Referred to a psychiatrist

[khaarina]

I've been in limbo 9 months now and after seeing 9 specialists for various symptoms, my GP has referred me to a psychiatrist. He said that he was concerned about some kind of dementia because of my worsening cognitive issues such as memory loss and difficulty concentrating. Problem is, I'm only 30 so the chances of that are extremely low. Because of all my other symptoms, I am pretty sure I have MS and the cognitive issues are brain fog, but I don't want to say this to my doc because I want him to explore all possibilities in case I am wrong. However, I'm worried that this decision to send me to a psychiatrist is the beginning of giving up. This is the only doc who has made a genuine effort to figure out what is wrong with me, the last thing I want is for him to give up on me. Am I just being paranoid? Do you think I should tell him that I think I have MS?

[gomer]

IMO it could go either way.

I was sent to the shrinks at the Va back in the mid 80s. They said I wa not nuts or even depressed. One would THINK that after this the GM docs would have listened or at least tried to find out what was wrong. They DID NOT. they simply ignored the shrinks as well as me.

For me it was an alert eye doc that opened the MS can of worms that started the road to a formal MS dx, by the same VA only 25 years later.

I THINK it might help if you go in with a positive approach, seeking an honest answer. If the shrink, after eliminating purely mental causes/issues, maybe your GP will send you to a better neuro specialist or even a clinic seeking answers.

Like I said it could go either way, try and not be paranoid about seeing a shrink (that could hurt), it just might be your ticket to a more complete workup and proper testing for an accurate Dx. Which is what you NEED before proper effective treatment can begin.
Gomer sez good luck!

[owlnona]

I think I would ask what he thinks. Have you been to a Neurologist? Have any tests for MS been done?
I saw a psychiatrist 4yrs.ago as I was very depressed due to several things. She was wonderful.
Keep us posted God Bless Nona Judy

[mjan]

Really? Really...sounds like he isn't sure what to do now.Tell me you are NOT seeing a MS neuro correct?

If he's thinking its some kind of dementia you need a neuro-psych eval..amazing way to figure out whats going on as it measures your deficits, like memory issues, concentration. TRUST me a psychiatrist will not do testing but a mental health evaluation. Psychiatrists will rule OUT mental health issues/disorders or in if that's the case and offer RX. Certain psychologists are trained to do these neuro psych tests.

Good luck hon, know that we care. Let us know how this turns out ok?

Hugs, Jan

[SNOOPY]

If he's thinking its some kind of dementia you need a neuro-psych eval

Jan is correct. A Neuro-Psych evaluation/testing would be appropriate if Dementia is suspected. It is done by a NeuroPsychologist not a Psychiatrist.

I had a neuropsych evaluation/testing ordered by my Neurologist for suspected Dementia. For me, it was not dementia but some serious side effects of a medication I had been on for about a year and a half.

It is possible your PCP is concerned about mental health issues that could cause "brain fog." There can be many causes for cognitive problems. Cognitive problems can be caused by fatigue, stress, depression and even hormonal fluctuations (PMS).

If you are concerned about having MS then open up a conversation with your doctor about your concerns...He's not a mind reader

[kingrex]

I'm curious as to what the 9 specialists have told you - you actually have 9 distinct health issues concurrently? Would you mind sharing what they are?


rex

[khaarina]

Okay, here are the details for those who asked (it is long and very detailed, so feel free to skim)

Neurological?

· Pain in arms and legs (burning in forearms and thighs, aching calves, localized stabbing upper left arm)
· Tingling in arms, hands, legs, feet, and sometimes pelvic area
· Weakness in hands and forearms upon waking
· Twitching muscles
· Intention tremors in hands, feet, legs
· Adie’s Pupil in right eye
· Jittery/wired feeling
· Problems with concentration and memory
· Back itch when I lay on my stomach

TMJ related?

