{Details inside} So... Where do I go from here?

My daughter’s former long-term boy friend has MS. That might be a possibility because there are many variations of symptoms manifested in different people.

But this is just a wild guess.

Under any circumstances, I am really sorry you are going through both the physical mysery and the ongoing anxiety. It ain’t fun.

Chronic Fatigue has a whole range of symptoms that can be quite obscure. This lists some of them.

I don’t think it’s all in your head. It could be some form of auto immune problem that is hard to pin down.

@Bellatrix: That does seem to fit better than other guesses… I’ll definitely keep that in mind. Thank you for the link!

I am so sorry that you are going through all of this. I just want to let you know that I know how you feel, I went through something very similar a couple of years ago. It’s a confusing, scary, and frustrating process, and it certainly takes a toll on you after a while. I can’t offer any suggestions except for my own diagnosis, but my best advice to you is just to try to relax as best you can, however hard that may be, until your neurologist appointment. Believe me, I tried searching and searching for possibilities, but my efforts were mostly fruitless and I was just left more anxious and disappointed than before. I’m not sure there’s anything that anyone can say to comfort you until the mystery is solved, but I’ll share my story with you in case it helps to know that you’re not alone here.
P.S. I apologize for the length, but as I am sure you know all too well, these things are difficult to explain.

I had somewhat of a “constant headache” for years; it was at an annoying but tolerable level, but never went away regardless of any medication. My primary physician had dismissed it and chalked it up to hormones (I was in middle school when they started) and just told me to take some Aleve, despite my persistence that the headaches weren’t going away and were getting worse. Fast forward to around the time that I started 10th grade, I developed a whole slew of other symptoms. All of a sudden, I was having extreme dizziness and was very lightheaded, slight balance issues, vision issues, sensitive hearing, auras (though I did not realize that this had been a symptom until quite recently) and massive and persistent migraines. (As you can imagine, all of this also resulted in a bit of nausea.) At this point, my doctor finally referred me to a neurologist.

The first step with the neurologist was, like in your case, getting an MRI to rule out any of the really serious possibilities, like a tumor. Like you, my brain was just fine, but it was almost more frustrating to know that there was nothing physically wrong, because it meant that we still didn’t know what the problem was. I, too, went through a period of time where I was second-guessing the truth to my symptoms, and I worried that the whole thing was psychosomatic- Is it stress? Am I going insane? Is it all in my head?

After we had ruled out the serious possibilities, my neurologist started asking more in-depth questions, to narrow down the possibilities. Eventually, based on my past headaches, he came to the conclusion that I have a migraine disorder. Initially, this diagnosis was not satisfying to me- after all this time, I had expected some specific illness or disease, and this didn’t have a name, there was no specific treatment, and there was no cure. All we could do is try different medications that treat chronic migraines and see if one of them worked. I went through several over a few months before finding a medication that has helped to treat it, and it was only then that I knew that it was real, that I hadn’t imagined it all.

I still deal with the symptoms- the intense migraines come back a few times a month, and some of the other symptoms come along with the worst of them, but I am in a much better place today (I am now a freshman in college). I was lucky to have a great neurologist, as I hope you will too, that found a diagnosis and worked with me through all of the confusion and frustration. Just know that there is light at the end of the tunnel.

Feel free to PM me any time if you want to talk, if you just want someone to listen, or if you have any questions about my symptoms or the process.

It sounds to me like you go back to your doctor and tell him some of the symptoms he asked you about are developing, and see if he has a new guess for what might be going on. I doubt it is all psychosomatic.

I don’t remember, have you been to a rheumatologist? That is who I would see if you haven’t yet. Was Lupus ruled out?

As far as MS, which @gailcalled suggested, that would be a guess of mine also, except I think the MRI would have confirmed if you had it. Unless maybe at the beginning stages it doesn’t show up easily? I have no idea if that is the case or not. I have muscle trouble and the neurologist told me I was normal, and for sure I’m not. My symptoms are not the same as yours, I am not comparing the condition.

You ruled out thyroid problems I would assume.

Were you taking a new medication when this all started? Even if you are not taking it now? I swear I had serious brain fog and some other symptoms for about 6 months after I took very large doses of a medication that I was allergic to. I don’t know if being allergic to it had to do with the brain fog or it was just a side effect of the medication.

