is one of the only 2 MS specialists at that clinic... I guess I'm wondering more or less what all this means. I've been sick for too long and need answers.

[aspen2]

You have symptoms that could be ms, but because there are no symptoms particular to ms you are now likely in the rule out stage.

If the lesions are large enough or in the right places, you may end up with a quick diagnosis of ms.  This would only be possible if your mris were done with contrast, and showed dissemination in time (i.e. a lesion enhancing to show it's active along with older inactive lesions) and dissemination in space (in at least two different ms diagnosable parts of the central nervous system -- juxtacortical, infratentorial, perventricular and spine). Quick diagnoses are pretty uncommon.

You most likely will be asked to have another mri in 3-6 months, and then annually if they still are unsure about a diagnosis.  Neurologists are generally uncomfortable with a quick diagnosis, and there is no proof positive test for ms.  They want to absolutely sure before starting ms meds, because there are mimics that are very close symptomatically, even mimics that exhibit similar lesions!  As well, ms meds are not without their own problems, and can worsen other conditions if one is misdiagnosed.

Lesions in other brain locations could be caused by ms, but have a myriad of other causes as well, so lead one away from ms as a diagnosis.  

If the lesions are small and no enhancement, or in the wrong places, you will end up in limbo if no alternate diagnosis is found, waiting for a change to your mris and likely even more blood work and testing (neurologists have at their disposal even more tests for more obscure things than gps ;) ..).

Some neuros at this stage will tell you that you don't have ms, which may very well be true, or which will be true until you are either diagnosed with ms, or with a mimic. Others will say that it`s not likely ms, or sometimes you may hear it is possibly ms but we need to wait for proof.

You may be asked to do a lumbar puncture if things don't look obvious, however in many parts of the world, they are being phased out.  As well, 5-10% of persons with ms don't show oligiconal banding, so it's often done to look for other issues.

I hope this helps, and I also hope you don`t have to wait too long for answers.  It can be a very frustrating time.  (((Hugs))) '

[Lacedaface]

Thank you so so much! That is extremely informative. I guess where I'm at with this whole thing is, I've already had many many other tests. So far in the past 6 months I've been tested for Lyme, lupus, lymphoma, thyroid diseases, liver function, diabetes, hypoglycemia, blood counts, and a whole rap sheet of others. I've had x-rays of my spine to check for issues there, I've been hooked up to a 24 hour holster monitor to see if it was heart related, I've had ultrasounds of my liver, kidneys, and pancreas all normal. Even had my eyes checked and my eye doctor suggested that my vision changes and issues were of neurological origin, because my eyes themselves looked healthy. It was at this point my GP mentioned that with all of this testing it had essentially been narrowed down to a neurological manifestation. Once I got the MRI which had to be done in an ER due to insurance complications, I had already had an appointment shceduled with a regular neuro for the 10 of October, the ER knew that. And told me they were sending my MRIs to her, but they did not. Instead they were sent to the specialist clinic without me having to call them to set it up, they had pretty much already set it up for me. The receptionist told me my "case" was waiting in triage to be assigned to the correct provider. Three weeks later I received the call back saying I had been scheduled. Come to find out the doctor I'm seeing essentially only deals with MS patients. So I guess you can say this has been a whirlwind. It's all very strange how this was all done.... a lot of this was processed without my knowledge. Sorry for the long post, this has just all been a lot.

[aspen2]

OH please don't apologize!!!  I completely understand, and did all of those tests and more during my 3 years of limbo.

Don't assume ms yet, however.  I got in to an ms specialist very quickly, however my lesions were minimized.  I'm confident they are taking you seriously, however, because of your age.


A few more decades and ms neuros (rightly so) are aware that there are other things more likely to cause lesions.

Do you have family support?  Are you okay?

[Lacedaface]

Yeah, I think I'm okay, just very stressed. And as far as support goes, ironically enough my boyfriend has MS diagnosed 1 year before I even met him. That was actually one of the reasons we really started talking because we both had a lot of health stuff going on and could easily relate to each other. I was deeper in a limbo phase then and the doctors were sure it was Lyme due to my hiking, and I guess I wanted to believe that was true despite 2 negative back to back tests. He urged me upon seeing my symptoms that I needed to get more testing done. He's fairly convinced it could be ms at this point, I guess he sees a lot of what he went through in the beginning in me. At that point I was done with doctors and kind gave up, but he's been very pushy with me to keep up the search. Almost getting angry with me when I didn't follow up, and has been keeping notes on me and even coming to my doctors with me and telling them things he's noticed. But lately, as the stress and symptoms resurfacing badly are getting to me, I don't want to stress him out or complain so I've been trying to find another outlet to vent about my issues. He's got enough going on and I don't want to make him worse while I'm trying to figure out why I'm getting worse, that just isn't fair. And I need to be there for him. (I have a slight hero complex). I appreciate you letting me vent a little about this. This all started about 5 years ago for me, with all the crazy testing starting about 2 years ago, and I'm a little tired and overwhelmed with the entire process. I'm trying to keep pushing though...

[aspen2]

(((Hugs))).  I'm surprised these are your first mris in that time.

Be encouraged that you will have an answer .. eventually.  Hopefully soon.  But if it's not soon, it will come.

[Lacedaface]

Thank you so much. I do appreciate it greatly. The appointment is tomorrow so hopefully that's when it'll all start to come together. Fingers crossed

[aspen2]

Keep us posted!

[Lacedaface]

Hey guys! So the good news and the bad news, it is not MS, the bad news is it is SLE a.k.a lupus. Which made more sense considering it is a family issue. My primary spoke with me tonight, and explained that this was the last test that needed to be completed because this was a suspicion all along. Thank you so much for the advice and support.

[aspen2]

I'm SO sorry for your lupus diagnosis, (although I'm glad the diagnosis time didn't drag out).

What evidence provided such a quick decision on your doctors' parts?  This is helpful information for this site, where so many folks arrive confident or terrified they have ms, without realizing how many mimics are out there.

Thank you for the update!

[Lacedaface]

Essentially, my primary has suspected this from the get go, there was also a positive ANA test with a more faulty reading. An ANA test alone does not immediately scream "you have lupus" because even healthy folks can present with positive ANA and no symptoms..my primary quite literally had to go through ALL the testing and rule out anything else it could possibly be. Lupus is also considered a great mimic disease as well, and can cause MS-like syndrome because it is a multi system auto immune disease, and it does create neurological manifestations even in cases of some patients experiencing paralysis. It is a very hard diagnosis to make, but will be done once every thing is ruled out, especially with the presence of the positive ANA. The neuro I saw was unaware of this, but did say to me that she was positive it was not a neurological originated disease. I had been in contact with my primary before and after this, because she wanted to know and be informed of my results, when I had told her what the neuro said, she sighed and began to explain why she had suspected lupus from the beginning. It also does run through my family as well, my paternal grandmother has it, and my father was a carrier of the genotype which had been discovered through DNA blood tests. My primary explained that with this sort of diagnosis the criteria is very extensive for having to rule out ALL other differentials, and because it's a multi system disease it can look like anything else. She said now, this was all the proof she needed to finally put this on paper. And honestly, I'm not that surprised that this was the outcome, I have three other family members being tested for it right now. And I had been told many years ago I needed to look out for this.