Discussions By Condition: I cannot get a diagnosis.

I know it's not depression. Long post, desperate for help!

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: jgold1975
  • May 29, 2009
  • 05:59 PM

I have been being treated for depression for more then 10 years even with my insistence that it is not depression. While I do have some symptoms of depression, I am missing some very important symptoms while my other symptoms are being completely ignored. I've been to general partitioners, Neurologists, ENT and an allergist. I've been given general blood tests, CAT scans, MRI's, and was tested for Addison's all came back normal except for the MRI which found a sub-arachnoid cyst in my left temporal lobe and was told it was about the size of a "deck of cards" and that while it might explain my reduction in sensation/feeling and muscle tone on my right side it is not effecting me an any other way.

I am 33 years old, professional woman, divorced, I have 1 child a son 13 (most of my symptoms started after I gave birth to him), I am 5'6" and weigh 130 lbs. Family history of heart disease, diabetes, Multiple Sclerosis and celiac disease.

So other then the issues with my right side I am also experiencing:
(I'm not sure if ALL of these symptoms are related but I want to provide a comprehensive list)
Profound chronic fatigue
Daytime tiredness
Chronic onset insomnia
Hirsutism (hair growth on upper lip, chin, chest and excessive amount of hair on legs for a woman)
chronic daily headaches (the headaches aren't really painful mostly dull pressure pain on my forehead, eyes and top of head. Feels as though my brain is expanding)
Pain relievers do not help the headaches.
Restless leg syndrome type feeling in right leg only (to which my neurologist said was just impossible.)
brittle nails
oily skin/hair
Acne
bruise easily
slow healing
scaring even with minor cuts
Low blood pressure
Hypoglycemia
cold extremities
Photophobia (not a fear of light, but sensitivity to bright lights. I need to wear sunglasses even on overcast days. Bright light intensifies my headaches.)
frequent diarrhea and general gastrointestinal discomfort, after eating my gut makes lots of noise not from the stomach but lower. Loud enough for others to notice.
Dizziness
Absent Seizures (confirmed by Neurologist)
I also frequently have a weird disconnected feeling sometimes it what I would call brain fog but other times it feels as though I am disconnected from my surroundings, as if I am dreaming or watching it on TV.


So every Dr I've gone to end up telling me I'd really benefit from an antidepressant. I'm about sick of hearing it and I then ask "Well what would you suggest since I've been on Prozac, Paxil, Cymbalta, Effexor, Remeron, Wellbutrin (then I continue on with the long list of antidepressants and other meds used off label for depression I've been on). The Dr will just give me this scathing look and tell me that I just didn't give them enough time to work. Errrr. I think 3 months - 1 year is long enough to give them to work. I also tell them that I lack some very important symptoms of depression I don't feel sad, worthless, empty, hopeless or suicidal. I also have not lost interest in thing I previously enjoyed (I don't do a lot of things I enjoy doing but not due to lack of interest but lack of energy).

Currently I am taking Klonopin helps with the seizures and helps me sleep, dexedrine which helps with the fatigue and daytime sleepiness and remeron which I don't think is doing anything. Other then these symptoms that are being managed all other symptoms persist and have gotten worst over the years.
I am at my wits end and am so tired of feeling this way! It's effecting my ability to work and I feel terrible for my son, I just can't do the things I should be doing with him and for him. The poor thing says "You're always too tired." or "You always have a headache." My son has Asperger's Syndrome so I think he needs me more then the typical 13 yr old and I'm just not able to do it.
Any suggestions would be appreciated. Thank you for reading, I know it was long but wanted to provide as much details as possible.

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9 Replies:

