No idea..... is it possible?

[SunshineGirl802]

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.

[lyndacarol]

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.

Welcome to ThisIsMS, SunshineGirl802.

I have no medical background and so I have no insight into what this might mean.

A couple thoughts/questions come to my mind:

Your username is "SunshineGirl" and you say you have had "every other test under the sun," I wonder if your GP has ordered a vitamin D ("the sunshine vitamin") test for you. Over 1/2 the world's population is deficient in vitamin D. Vitamin D is necessary for the proper function of every system in the body (to name a few: the nervous system, the autoimmune system, the musculoskeletal system, the digestive system).

Nutrient deficiencies of several kinds are often found in MS patients. Although you are not yet "officially" diagnosed with MS, it would be good to know your levels of vitamin D, vitamin B12, and magnesium (to begin with – there are many other nutrients lacking in folks with MS). These deficiencies can result in neurological symptoms (not all your symptoms necessarily have the same cause – some of your symptoms may be due to one or more nutrient deficiencies, which could be easily corrected allowing symptoms to be reversed in time).

If these nutrient blood tests remain to be done, please ask for your own copy of the test results so that you have the actual numbers ("Normal" is not adequate.).

[SunshineGirl802]

I do appreciate that insight greatly. As far as those tests are concerned I am unsure if those have been completed or not... I do know that I have had autoimmune celiac disease since birth. And I do follow a very strict gluten free diet for that. I have been tested for lupus, lymphoma, diabetes, hypoglycemia, Lyme multiple times, thyroid, and all of the other run of the mill tests. I have all of my results on paper for the specialist I am going to see tomorrow. I guess my biggest question now is, could it really be MS? Ironically my boyfriend has MS and he was the one pressing me to get all these tests done, because he sees a lot of symptoms as something he has already gone through... and now come to find out I do have lesions on my brain accompanied by a whole host of symptoms that have been coming and going for more than 5 years now. My concern is that they actively without my knowledge or input matched me to a provider that's sole career has been based off of diagnosing an treated this illness. I guess at this point I want to know what to expect or where to go from here. I'm very lost, a little confused, and honestly feel like I'm going insane. I've been putting this off for a very long time, I'm glad I had my boyfriend to give me the push I needed, otherwise I probably would've just kept brushing this off.

[lyndacarol]

As far as those tests are concerned I am unsure if those have been completed or not... I do know that I have had autoimmune celiac disease since birth. And I do follow a very strict gluten free diet for that. I have been tested for lupus, lymphoma, diabetes, hypoglycemia, Lyme multiple times, thyroid, and all of the other run of the mill tests. I have all of my results on paper for the specialist I am going to see tomorrow. I guess my biggest question now is, could it really be MS? Ironically my boyfriend has MS and he was the one pressing me to get all these tests done, because he sees a lot of symptoms as something he has already gone through... and now come to find out I do have lesions on my brain accompanied by a whole host of symptoms that have been coming and going for more than 5 years now. My concern is that they actively without my knowledge or input matched me to a provider that's sole career has been based off of diagnosing an treated this illness. I guess at this point I want to know what to expect or where to go from here. I'm very lost, a little confused, and honestly feel like I'm going insane. I've been putting this off for a very long time, I'm glad I had my boyfriend to give me the push I needed, otherwise I probably would've just kept brushing this off.

First of all, I commend your boyfriend for being supportive and providing the push you needed. There is no need to panic and rush into a diagnosis (the cause of MS is unknown and there is no cure at this time); but 5 years of symptoms might be a little long to wait before beginning the investigation of your symptoms. It is hard to be patient. But you have now begun a very good investigation with the tests you list. (I would just suggest that you always request your own copy of test results and keep your own file at home.

Concern for your diet to the point of even following a strict gluten-free diet is a good idea. In general, Americans eat too much sugar and junk food.

There is no definitive test for MS; there is no definitive symptom that identifies MS either, not even lesions on the brain. Brain lesions are often found in people with migraine headaches, vitamin B12 deficiency, and other conditions. Do not lose sleep over having brain lesions until more evidence is found that the root problem is MS.

