What kinds of doctors should I see? (Bonus: guess that illness!)

In My Humble Opinion
1

I don’t *think *I’m asking for medical advice in a way that is prohibited. I want you to tell me which doctors I should see for these symptoms. Hopefully that’s acceptable. Also, if something leaps out at you illness-wise, please do suggest I look into it. My doctors have been unable to definitively diagnose me for about 8 years now, and I appreciate any advice/information that might lead to a diagnosis or more effective treatment.

So, in order of severity, these are my symptoms:

constant, debilitating fatigue/lack of energy (also, I need about 13 hours of sleep each night)

postural orthostatic tachycardia syndrome (as I understand it, my body is unable to effectively compensate for the effect of gravity on blood flow, specifically to the brain - rapid heart rate, low blood pressure)

light-headedness/feeling of my head being fuzzy

mild cognitive troubles, probably the result of the postural and fatigue issues, notably trouble speaking (I’m mostly fine in writing and thoughts, I just can’t seem to get the words out properly and hold on to them long enough to speak) and remembering words, especially nouns; trouble with concentration and processing information; short-term memory issues

feeling of being off-balance - need to rely on walls/banisters to keep me steady sometimes; at worst, I waver a bit but have never fallen

mild headache (also constant, but nearly eliminated when I lie down and relax all the muscles in my neck and head)

mild tremor (worse on the left side of my body) and random limb/head jerks

mild night sweats and facial/torso sweating (not related to heat, though I do always seem to be warmer than other people) (on worst days, my shirt is completely damp when I go to bed)

hungry soon after eating, even when eating healthy balanced meals as planned by a dietitian (spend a lot of the day hungry, not uncommon to get episodes of hypoglycemia if go hungry too long)

feeling that the tip of my nose is a bit numb - changes location a bit, happens a great deal of the day

feeling of pressure/slight numbness (difficult feeling to describe) on large (variable) patches of my head (often feels as though I’m wearing a tight headband, also daily and frequent

lips going tingly (not common, doesn’t last long)

very mild light and sound sensitivity

(this might be normal, don’t know) my skin develops brown spots (moles, sun spots) on places that have been irritated - most obvious one is the lovely rectangular patch of spots exactly where the sticky adhesive holding down/protecting my picc line (for intravenous antibiotics) used to be (had the picc line for about a year, this adhesive was changed weekly, and my skin was really irritated by the bandage being pulled off and by most of the cleaning fluids used on it)

probably more that I’m not remembering

I have celiac disease and am allergic to dust/dust mites, cats, dogs, and birds. I also have been using a bipap machine for mild sleep apnea.

Have had a great deal of tests done, nothing really of note. Although, my potassium came back a little low in the recent batch of bloodwork, despite taking a multivitamin and consuming several foods high in potassium each day. Also, I use a lot of salt on my food, though not an outrageous amount, and crave salty foods.

I’ve been seen an internist who has been treating me for lyme disease, but I haven’t been really improving and want to get some second opinions based on my symptoms. My list so far: rheumatologist, neurologist.

I saw a cardiologist recently who ran numerous tests and declared my ticker to be in excellent condition. I want to see someone who specializes in veins, if there is such a person. Phlebologist?

Any ideas/recommendations? Thank you very much just for reading all of that.

I’m female and 25, by the way.

2

You say “my doctors” but mention a single internist. Are there other types of doctors you’ve already seen? Have you seen more than one GP/internist? What diseases/conditions have been ruled out – i.e., has a doctor ever said, “You might have XYZ” and then upon further investigation said, “Nope, that’s not it.”

3

I am currently seeing the one doctor and another more local doctor for mundane health type issues. I more meant historically my doctors have been unable to diagnose me definitively - I was referred to a pediatric chronic fatigue syndrome specialist by my usual pediatrician, and the specialist referred me to my current doctor to definitively rule out lyme disease, which he (current doc) feels I probably have.

As for illnesses that have been ruled out, I don’t really remember any strong possibilities that were then discarded, it’s always been tests and bloodwork that really didn’t show anything abnormal and therefore no strong contenders ever emerged* (except lyme disease). No issues with my blood counts, thyroid levels, hormone levels (except mild corrected imbalances - no cortisol first thing in the morning, most recently), seemingly no viruses or fungal infections, no bacterial infections aside from the lyme disease, no parasites except possibly babesia (something you also get from deer ticks), no diabetes, not lupus or MS, no inflammation problems. That’s pretty much how you get to the chronic fatigue syndrome diagnosis (my other diagnosis, unless it’s really lyme) - everything common or obvious has been ruled out. I mainly figure if it isn’t lyme disease/babesia, it’s something fairly rare.