  • Oh, I also forgot to mention that shortly after my son was born I contracted Mono (Epstein-Barr Virus). And it has seemed to "flair up" a few times since initial diagnosis.
    jgold1975 1 Replies Flag this Response
  • go to an endrocronologist get complete blood work and also, this could be hormonally related.....sounds terriblemuch regardsboo
    bijous111 2 Replies Flag this Response
  • Not a doctor, or health professional, but I've had hormonal issues and anxiety/depression. So my thoughts: 1. Anxiety or Generalized anxiety disorder could explain the fatigue, tiredness, headaches, dizziness, gi issues, derealization, (that's the word for your last symptom), early insomnia and possibly the cold extremities? There's a real overlap in symptoms in GAD and depression, but with anxiety you wouldn't need the depressive thinking you're saying you don't have. But it's the same treatment usually - antidepressants and cognitive therapy plus relaxation techniques for anxiety. Specifically antidepressants that don't increase anxiety (e.g. not Wellbutrin). 2. Hypothyroidism - I assume you've had your thyroid tested, but if you have not - would explain the fatigue, tiredness, brittle nails, cold hands, headaches, low blood pressure. Hyperthyroidism could cause some of the others (like insomnia, anxiety and diarrhea). Sometimes there's an overlap in symptoms, and some people get hyperthyroidism followed by hypothyroidism afaik. 3. PCOS would explain hirsutism, acne, anxiety and depressive symptoms (which are commonly associated). 4. Cushing's would explain a lot of this too. Bruising, hirsutism, psychological symptoms, tiredness, acne, slow healing. If it's caused by a pituitary tumor, that might involve headaches and photophobia - but I'd imagine that the tumor would have to be large enough for them to see on an MRI (not sure) to cause that. 5. A lot of what you have is pretty common and nonspecific - headaches, fatigue, insomnia, derealization, diarrhea, dizziness (I assume you mean lightheadedness). Realize that things like chronic headache, chronic fatigue, irritable bowel syndrome, etc fall under a class of disorders called "functional disorders" which are really diagnoses where there is no known physical abnormality and which tend to be associated with stress, depression and anxiety. And with being a middle-aged woman. There's a whole complicated politics of these things, and showing up in your doctor's office complaining of a slew of them sort of throws you into the middle of a very long and involved backstory of millions of women who have done the same over the past century and the doctors who have no idea what to do with them - all of which you're probably totally unaware of. Also Some of your symptoms might be symptoms or they might be just normal variants. Is low blood pressure a symptom or just you? Scarring with minor cuts? etc. Sometimes it's really hard to tell. 6. But you do have to be tested for the obvious endocrine disorders. You didn't mention whether you've seen an endocrinologist, but you should. The hirsutism alone needs a workup. If your androgen levels are raised, my uninformed guess is that there's a good chance you end up with a diagnosis of like PCOS plus anxiety. It's probably not thyroid, since I would imagine that's the very first test they did and it's probably been done more than once. They need to do a couple of specific tests for Cushings too, which it probably won't be, since it's pretty rare, and it's symptoms are pretty common and there are a lot more people who think they have it than actually do. But they also should look at your pituitary in the MRI to see if there's a microadenoma there. 7. The thing that is clearly not normal or a variant or "functional" is absence seizures. Did the neurologist say they were epileptic or nonepileptic? Because I notice that you're not on an anticonvulsant and you say that klonopin, which is an antianxiety med, helps. Nonepileptic again implies caused by a psychiatric issue. 8. Which leaves another huge issue: seeing a psychiatrist. Not just for an accurate diagnosis. But more importantly, you're on three different psychiatric meds which are being managed by nonspecialists from what you're saying. (Or have you seen a psychiatrist?) Anyway the dex and the klonopin are especially troublesome. Dex can cause increased anxiety and insomnia, while klonopin can cause increased sleepiness and fatigue. Remeron is also going to cause sleepiness and fatigue. It's a sedating antidepressant. So your meds are maybe working at cross purposes? You're taking uppers and downers? Anyway that's a combination that should be managed by a psychopharmacologist for sure or you could get into trouble. And maybe some of your current troubles are caused by that combination. But don't stop anything until you talk to a doctor - every one of those meds can cause a nasty withdrawal. 