· Sinus pressure and allergy-like symptoms
· Chronic tension in neck, throat, jaw, and tongue
· Eye pain and ear pain
· Numbness in roof of mouth, bridge of nose, and along teeth

General:

· Insomnia
· Fatigue
· Headaches
· Dizziness and nausea
· Cough (especially while lying on left side)
· Choking while swallowing liquid
· Chest pain, tightness in chest, shortness of breath
· Rapid heart rate and palpitations (usually at night)
· Excessive sweating and night sweats
· Swollen gums
· Chronic constipation
· Sensitivity to heat, bright lights, and strong smells
· Cold hands and feet
· Loss of appetite
· Adult acne
· Abdominal pain (both sides just below ribs)
· Urinary Tract Infections and yeast infections (recurring/persistent)

And this is what my docs said:
-neuro said it might be Fibromyalgia, but I've had many new symptoms since I saw him last.
-cardio said possible POTS but didn't order any further workup.
-endo said I have maybe it's an anxiety disorder. I'm also hypothyroid but it is in check with Levothyroxine.
-E.N.T. said I have TMJ
-G.I. did a colonoscopy and it was normal. I also have a slightly fatty liver.
-opthalmologist said I have Adie's pupil in right eye and torturous retina blood vessels.
-The sleep study specialist said I do not have sleep apnea, but I snore (which is new) and I move around a lot.
-I also have referrals to a urologist, but I can't find one here that accepts my insurance, and a ob/gyn to check out my Essure implants to see if they might be causing some of my problems, but no one seems to know much about them in my area. And now I have new referrals to an oral surgeon for TMJ and a psychiatrist for cognitive issues.

These are the tests I've had done:
-Mri brain and cervical spine w/ and w/o contrast (normal)
-colonoscopy (normal)
-abdominal ultrasound (normal)
-renal ultrasound (normal)
-several x-rays of neck, chest, abdomen, left arm (all normal)
-several EKGs (all normal but one)
-holtor heart monitor (showed some sinus tachycardia and a few palpatations)
-echocardiogram (normal)
-CBC and tons of other blood and urine tests checking for diabetes, vitamin deficiencies, allergies, Wilson's disease, thyroid levels, and some other stuff. These showed inflammation, temporarily high copper serum. Here is a list of the abnormal ones:

-CBC w. Differential MCH: 31.5 (26-31) High
-PC BMP: PC Glucose: 107 (70-99) High.
-TSH: 7.380 (0.450-4.500) High
-HCT 35.2: Low
-MCH 31.5: High
-Lymphs 23.6: Low
-TSH Screen 5.835: High
-Prolactin 19.1 (4.0-15.2) High
-Sedimentation Rate, Modified Westergren 49 (0-23)High
-Ceruloplasmin Results: 37.4 (15.0-30.0) High
-C-Reactive Protein (CRP), Quantitative 6.1 (0.0-4.9) High
-Capsid Antigen (VCA), IgG >8.0 High
-Copper, Serum or Plasma 179 (70-155) High
-Metabolic Panel (14), Comprehensive: Creatinine, Serum 0.69 (0.76-1.27) Low

It is really looking like my GP is beginning to think this is some kind of anxiety thing. I am kind of shy, so I might seem like an anxious person but most of the time I am totally calm and I'm not depressed. The only abnormal anxiety I have is due to this illness. We have already tried several different types of anti-depressants and they haven't changed a thing, and besides I REALLY doubt that all these symptoms could be connected to anxiety. Some, maybe, but not all of them. I know there is something else going on and I'm getting so sick of docs giving up and falling back on anxiety again and again. I don't know. Honestly, part of me wants to give up too.

[Thinkimjob]

A good-sized chunk of your systems could be related to anxiety, not that I'm trying to get you on Valium.
The physical ones, having just googled fibromyalgia, sound a lot like that.
You passed all your big medical tests. Abnormal blood test results are pretty normal.
Something's wrong. I hope they find out what.

[mjan]

Wow that is some list. Made me think of making my own list.

Did you look up POTS? I have Dysautonomia which includes a sudden drop in BP, feeling faint. Cardiologists usually do the referral. BUT there are only a few neuros who specialize in Dysautonomia and have a lab to test you thoroughly. Not too many docs are familiar with making this referral and I do not know if you'd even have such a neuro in your area. I was lucky that my PCP had a mother with Dysautonomia and got me into this specialized clinic. AND he also dx me with another autoimmune disease caused Sjogrens. If I would've been DX with MS right away I do believe some of these rare conditions I have (3) would have gone undiagnosed/untreated.