*Exceptions: tilt table test that diagnosed postural orthostatic tachycardia syndrome, and the colonoscopy that diagnosed celiac disease.

4

Endocrinologist and neurologist maybe?

Why a vein doctor?

5

Aside from CFS that’s you’ve already mentioned, I’m going to float Ménière’s disease before this thread gets closed…

6

From my ignorant layman point-of-view, there are three reasons my body might mess up regulating heart rate/blood pressure - heart, brain, and veins. The heart’s been covered and a neurologist covers the brain (right?). That just leaves the veins. (There was a theory mentioned to me years ago about blood pooling in veins that were too dilated or somesuch, resulting in the lack of adequate blood flow to the brain. (I should look up to see if I’ve been on any vasoconstrictors.))

Thank you for the suggestions, everyone. I’ll put them on my list.

7

Cardiologist
Dermatologist
Neurologist
Endocrinologist
Immunologist
ENT

You might rule out the

Oncologists
Podiatrists
Opthamologists

You’ve got a multi-organ system thing going, and it isn’t necessary for one thing to drive them all. People can and do have multiple, significant diseases that simultaneously affect multiple organ systems.

But it’s possible that immune-related diseases can have a cascade effect that can aggravate multiple systems.

The key is to see to it that your people are aware of each others information and diagnoses. Specialists aren’t always good at working across specialties.

8

Is your family doctor or internist getting the results of all the tests you’ve had? It’s important that someone be coordinating the lot.

Internists tend to be good diagnosticians, in my experience, so I hope yours has the full picture.

Hope you get a proper diagnosis soon and get fixed so that you can enjoy a long and healthy life.

9

Please don’t be offended by my response, but as an RN, I would advise you to perhaps consider a psych consult. A lot of your symptomology could be actual signs of depression or other possible problems that could be treated. At the age of 25 you appear to have an excessive number of ailments & semi-knowledge of tests (that most people would not ever even be aware of in a normal lifestyle). Just the fact that you feel the need to share this information on a message board, after going to multiple physicians, is, IMHO, a little on the odd side. Please do yourself a favor and ask for a referral. You obviously have good insurance.:rolleyes:

10

As someone who has a history of depression, I can add my voice to this request. Stress and depression can manifest in a whole host of physical ailments, and most of the symptoms that you’re having are ones that I showed during very dark times in my life. I attributed how I was feeling emotionally to these “undiagnosed problems”, but really, those problems were caused by the depression and stress that I was experiencing.

This does not mean that the ailments are not real or are “all in your head.” It means that a hunt by other physicians using traditional diagnostic methods may find nothing at all, and may actually endanger your health or life if those diagnostic methods are overly invasive when something else could be at fault.

At the very least, speaking to someone about how you’re feeling could help you deal with your emotions and stress over these health concerns. It may be that you have some real health problems that are being worsened by stress or depression, and it sets up a vicious cycle that you may need to break by treating mind and body. After all, the brain is an organ just like your heart.

11

Beautifully said, Ferret Herder–I tend to always come across a little on the snarky side–30+ years running the hospital halls.:wink:

12

I think the main thing is to work more closely with your internist or other primary care physician to evaluate you. If you don’t like the care you are getting from him, find another that will work with you.

It is your PCP’s job to coordinate your care. Going around to a variety of doctors without having someone talking to all of them can lead to things being missed or to unrecognized medication interactions.

I’d also agree that some of your symptoms may be psychologically-based. It is a common cause of such a wide array of symptoms, and atypical depression is more common in women. Once again, discuss with your PCP whether it would be appropriate for you to do a trial of an antidepressant or to talk to a psychiatrist.

13

Why the rolley eyes? I’ve never had any client with chronic health problems who didn’t also have some anxiety or depression, sometimes because they weren’t being taken seriously. I agree with the utility of a psych consult (with a psychologist specializing in people with chronic conditions), but primarily in order to rule out psychological masquerade (symptoms that look like psych symptoms but have physiological causes). The OP said that she has celiac and probably Lyme. Both autoimmune diseases and diseases like Lyme that can have neurological components can present in a confusing way that sounds like a psych problem. Medications can cause strange effects, too. I agree that an internist or someone to look at the whole picture would be helpful. But the basic rule is never to diagnose psychological issues before physical issues have been ruled out.

14

I would suggest that stress and/or depression may be a concurrent problem, considering the amount of things the OP is dealing with and an apparent lack of progress in moving forward in finding diagnoses. Starting with at least a talk session could be helpful in making her feel better in at least one way. But I agree with your comment, and that of others, that coordination, probably by an internist, is crucial.

