What to do next?

[JayEm]

Hi. I'm new here, and while I probably don't have MS, whatever it is that I *do* have matches the symptoms of MS better than anything else, so I figured this was a good place to come and ask a question: other than neurologists, who would I see to figure out what I've got if it isn't MS?

My guess is that plenty of people here went to a bunch of different specialists while trying to figure out what was going on. I've had bad luck with neurologists so far--they check my symptoms, which makes them send me for an MRI. Two times in the past year, the MRI came out clear, so they then tell me there's nothing wrong (um, no. There might be nothing that shows up on the MRI, but something is definitely *wrong*.)

The most recent experience with this was this week on Monday. When the doctor said there was nothing wrong, I asked for suggestions on what other type of specialist to see, to try to figure out what was going on. He looked at me like I was stupid, and said that there was nothing wrong with me, and so I didn't need to see anyone else about it.

I was originally diagnosed by a naturopath with "chronic fatigue or fibromyalgia" (they didn't specify which) back in 1998. That seemed to make sense for a while, although many of my symptoms don't seem to be common for those, and now that I look at the current diagnostic criteria for those, I don't meet them (my pain isn't widespread, and I don't have any of the fibro tender points; I don't have a fever or sore throat, and my fatigue isn't consistently worse after exercise).

What I do have: double vision (binocular, one month in 1994, one month in 2001, and then constant since last year in March); random numb spots (some persistent, some that seem to fluctuate); weakness (worse on my right side); bad balance and occasional bouts of vertigo; fatigue (varying, worse with hormonal changes, damp weather, and hot weather. If all the stars align, I'll have a day or week with great stamina, although not quite what I had before all of this started); clumsiness in general and especially in my hands; my right foot drags when I walk (worse when I'm tired or when I've walked more than about 50 feet); problems with memory, concentration, and learning new things (gradual and inconsistent onset--ten years ago I was completing my PhD, now I often can't understand the newspaper); probably a bunch of other things I've forgotten to list.

In the past couple of years, I've come to accept that whatever I have is progressive: I never fully recover from a flare, so while on a day-to-day basis the fluctuations seem random, the overall trend is downward. If it is something where there is a useful treatment, I really want to figure out what that is, but I also get tired of doctors acting like I'm a hypochondriac and offering me pain medication or suggesting that I need therapy to get me to go away. (Pain isn't my primary symptom, and is largely reduced with massage; I *am* in therapy, and my therapist is encouraging me to see a medical doctor because neither of us can see a reason I'd be making this up.)

Thanks for reading, and thanks in advance for any suggestions of what other kinds of doctors to see to figure out what's going on.

[JerryD]

Hi JayEm,
Sorry to hear of your problems. I see that you consulted a naturopath. I saw that you had an MRI which showed no abnormalities. I am not a doctor but I know there are things that your doctor can do, if he/she takes the time to do them.
I can only say that you need to find a MD that practices 'integrative' medicine ala Dr. Andre Weil.
There are many tests that need to be done. You need to have your hormones tested. Don't trust your regular MD, he or she will probably ignore some levels . Vitamin D is a hormone . Do you know your level of D ? Did you have a Lyme disease test? Sometimes this test needs to be done a couple of times.
Even if your doctor doesn't see your problem, you know how you feel. Start by adjusting your diet . If you are overweight, the excess weight will make you feel terrible . Begin an exercise program . Just walking around your neighborhood for 30 to 60 minutes can make a difference . Exercise releases endorphins and help to make you feel good .
I hope this is helpful. Good luck

[JerryD]

I forgot to mention, you probably should get tested for food allergies / sensitivities. This is one test I know my regular doc knows about but didn't bother to test . My integrative guy did, and it has made a difference . He's a 'real' MD too.

I know I can't 'cure' my MS . That doesn't mean I can't safely treat the symptoms . And no negative side effects . By the way, search this site for LDN and vitamin D . You will be surprised to see their benefits. Good luck

[Sequoia]

You can't search for LDN on this site. The software requires 4 letters to do a search. Go to the "Medications & Treatments" forum and type "Naltrexone" into the search bar.

[Lisasberry]

sugestion

I had the same difficulty with my neurologist, he said he didn't know what was wrong and walked out of the exam room.

