The hunt is back on

[Luongo]

Just looking for some advice. I'll try to keep this brief.

I am undiagnosed. In Dec 2010 I had sudden onset numbness, insomnia, non-stop muscle twitches, hyperreflexia, serious neck pain, vision problems, and a few other odds and ends that sent me to a neurologist. Labelled me 'possible MS'. Sent me for a brain/c-spine MRI WITHOUT contrast. It came back normal and he said, "results are normal, you don't have MS, must be stress". I sighed and left. Went to a neuro-opthamologist some months later to get the eyes checked. He was baffled that the neuro did it without contrast. Sent me for another brain MRI with contrast... came back normal.

There are plenty of other neurologists, opthamologists, rheumatologists, retina specialist, general practitioners, etc. that I saw in the 6 months following that attack. No one had any answers. I felt defeated and gave up, resigning to waiting until some catastrophic incident to knock me down until someone might care enough to look for anything further.

Was negative for lyme. B12 was fine. Had a chest x-ray that was negative for sarcoidosis. High ACE level and low lymphocyte count (which have a correlation with MS). I feel like I'm unfortunately barking up the wrong tree.

My sex drive flat-lined somewhere along the way (I'm not really sure when) and now I have some weird swallowing dysfunction. I can eat fine. Not sure if they're related.

Sitting complacent for a few years was decent for my mental health but I'm back to having the drive to look for answers. I'm looking to get a referral to a neurologist in my area who comes highly regarded. Where I'm looking for guidance...

1) Based on the tests I've have and my experiences, does anyone have any particular advice on questions to ask this neurologist where past doctors have failed? I feel like I haven't been getting any progress with what I've been doing.

2) Some of the initial symptoms have gone away. The numbness, muscle twitches, and insomnia have gone, but everything else I still have. And then random things like the low labido and swallowing weirdness just get thrown on top without being part of a huge episode. With minor recovery but a lack of definitive episodes since the initial, does this sound more like RRMS or PPMS?

3) And finally a question just on personal feelings. Given the low intensity of symptoms (relative to what some of the terrible possibilities are) would you spend the money, time, and mental anguish for another 6 months or year to keep searching or would you be fine with just waiting indefinitely for something to happen?

[Mocamo]

For what it is worth my personal opinion is that you have to be your own doctor/analyst/advocate. Like you, I have lowered sex drive and swallowing dysfunction and some other issues you haven't mentioned. Unlike you I have been diagnosed with MS and have a bunch of lesions. The docs now think that the migraines/dizziness I had for 10 years was actually MS. The tingling and other issues only reared their ugly head the last 2 years or so. All this to say that I would not sit around and wait for some doctor to give you a diagnosis that may or may not be accurate. They diagnosed me with BPPV/Migraine 10 years ago and then last year I had a neurologist practically yell at me that I should have been on DMDs the last 10 years. He didn't seem to comprehend that no one told me I had MS until the last 2 years.

Find a primary care doctor that is a "functional medicine" doctor. This website will help you find one https://www.functionalmedicine.org/ I would also find a good nutritionist. I found one in my area by reading nutritionist blogs. I had a primary that sent for for an ELISA/ACT blood test to identify delayed sensitivities. Once I followed the recommendations I noticed I lost 20 lbs and stopped getting hives and my energy increased. My primary care physician sent me to a lyme doctor because I had one band positive for lyme so I have been treating that with antibiotics for the last year. That is a tough road and I have had my doubts about it. However the proof I think is in the fact that I have not had a relapse in over 2 years. Whether this is from lyme or some other unknown benefit of antibiotics I don't know. Also my walking has improved, swallowing and someone at work recently commented that they saw quite a change in my appearance over the last year.

Don't panic but do find a good core group of doctors that will help you find the root cause. That may take some time through trial and error but I think it will give you peace of mind. In other words - don't wait for something bad to happen. Use this as an opportunity to improve your health. Try yoga, meditation, accupuncture etc...whatever works for you to be positive and healthy.