My thoughts are much like @JLeslie‘s – the MRI of the brain would have likely turned up signs of MS; and if your primary Dr. was asking about the symptoms you now have, you might want to check back there to see what they think of these new developments. As @Fly mentions migraine aura can involve many symptoms in the body, so the neurologist might look more closely at that. Auto-immune, lupus, chronic fatigue can be checked with a Rheumatologist – but I’d imagine that the primary has already ordered some of the bloodwork like RA and other tests that show inflammation in the body (I can’t recall the specific acronyms right now).

Meanwhile, try logging your symptoms daily – there are apps available if you have a smartphone – as well as your activities, dietary and fluid intakes. This can help to see if there are any patterns or triggers like sodium, caffeine, wheat, high-fructose corn syrup, over-exertion, too little or too much sleep, not enough water, etc.

I hope you find answers soon!

Have you lost weight, passing urine more frequently or been extra thirsty and have had your blood glucose checked?
Sound neurological but could also be metabolic

@Arewethereyet: When this all started 7 months ago, the thing that was most alarming was constant, unquenchable thirst. At that time, they did a bunch of bloodwork and other tests to rule out diabetes, thyroid problems, and a stuff I didn’t understand. It all came back normal. Ever since then, the word normal has been one of my least favorite words. :P

@RandomGirl I was thinking chronic fatigue syndrome. Have they checked for the Epstein Barr virus?

Just a suggestion I think I have heard that MS isn’t always caught through an MRI. And sometimes thats why they need to resort to doing a spinal tap. But don’t quote me on this. I do know however that MS is hard to find at first because it is so specific. Most doctors do believe it is all in your head.

I am one of those people who have all of those sypmtoms that I am like a case book study. I took the effort to write all my symptoms down in a book with dates and times and bring it to the doctor and he looked through the book and stated “thats a lot of symptoms, I’m sending you to a psychiatrist.” Then the psychiatrist sent me to a neurologist who made me walk down the hallway and said “I don’t see anything wrong you.” So I still suffer with all this stuff.

If they can’t find MS you will have to put up with that to. I on the other on hand haven’t even been able to coax my doctor for a much needed MRI :( I dislike my doctor.

So good luck I hope you get the answers you deserve at least one of us can rest a little better knowing, thats the part I hate, not knowing. Which I understand you still don’t know but I’m praying for you that you will find out soon, even if you don’t believe, hey maybe it will work. :)

BTW, how are all your hormone levels and your iron level like the basic routine blood stuff?

Sorry I’m not caught up on your previous health issues, or I might have been there but my mind is going. :/

Have they ruled out Lyme Disease? That seems like it might be a possibility.

(And may I just add that your informal writing, as here, is just wonderful!)

@JLeslie: No, I haven’t been to a rheumatologist yet. The primary care doc didn’t seem to think it was necessary. I think I will push in that direction if nothing comes of the neuro appointment next week. From what I can see on the internet, lupus sounds like a long shot. I only have a few of the symptoms, and I have a lot more that don’t indicate lupus. (According to what I can find.)

@hearkat: The primary care doc, after seeing my clear MRI, decided it was just migraines and gave me some Imitrex (migraine meds) to try. They didn’t do a thing, and I thought that idea was bogus, especially because I didn’t have any of the other classic symptoms of migraines. The idea that other symptoms can be the aura of a migraine is interesting – maybe I shouldn’t have thrown that idea out so quickly. Thank you!
Also, I have an iPod Touch and can use just about any iPhone app – do you have a symptom logging app that you suggest? I couldn’t find one in my quick search.

@Adirondackwannabe: Unless it was one of the many things that got ruled out in the fall with all my blood tests, I’m pretty sure they haven’t checked for Epstein-Barr Virus. What is it?

@nofurbelowsbatgirl: MS might not show up on an MRI, interesting… Thank you for praying.
I honestly have no idea what my hormone or iron levels are, because I haven’t had any blood tests in 7 months. (They were normal then.) Would it be a good idea to get checked again?