So, I found a new neuro I love. Another round of MRI's - nothing showed up. But! She insisted I have another one - a Tesla-3 (the others were T-1.5). Bingo! My brain lit up like the fourth of July! Also did a LP which showed elevated iGg synthesis rate, but no bands. She strongly feels I have them now but will not do another LP. Ate age 55, late onset MS is unusual, but it does occur.

Keep on searching It's your body, and you know when something is amiss. Maybe MS, maybe not. But find the answer.

[JayEm]

Thanks for the replies.

I was trying to be brief, so I didn't list some of the things I've done.

My current and last GP are both holistic practicioners, so that's made a difference on the regular medicine side of things. They are both really excellent doctors, and I trust them (which is a refreshing experience after years of bad experiences with GPs). My vitamin D is low, and I supplement that (as well as making efforts to get out in the sunshine whenever possible). My iron is low (most likely due to fibroids, also being dealt with through diet and supplements). B-12 is low, also being addressed through diet and supplements.

I've been tested for Lyme repeatedly, and I don't have that. And given that I've never been bitten by a tick, I don't think it's likely. (Also been tested for lupus, thyroid problems, blood sugar/diabetes issues...) And I *do* have allergies--the allergist says the food responses are due to my pollen allergies, and I'm getting allergy shots in the hopes of reducing my overall allergic response.

I do exercise as much as my body allows (which means more on some days, less on others). On my worst days, I can usually still manage to spend 20 minutes or more doing gentle stretching. On better days, it's usually brisk walks for 45+ minutes, as well as housework/gardening/etc. It's hard, because by nature I'm a really active person, and I have a hard time (even fifteen years into this) accepting that I can't get more active just by force of will. Over the past two or three years, as I've come to accept that this isn't psychological, I've worked at listening to my body more carefully. I *have* gotten to a point where I've reduced the number of crashes I've had by ignoring signs from my body that I need to rest.

While I'm overweight, it's the weight that I've been since I was 14, and my GPs don't seem to think that's what's causing the trouble (and I'd trust them on this, since my partner is also overweight, and they *do* think it's part of what's causing *her* trouble, so I can believe they aren't just biased one way or the other). I've still got surprisingly good core muscle strength, it's like I've been getting weak from the edges inward.

Oh, and I get regular therapeutic massage, and that helps with both muscle pain and energy, even though it's not a cure (and hasn't helped with the persistent knot in my right shoulder--neither my massage therapist nor I can figure out why that sucker won't relent). I've tried acupuncture, and might try it again, but I was finding that it made me exhausted for days afterward, and didn't seem to help.

Thanks again!

[JayEm]

So, I found a new neuro I love. Another round of MRI's - nothing showed up. But! She insisted I have another one - a Tesla-3 (the others were T-1.5). Bingo! My brain lit up like the fourth of July!

Interesting. I know the most recent MRI was 1.5. I didn't know that the level made that much difference. It might be worth trying to find a neuro who will talk to *me* (rather than mumbling while looking at a computer screen). I'm also wondering about a spinal MRI, since that hasn't been done, and some of my problems could be explained by compression lower down.

Thanks for the response!

[Toomnyhats]

And I *do* have allergies--the allergist says the food responses are due to my pollen allergies, and I'm getting allergy shots in the hopes of reducing my overall allergic response.

For pollen allergies, get some locally produced honey. The closer to your house the better. Eat about 1T every day - on your toast, in your tea, on a spoon , by whatever means you prefer. It will take several months but you'll see you pollen allergies reduced, maybe even disappear.

This obviously won't work if you are diabetic

[JerryD]

I think the vitamin D and B-12 deficiencies are a great place to start. But you know, there is probably a few other things out of balance. Did you have your cortisol levels checked with the other hormones ?
I take 5000 iu daily of D and a sublingual B-12 daily . And I'll bet there is a connection to endorphin production. I hope you find an answer soon. Good luck

[JayEm]

Thanks. I do use local honey, although it hasn't made much difference (perhaps because I'm so allergic to grass, and not just to the pollen part of it, or maybe because bees aren't as involved in pollinating grass).

And I do think my cortisol levels were checked, and were normal. (And I trust my GP to say if they aren't, since she checked in about even low-normal results.)

On the up-side, the neuro's office called today and said that he reviewed my results and wants to schedule an EMG. On the down-side, I think that the EMG is close to the most unpleasant test I've had done. So hopefully he's more professional than his office manner suggested.