(Could I put more commas in that last sentence? :smack:)

15

I’ll be sure to see that any visits to additional doctors are overseen by my primary physicians and that everyone is kept in the loop. Thank you for emphasizing that, everyone. And thank you very much, MoodIndigo, for the well-wishes.

I am very lucky to have very good insurance. I can see how my knowledge and posting on a message board could be red flags, but it’s really just from having had a lot of tests and done some research on chronic fatigue syndrome/lyme disease after being diagnosed (there are a lot of things that are recommended to look into - heavy metals, fungus, hormones, etc).

As for the posting on a message board thing, it’s not so much that I feel the need to share, it’s that I feel an obligation to myself to do everything I can to help myself get better, and the people on this board happen to be quite knowledgeable, so I figured I might get some good recommendations. I don’t really have a similar social group in-person that I could ask, and not having a lot of energy, being able to save myself the research looking up various medical specialties would be very helpful.

This is kind of my last hurrah. I plan to have specialists look into my various symptom categories as a second opinion type venture, and then, if nothing comes up that contradicts the lyme disease diagnosis, I’ll give treatment for that a shot and just resign myself to not getting better if that doesn’t work. For some reason, I can’t seem to believe both that I’ll get better any day now *and *that I should try to move ahead with my life regardless, and the second option is the only one that will get me anywhere so I have to give up the first, which requires giving this my best effort. I’ll always *hope *for a definitive diagnosis and cure, but after this, I won’t *expect *it anymore.

(The request for suggestions as to what my illness might be is a “why not, you never know” add-on.)

I am currently seeing a psychiatrist and have been seeing him (er, professionally, not as in dating) for about 4 years now. I’m also on an antidepressant. I think my shrink is quite good. He does cognitive behavioral therapy. Is that enough to rule out psychiatric illnesses, or should I get a second opinion on that too?

Just from my own experiences, I’m pretty sure depression isn’t the root cause. I do suffer from depression at times, but always from being unhappy with my life and physically incapable of doing anything about it. When I have enough energy to do work in that direction, I’m very happy. And consciously shifting my perspective and mood when I’m depressed relieves the unhappiness but really doesn’t improve my physical state, unfortunately.

I do have some problems with anxiety and stress (caused by the same thing as the depression - being 25 and very behind my peers and my own expectations for someone my age). I’ll bring that up at my next appointment with my psychiatrist, as well as question him on whether we’ve done everything possible to rule out psychiatric problems.

I also am on the recovering end of a brush with schizoid personality disorder. I certainly have had depression relating to that, but I think I’ve passed through that phase, for the most part. At this point, it’s something of a side issue, I think. It affects me socially and not having very much social interaction is part of the changes I’m working to bring about in my life, but I don’t think it’s an active contributor to my physical symptoms. I’ll double check with my shrink, though.

Thank you very much, everyone, for the doctor/illness recommendations and suggestions regarding psychiatric evaluation. I’m not at all offended, and it’s a very good point.

16

I don’t have any advice, but I really hope things work out for you, supergoose!

17

Glad to hear the clarification. Consider changing your general doctor or psychiatrist, or getting a second opinion, if it seems like you aren’t making progress. I’ve got a pretty high opinion of CBT in general (having a psychology training background myself, but not expressing anything resembling a professional opinion here) so hopefully that should lead to good things for you.

18

Thank you very much, and I really hope things work out for you too!

Will do! Also, which of my symptoms did you feel could be psychological? I’d like to ask my shrink what I’d need to do if those symptoms had a psychological cause. I don’t really have anything to lose (although if the treatment involves adding in more medication, that could be a problem) and at least it would have been definitively ruled out.

Thank you for all the advice/information you’ve given me. I hope to put it to good use.

19

This in particular is potentially a symptom of Addison’s disease:

http://endocrine.niddk.nih.gov/pubs/addison/addison.htm

Many of your symptoms do sounds as though they would fit with a diagnosis of Addison’s, especially since you say your 9am cortisol was low recently. Have you ever had a Synacthen test (where you have bloods taken, are injected with a drug called synacthen, then have more bloods taken 30 minutes and 60 minutes later)? This is usually done by endocrinologists (at least in the UK, I assume it’s the same in the US), so I would recommend seeing an endocrinologist if you haven’t already.

20

Well, this isn’t a professional psychological/medical diagnosis or anything resembling that, but fatigue, headaches, tingling/numb sensations, and cognitive issues were definite ones for me that did seem to be triggered by stress and depression. Naturally, these can all have physical causes as well. Those symptoms felt quite as real and important as anything with a more “typical” diagnosis does, and they were real.

I’m glad to hear you’re working on covering all potential causes here, and wish you the best of luck and care.