@janbb: I actually have several friends who ended up in the hospital for months with “mystery diseases”, driving everyone crazy that no one knew what they had, and then someone got the bright idea to check for Lymes. Wow, did they get better fast! So it’s definitely on my list of “Things to check if the neurologist doesn’t find anything”. (Especially since the three of them had extremely different cases, with just about every variable changed, and the only things they had in common was where they went to school and that they spent three weeks at a camp last summer. Guess what – I worked there with them! I don’t remember getting bitten by a tick, but it’s definitely possible.)
Thank you! The part of formal writing that I absolutely despise is not being able to write with the same wording, inflection, or “punctuation” I use in normal conversation. Informal writing is how I stay sane after writing tons of papers. ;)

@RandomGirl Epstein-Barr virus has been linked to chronic fatigue syndrome but I don’t think there’s any conclusive evidence to back it up. It’s one of those all these people have the same symptoms and this is what we have so far illnesses, if that makes sense. In general, where are you located. Lyme disease is another possibility.

@Adirondackwannabe I’m in Eastern Minnesota – prime tick country.

@RandomGirl Is Lyme disease out there? I thought it was mostly in the Northeast. I’m in Upstate NY.

Ebstein Barr is the virus that causes mononucleosis (the kissing disease) the theory is when it acts up again it displays itself as Chronic Fatigue, meaning those people are almost disabled, some are disabled with crippling exhaustian and other negative symptoms. It’s similar to getting chicken pox when you are young and then later on getting shingles. If you test the blood it shows we have been exposed to varicella previously if we had chicken pox, but the numbers would not be extremely high; if we get shingles the numbers would be high during the outbreak, because the virus kind of woke up again.

If you don’t have the other Lupus symptoms I doubt you have it, but doctors love testing for that one for some reason. I think they ruled it out for me 3 times, each time I told them I don’t have Lupus. You might want to rule it out once though if you aren’t getting anywhere. Make sure you bring all your blood tests with you to the specialist. In my opinion you have to start really looking over what has been tested, look at lab work yourself, because you will catch if a number has changed before the doctor if the number is still within normal limits. What I mean is look for a trend moving outside of normal. If you have a copy of your blood work do you know if they tested ESR? It might have said Western Gren.

About Lyme’s disease, do you have joint pain? I must have missed that if you do. There are a couple different tests for Lyme’s disease, or maybe now they only use one. Anyway, sometimes one test will be a false negative. Do you live in a state where Lyme’s is common?

This is way out in left field, I might have asked this before, have they tried any antibiotics for you?

@Adirondackwannabe and @JLeslie: Yes, we have Lyme. I can think of five people off the top of my head who’ve had it. It’s fairly common.

@RandomGirl That’s good in that the doctors there are probably very familiar with the different types of testing.

Do you live in an old house? Funny thing, spirits can cause nausea and headaches and a whole number of strange symptoms, this probably isn’t the source, but do you have unexplained emotional outbursts, or feeling sad or crying for no reason -this could be the answer – if you feel better when you leave home then – this could be a possibility, otherwise like someone else said – aneurysms can be hard to detect, funny noises in the head is a sign, but who knows? It could be a multitude of things.. goo luck there!

@strangeuniverse Guessing you’re not a doctor.

^^^ Unless this kind.

janbb – I’m guessing you know nothing about spirits? I am just offering another possibility, when we go to the cemetery – my oldest daughter will get sick sometimes, a headache & nausea – because she is sensitive to spirits, as soon as we leave she always feels better, and it’s not because she doesn’t want to be there or is scared, I have walked out of my bedroom into the living room where you can see the kitchen and sometimes I’ll see this fog – or whatever you call it, most of the time I don’t – but every once in a while – just offering a different perspective, or maybe I should just say the same exact thing that everyone else – that would be helpful…

funny gailcalled – yea I’m a witch doctor, geez – you guys have been on here a long time – I said it probably wasn’t the source of her problems! I just offered a variant solution, I am so sorry you guys have to be smart a**‘s – you probably know nothing about what I’m talking about..

@strangeuniverse: Well I can stop this odd little conversation right now. We live in a 42-year-old house that’s been in our family all along. No one’s died here, and there’s never been any mysterious happenings here. I think we’re good on that front, especially since I don’t get better when I leave, no matter how long I’m gone.

Thank You and Good Luck!

