New to forum...does this sound like MS? Long Post

[nicknd]

Well, to start off, I'm an 18 year old male and decided to make my way hear after spending too much time on an ALS forum after convincing myself I had ALS.

So here's when/how all my "problems" started. In late April 2010 (a bit before graduation from HS) I was getting pains in my hip, didn't think anything of it. In a pretty short time, it spread everywhere. My legs were hurting, my abdominal area would hurt (not the entire abdomen at once, it would move around), my armpits would hurt, my arms would hurt, etc...

I went through most of the summer/early fall without really noticing much except the occasional pain. I got a bad respiratory virus at the end of September that lasted 6 weeks. During that time, all these pains came back but I also was having (and still am) weird feelings (like vibrating/tingling) in my legs. I also had a few days where my back was "warm" and tingly, that went away quickly. I also developed these short, sharp headaches (freaked out about an aneurysm/brain tumor for a while) which my family doctor ruled down to a post-viral nerve pressure and said they would get less frequent (which they have). So all was good until a few weeks ago when I started having trouble swallowing, which is still going on. I'm not choking on food, but It feels like I have to really push to get a good swallow. I also have some ear pain that comes and goes. I think it was about a year ago I started getting these charlie horse neck cramps that would last a few seconds, but I don't get them often. (I then again freaked out about bulbar-onset ALS, but that's another story.) And now these last few days I've been getting this weird pressure/tingling feeling in my forehead. I have also been mixing up and messing up words for a while now (probably a year or two).
The other thing is, I was having these episodes where everything was "too real." It's kind of like everything blends together or I can't pick things out, almost like watching a real-life movie.

I did recently go to the doctor (was feeling weak) and I do have a vitmain-D deficiency because I live pretty far north. Level was 25, normal is 32-100. I read that a vit. D deficiency can cause widespread pain because you aren't absorbing enough calcium.

Any help would be great. Hope to meet some cool people on here.

[Redwings]

Hi nicknd:
Welcome! Although the list of general neurological symptoms is long, it does have a limit. There are only so many neurological symptoms, but literally dozens and dozens and dozens of conditions that can cause the same symptoms. So symptoms alone can't be used to diagnose a condition.

As an example of that, there was a recent thread here that questioned how many conditions might be responsible for the sensation of tingling. The website wrongdiagnosis.com lists 951 possible causes. In a situation like that, how and why would/could someone pick only one of them and convince themselves that that's the one they have?

Your symptoms might represent MS, but they could also be caused by a hundred other things. So of all of your symptoms, how did you pick only one of them and convince yourself that you have it? When ALS didn't pan out, how did you go through the dozens and dozens of other possible causes and decide that MS is the one you have? What about all of the other possibilities? Just for your tingling -- what about the other 950 possible causes?

A variety of clinical and lab tests are needed to make a differential diagnosis. And other than a test for Vitamin D, you didn't say that you've had any kinds of lab or clinical tests. ALS has specific tests that are used to pin down the diagnosis. Did you have any of them? MS has specific tests that are used to pin down a diagnosis. Did you have any of them? Vitamin D deficiency can cause pain, but so can dozens of other conditions. Were you tested for any of those?

On top of that, many other tests are necessary to rule out all other causes than the one that's primarily suspected. Have you had any other tests at all that can rule in or rule out any specific conditions? Without specific tests, it's impossible for anyone to say what conditions you do or don't have.

That being said, it looks like a condition you do have is "Internet Symptom Syndrome," where people cruise the Internet to look at symptoms and convince themselves they have some disease based on symptoms alone. That's unrealistic because so many symptoms are shared by so many conditions. And you just end up scaring yourself, often needlessly.

This forum is a great place to discuss MS and related conditions and the challenges of living with them. It isn't the place to come just to compare symptoms and convince yourself that you have MS only because you have the same symptoms.

The best advice anyone can give you at this point is to work with your primary doctor and get a referral to a neurologist to do the specific tests that are necessary to rule in and rule out the dozens and dozens of conditions that might be causing your symptoms.

If you want to learn more about MS, one of the best places to go is the website of the National Multiple Sclerosis Society (www.nationalmssociety.org). Then you can come to this forum and talk about any questions you have about MS and the process of having it diagnosed. There are lots of great folks here who are happy to help you.

[Justsayyes]

Pretty scary to think you might have ALS. I few of your symptoms can be ones that MSers have, the numbness/tingling, and swallowing problems. Many here have had swallowing tests done. Since you have some ear pain along with that, was thinking maybe an ENT would be a place to start to check those symptoms out?