Hope that helps.

[Luongo]

Thanks a lot, I appreciate the reply.

The mental health toll is a big thing. If the troubling symptoms aren't bad enough, the duel between being in the dark and the ongoing, fruitless quest for answers can get very taxing. I definitely need to find a way to manage this stress better in general. Thanks for the input.

[Youarethecure]

Whatever is going on it wouldn't hurt to look into diet, exercise, nutrition, and trying to be "stress free". That way if it really is something, you are ahead of the game if you ever are diagnosed.

Also, it could give you piece of mind knowing you are doing everything possible if indeed you have something.

And honestly, it is what it is. Stressing over whatever is going on is only going to make it worse. But trust me, I know being in the dark is frustrating.

I wish the best for you,

Chris

[Mocamo]

Learning about how nutrition can heal your body is good general knowledge for any disease prevention. Learn more about oxidative stress, free radicals, fats, vitamin D. Find out if you have any malabsorption issues etc. Sometimes a regular blood test may not show the full picture so you have to work with someone who will do other tests. When you get those results you can always post them and get feedback.

Even if you do have it you will deal with it - people have remarkable resilience. I thought it was the end of the world when I was diagnosed in the hospital. It forced me to clean up my life and now I am probably better off. This is coming from someone who hates "uncertainty". But I have learned to deal with it by focusing on what I can control - what I put in my mouth!

This health scare is forcing you to take a look at your health. So you will be ahead of the game whether you have it or not!

[mallori735]

This sounds so frustrating. I'm wondering, what kind of swallowing difficulties have you had? How would you describe it? Hope you find an answer, soon.

[Luongo]

Learning about how nutrition can heal your body is good general knowledge for any disease prevention. Learn more about oxidative stress, free radicals, fats, vitamin D. Find out if you have any malabsorption issues etc. Sometimes a regular blood test may not show the full picture so you have to work with someone who will do other tests. When you get those results you can always post them and get feedback.

Even if you do have it you will deal with it - people have remarkable resilience. I thought it was the end of the world when I was diagnosed in the hospital. It forced me to clean up my life and now I am probably better off. This is coming from someone who hates "uncertainty". But I have learned to deal with it by focusing on what I can control - what I put in my mouth!

This health scare is forcing you to take a look at your health. So you will be ahead of the game whether you have it or not!

Diet, supplements, and exercise are all things that I'm working on now. I'm pretty good as far as supplements are concerned. I joined a gym and go a couple times a week along with my wife and I'm also hoping that once the weather is nicer I'll just be more active in general. Diet is the part that I struggle with the most. I'm admittedly inconsistent. I'm trying to cut out gluten and dairy to start with (and then hopefully fatty red meats) but I'm finding it tough to stay with since it restricts the diet so much. I'm hoping to piece this together. A problem I have is that I'm very underweight and I'm worried about losing even more.

This sounds so frustrating. I'm wondering, what kind of swallowing difficulties have you had? How would you describe it? Hope you find an answer, soon.

The swallowing difficulties are odd. There's an audible click and a *knock* sensation whenever I swallow. Eating solid foods is fine but small quantities of liquids and my own saliva feel 'off'... it feels like it gets trapped in my throat somewhere and it usually results in me having to burp. It just kinda feels like my throat is unaligned or something and it grinds when I swallow. 2 ENT's looked in there with laryngoscopes and saw nothing.

[mallori735]

Hmm! That's odd. A knocking sensation. I've been having difficulty swallowing the past couple weeks, just liquids. I keep choking on water, as if it just slips down the wrong tube. I'm also breathy and hoarse. Oh well, just another symptom to add to the list for when I see the neurologist in May. I hope yours goes away though, mine is super annoying and a little scary at times.

[Luongo]

After meeting with some specialists and having a metric crap-ton of blood removed from my body, a doctor thinks I have Neuro-Behcets disease. It is exceedingly rare and available information is a trickle. Seems like "a difference without a distinction" in many regards with MS, other than that it is with it's own bundle of scary complications.