Not sure if you have MS, but you do have a lot of symptoms. I think many docs blame symptoms on anxiety without doing a thorough eval by a psychotherapist or psychiatrist to rule it in or out. Honestly I believe its a cop-out by making an Anxiety diagnosis without even doing a proper eval for it.

But know I feel for you, and hope you can find answers soon. Just know you may have more than one thing going on and it may not even be MS.

Gentle Hugs, Jan

[Redwings]

Hi khaarina:
You have a complicated case. Even though you're tired of seeing doctors, you still have a long way to go to get everything worked through.

You can tell your neurologist that you think you have MS, but 1) there are obviously other things going on that have nothing to do with MS and 2) you haven't mentioned anything in your testing that strongly indicates it.

There are indications of why what you have may not be MS.
1) It isn't typical of MS to strike bodywide with an abundance of widely diverse, nonspecific symptoms.
2) Your brain and cervical MRIs are clear. Even though you didn't have a thoracic MRI, the vast majority of your symptoms aren't controlled by functions going through the thoracic spinal cord, so even if there are MS lesions there, knowing about them offers no help in diagnosing everything else.

If you'd like to pursue the MS piece of the puzzle, it would be worthwhile to be worked up by an MS specialist. Even if you do have MS, there are still many other problems to be investigated. MS might be an answer, but it isn't the answer.

Conspicuous in its absence is a mention of a rheumatologist in the list of specialists you've seen. Your test results indicate the presence of inflammation, and rheumatology is the specialty that deals with inflammatory conditions. Also, rheumatology is the specialty that primarily deals with fibromyalgia. For your neuro to say that you "might" have fibromyalgia and then not refer you to a rheumatologist for further workup is odd. It's also odd that your GP didn't refer you with the combination of inflammation and possible fibromyalgia.

It doesn't seem like your GP is giving up on you. It sounds like she's just following the logical progression of investigation, like a flowchart -- if yes do this, if no do this. You have symptoms that aren't supported by (and in some cases contradict some) test results, and the next place to look is psychological factors.

There are a lot of things about your history and test results that just don't jibe, so it's understandable that you're feeling frustrated and defeated. It might be that your local doctors aren't set up to investigate further or work together well enough to get to the bottom of what's going on. If the psychiatrist doesn't come up with a direction to go in (and even if s/he does), it might be time for you to see a large medical group (e.g., Mayo, Hopkins, Cleveland Clinic, Harvard) having a multidisciplinary team. You might be able to petition your medical insurer for an outside consultation since your local docs haven't come up with much.

It isn't over just because your local doctors may not have a lot of experience with complex cases like yours. There are other doctors who do. Giving up means you've given up not on your health, but on yourself. Take a breather, but don't give up.

[LisaL77]

I hope you find the finish line to a diagnosis at some point. This sounds like a maddening journey. Good luck to you.

One of my symptoms - I have pain in my ear, too. Also the jawline. Diagnosed with Trigeminal Neuralgia and taking Gabapentin for it.

[onlyairfare]

I happened to be seeing a psychiatrist at the time I was diagnosed with MS and a few other serious medical problems. Though I was not having cognitive issues I did find it very helpful to discuss all my medical concerns with a psychiatrist.

I'd agree though that you would and possibly should be sent to a neuro-psychologist for specialized testing of your cognitive fog, as psychiatrists might order them but don't actually perform the testing. Depending on what is found, helpful treatment strategies could be initiated, even while the various specialists are looking for a specific diagnosis.

I agree with Redwings too that it looks as though you have some sort of inflammatory issue so the rheumatologist can help with the fibromyalgia and also any inflammatory disease.

It also looks as though you may have a thyroid problem, given that elevated TSH (Thyroid Stimulating Hormone); looks like it measured high on two different tests? That may indicate hypothyroidism, which is something your primary care might treat and it could account for some of your symptoms.