I was also vitamin D deficient, am taking a weekly gelcap for that and my level has increased to within the normal range. I noticed less muscle and general pain after treatment. Hope getting your vitamin D level up to normal helps you too.

Hope this helps!

[nicknd]

That's the thing, I've convinced myself I've had colon cancer before....and like I said, I'm 18.

The ALS scare, I do not need tests for that. I posted my situation on the ALS forums and they all kind of laughed it off. I "feel" weak, but I have no clinical weakness. I can easily walk on my toes, balance on my feet, run up stairs, move heavy furniture, etc.... As for the swallowing, that sent me down the ALS course again, but I need to realize that having ALS at my age is extremely low. I know it has happened, but it's very rare.

And I picked MS because, yes, I did read many of the symptoms and they somewhat matched up. I want to go to the doctor and get everything sorted out, but I'm so sick of going. I have easily been there 15-20 times in the last 2-3 months. Some I was sick, others were normal things I was just being hypersensitive about.

[fuzzywuzzy2]

You need to get an MRI and a Lumbar Pucture to help rule out MS. Altough these tests are not conclusive to MS thety will help.

I wish you luck and hope you find your answer soon!

[Just a small town girl]

I want to go to the doctor and get everything sorted out, but I'm so sick of going. I have easily been there 15-20 times in the last 2-3 months. Some I was sick, others were normal things I was just being hypersensitive about.

Like Redwings said, if you're worried about MS the best thing that you could do for yourself is to go to your primary and get a referral to a neuro who specializes in MS. Neither my neuro-opthamologist or primary really had a set person they worked with, so I did research on my own and told them who to refer me to. So you may or may not want to do a little investigating before you request a referral.

Like Fuzzy said, you really need to have at least an MRI done and looked at by a neuro who specializes in MS (they see things that other people don't).

Keep us posted.

[nicknd]

Redwings,

The first time I had all these symptoms, I was tested for Diabetes, Rheumatoid Atrhritis, and a few other things, anyway, they all came back normal. Then when I started feeling weak in mid/end November, I was tested for Vit. D (low), thyroid functions (normal), platelet count (normal), and white blood cell count (normal). And as I mentioned before, my CT scan was normal.

I want to go back, but I feel like I'm wearing my parents out with the doctor visits and medical bills. We have pretty good insurance and a low co-pay, but I still feel like I'm putting a financial burden on them by wanting to keep going.

[Redwings]

Hi nicknd:
I think there's another doctor that could be beneficial. Have you asked your primary care doctor for a referral to a mental health professional?

A good therapist can help you to 1) figure out why you feel the need to convince yourself you have dire diseases you don't have, and 2) learn strategies for staying calm and realistic while working with your other doctors to find out what condition you do have.

You said yourself that some of your doctor visits were for "normal things I was just being hypersensitive about." Anxiety about what might be wrong can make a person do that. Learning some coping strategies can prevent you from expending precious energy on the wrong things and help you better focus in the right direction.

Another thing you might try is taking a yoga class. Yoga isn't wimpy and it isn't "mysterious." It's a great way to get in tune with your body by getting your energies unscrambled and your mind focused. What you find out about yourself in the process might give your doctors some clues about what condition is causing your symptoms. Definitely worth considering.

[nicknd]

Redwings,

That is one of the things I really want to discuss with my doctor. While I have read some of my symptoms can go with MS, I don't have any major indicators. Just to let you know, it really helps to have people like point out how irrational my thinking is. I don't know what made this start. I've never had hypochondria/anxiety problems until I got sick in September.

[Twenty Miles]

Nick,
My initial thoughts/opinions are that you are facing some challenges with anxiety and it is putting you into high mode towards hypochondria. I would still be seeking medical advice to assure you do not have ALS, MS, etc. but also seek mental health advice as well.

Physicians are going to keep providing you with testing, because they listen to your complaints and want to work towards a diagnosis/solution. The problem is if the ailment is mental, a different professional is needed.

IMHO that could give you the relief needed. Therapy first before jumping to medications, so you may need to stay away from a Psychiatrist initially.

Have you ever been on any anxiety medication, if so did it help?

Finally, the internet can be both a wonderful and a horrible place. There is so much unregulated information (all of it) that you can find tidbits to reinforce and continue the hypochondria. Consider the sources you are viewing and sometimes it's nice to take a break from the internet.

[nicknd]

I will be going to the doctor soon if it continues. I'm pretty sure I don't have ALS...I just went out to the garage and curled 75 lbs 10 times with a straight bar and 35 lbs in each arm 10 times...this is the point I was at 4 or 5 months ago and I have not lifted weights since then.