In fact, many people with numerous MS symptoms can have perfectly clear MRIs – no lesions (!); other people who have no MS symptoms have been found (upon autopsy for numerous reasons) to have MANY brain lesions.

I understand your concern with being matched to a provider specializing in MS. I believe that any time you see a specialist about a problem, he is more likely to find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."


Now, I turn back to your boyfriend who has MS… Has he had a vitamin D test (the "25-hydroxy D")?

[SunshineGirl802]

Oh goodness.... he's had EVERY test in the book, including a celiac test (lol) thankfully that was negative. I do know that he's on 3, 400iu of vitamin D a day. And I think I do vaguely remember him mentioning once he had, had a deficient in that since childhood, I know I had as well. Always have vitamin D and Calcium issues growing up along with anemia. He's got me starting on the vitamin D as well, and we are both trying to eat healthier. (He's got a bad fast food and coffee addiction). And he's really been doing a lot better since we made the decision to take better care of ourselves. His walking has been so great lately, it's almost unbelievable. It's really nice to have someone that understands and is essentially going through the same things as myself. Too much information but, even having an incontence issue and he barely blinked an eye. I didn't need to be ashamed or embarrassed. He's even had to help me walk sometimes, and vise versa. It's a good balance.
And as far as the lesions go, I've never had an issues with migraines in fact never even really had headaches at all since this all started up, now I get these day long headaches that are so profuse it makes my world spin, sometimes my head pulsates so much it feels like it will explode. They usually start at the base of my neck near my spine then shoot up and around, sometimes even making my jaw throb. So I'm not sure if that could be the cause of it. I guess my main worries have come from three different doctors suggesting MS to me, one of which was a chiropractor who noticed I wasn't getting "nerve impulses" to my legs, because upon trying to raise them they shake and shudder, same with my core when I try and bend over. It happens in my hands and fingers too sometimes when I try and grab things, I've had to learn to switch hands frequently. It comes and goes. The other was my doctor, who upon getting the results of all my other tests had come to the conclusion that my issues were either neurological or spinal. And that was after I had 13 biles of blood drawn, ultrasounds of my vital organs, and a glucose tolerance test to look for diabetes. I was told because I was born with an autoimmune disease it puts me at a much higher risk for developing more, diabetes being of the main concern. But that was all free and clear, as was my spinal x-ray and other various small tests performed. So I guess at this point according to her it's daily narrowed down to some sort of neurological disorder or deficit. I definitely do not knock that it could be a vitamin deficiency whatsoever though, there is always worlds of possibilities, and even with a disease you can still have other issues that can be attributed to that. And I am so very greatful for you pointing that out to me, and him as well, I care about him a lot and want to make sure he's doing all the right things for himself. I def put him before me a lot and that's a habit he's trying to break me of.

[SunshineGirl802]

Good to know, I appreciate that insight very much.

[SunshineGirl802]

Hey guys! So the good news and the bad news it's not MS, however it is SLE a.k.a lupus. Which makes more sense considering it's a family illness. Probably won't be hearing from me know I guess I need to find a different forum. But thank you for the advice during this time

[lyndacarol]

Hey guys! So the good news and the bad news it's not MS, however it is SLE a.k.a lupus. Which makes more sense considering it's a family illness. Probably won't be hearing from me know I guess I need to find a different forum. But thank you for the advice during this time

Vitamin D deficiency is common in patients with SLE. (A study in Cairo found 73+ percent of lupus patients had insufficient vitamin D – defined as a level between 10 and 30 ng/mL; 23+ percent were deficient, which was defined as <10 ng/mL.) Researchers recommend routine screening and bringing vitamin D levels back up if needed.

SLE Patients Show Deficient Levels of Vitamin D (September 10, 2015)
http://lupusnewstoday.com/2015/09/10/sl ... vitamin-d/

Ask your doctor for the 25-hydroxyvitamin D blood test and request your own copy of the test results so that you have the actual numbers.

We wish you all the best.

PS Another person with similar situation…
Posted by Jmac: Lupus vs. MS: http://www.thisisms.com/forum/undiagnos ... 27382.html