@RandomGirl I think seeing a rheumatologist if nothing turns up at neurology is a very good idea. Although your symptoms may not seem “classic” for any particular autoimmune disease… that’s the problem with autoimmune disease. Almost NO one is classic. MS, another autoimmune disease, is the same way. Presentation is often so variable because any and all of your organs could be affected.

Another suggestion, which I credit largely to @hearkat, is something like Celiac disease (again, autoimmune/food allergy). Celiac can have some very bizarre presentations. Although “metabolic problem” is too broad of a category too do much with, a food diary could help you narrow down a specific intolerance.

Speaking to MS more specifically, @nofurbelowsbatgirl is totally correct. MS is notoriously difficult to diagnose, and although you do not meet the criteria that doesn’t mean it is not developing.

One suggestion that I would like to make (which may or may not help) is to keep in touch with your primary. Write down a list of your concerns, and tell your doctor, “I really want to get to the bottom of this, what are you considering and what are all my options for figuring this out?” Often doctors have terrible communication skills and start shuttling you around from specialist as a sort of “pass the buck” response to a hard case. They want to find you an answer, but are frustrated and forget to share the reasons WHY they are thinking what they’re thinking! I’m not suggesting you vent (as that will likely be received poorly), but try to open up a dialogue. I think doctors tend to simplify complicated cases (e.g. “it’s just headaches, try sumatriptan”) because they think the patient is expecting a quick answer and they want to give it to them. If you make it clear that you want to get to the bottom of these symptoms and are willing to go the distance to feel better, your doctor might do a better job explaining the options/possibilities and where to go next.

Sorry that was kind of a long answer, but I really wanted to contribute. On a slight side note (referencing my post on your previous post), my roommate found out the cause of her issues. It was elevated intracranial pressure secondary to taking fluorquinolones—only 140 cases reported! She found her needle-in-a-haystack, and I hope you find yours.

It might be Lupus, but that is a longshot. Doctors you are seeing have a better guess.

To expand on what others have said in regards to documenting your symptoms: write down the little oddities you notice, too.

Do you have eyelashes and eyebrows? Do you ever lose them in patches?

Do you notice flare ups? Or times of the month where symptoms are more pronounced?

How do you feel after you eat? Are you more energized or does food cause drowsiness? Do night shades cause pain, headaches or drowsiness?

Do you react to mosquito bites? How so and for how long?

Do any areas of your body hurt prior to bedtime? Do any hurt in the morning when you awaken?

What time of day do you have the most energy? What time of day do you feel most wiped our?

How has your skin changed as your symptoms have increased? Thicker or thinner? More easy to bruise? Cracking?

I’ve been to all sorts of specialists. The doc that’s helped me the most is a real MD, but works more as an integrative doc….he specializes in HIV/aids, auto-immune and autism.

What you need to find is an MD willing to listen. You need to be prepared to inform this doc of all of the details you can once you find him/her.

@RandomGirl sorry for the delay. Maybe you should have another blood workup just to be sure. Get your iron checked. I know I had low iron and was getting headaches, fatigue and feeling lethargic and there are other symptoms off the top of my head I’m not sure. Also you could have either fybromyalgia or carbon monoxide poisoning which doesn’t always kill you < I’m not sure about carbon monoxide though since you have a few symptoms that don’t even sound like carbon monoxide poisoning. You may not have low iron either but it’s worth checking out.

@RandomGirl – Symple seems pretty customizable rather than being geared to any one disorder. The others I’ve looked at are geared toward Rheumatoid Arthritis. I’m very in disciplined, so I haven’t used any on a consistent basis.

@hearkat: I tried that one – it looks like it’s for general conditions like asthma that you’re trying to control, and figure out what makes it better/worse. It’s set up so you only have one entry for each day. I need something much more detailed, that I can log basically my whole day. :/ thanks for the suggestion, though!

@RandomGirl I log my stuff on a regular calendar, and just keep a running note for my next doc visit.

If you want to get fancier with logging your days, there are calendar apps where you can detail symptoms, mood, and energy level for each day. You can also set up a reminder so you don’t forget to fill it in….or remind your self to take meds, etc.

Was just studying and came across polyarteritis nodosa which fits a lot of the different elements- young person, headaches, abdominal pain, etc. its an autoimmune disease affecting blood vessels. Might be something to ask about if you get a rheumatology work up.