9. Antidepressants don't work like magic. They're marginally better than placebo. Even moreso if you have anxiety - it takes higher doses to treat often, for one thing. Plus lots of the newer antidepressants are activating - thus complicated for anxiety especially initially. You need a very careful knowledgeable psychopharmacologist, who prescribes the right medication, goes slow with it, is careful to check for side effects, and knows when you've reached a high enough dose. And then you need basically a four-fold treatment on top of that: 1) psychotherapy (CBT especially) 2) Relaxation techniques 3) exercise - whatever you're able to do and that you can enjoy 4) Working on stressful situations in your life - you're a divorced single mother with a 13 year old son with Aspergers - that alone is hugely stressful and you feel guilt over not being there for him enough. Plus you're not doing things you enjoy. Changes need to be made here somehow. Support for you and your son - whether it's support groups, therapy, talking to the school guidance counselor, etc, and some attempt to add enjoyment into your life. Working on isolation if that's a problem (and it often is for single mothers especially who have health issues). You can combine some of this - for instance a yoga class may be something you enjoy, where you can take a break from your stress and focus on yourself, get some exercise, and where you can meet people. 10. You need a GP you can trust whom you see regularly to track your symptoms so you don't feel you have to focus on them all the time, but you also know they're being monitored and there's a plan for dealing with them and a plan for following up if they get worse. Because even if your symptoms are depression or stress or anxiety or all of the above, these are diagnoses of exclusion - they still need to make sure that you're being monitored, that your symptoms are being followed up, that everything else is ruled out, and both you and the doctor need to be dedicated to making you better and functional. If something changes, they need to look into that. In a word you need doctors you trust and who don't roll their eyes at you whatever the cause of your symptoms. 11. You probably know that chronic daily headaches are often caused by taking pain meds frequently (tylenol etc.) But if you don't know about this and are taking aspirin or whatever daily, look up "rebound headache." It can really suck.
    Anonymous 42,789 Replies Flag this Response
  • I have been being treated for depression for more then 10 years even with my insistence that it is not depression. While I do have some symptoms of depression, I am missing some very important symptoms while my other symptoms are being completely ignored. I've been to general partitioners, Neurologists, ENT and an allergist. I've been given general blood tests, CAT scans, MRI's, and was tested for Addison's all came back normal except for the MRI which found a sub-arachnoid cyst in my left temporal lobe and was told it was about the size of a "deck of cards" and that while it might explain my reduction in sensation/feeling and muscle tone on my right side it is not effecting me an any other way.I am 33 years old, professional woman, divorced, I have 1 child a son 13 (most of my symptoms started after I gave birth to him), I am 5'6" and weigh 130 lbs. Family history of heart disease, diabetes, Multiple Sclerosis and celiac disease.So other then the issues with my right side I am also experiencing:(I'm not sure if ALL of these symptoms are related but I want to provide a comprehensive list)Profound chronic fatigueDaytime tirednessChronic onset insomniaHirsutism (hair growth on upper lip, chin, chest and excessive amount of hair on legs for a woman)chronic daily headaches (the headaches aren't really painful mostly dull pressure pain on my forehead, eyes and top of head. Feels as though my brain is expanding)Pain relievers do not help the headaches.Restless leg syndrome type feeling in right leg only (to which my neurologist said was just impossible.)brittle nailsoily skin/hairAcnebruise easilyslow healingscaring even with minor cutsLow blood pressureHypoglycemia cold extremitiesPhotophobia (not a fear of light, but sensitivity to bright lights. I need to wear sunglasses even on overcast days. Bright light intensifies my headaches.)frequent diarrhea and general gastrointestinal discomfort, after eating my gut makes lots of noise not from the stomach but lower. Loud enough for others to notice. DizzinessAbsent Seizures (confirmed by Neurologist)I also frequently have a weird disconnected feeling sometimes it what I would call brain fog but other times it feels as though I am disconnected from my surroundings, as if I am dreaming or watching it on TV.So every Dr I've gone to end up telling me I'd really benefit from an antidepressant. I'm about sick of hearing it and I then ask "Well what would you suggest since I've been on Prozac, Paxil, Cymbalta, Effexor, Remeron, Wellbutrin (then I continue on with the long list of antidepressants and other meds used off label for depression I've been on). The Dr will just give me this scathing look and tell me that I just didn't give them enough time to work. Errrr. I think 3 months - 1 year is long enough to give them to work. I also tell them that I lack some very important symptoms of depression I don't feel sad, worthless, empty, hopeless or suicidal. I also have not lost interest in thing I previously enjoyed (I don't do a lot of things I enjoy doing but not due to lack of interest but lack of energy). Currently I am taking Klonopin helps with the seizures and helps me sleep, dexedrine which helps with the fatigue and daytime sleepiness and remeron which I don't think is doing anything. Other then these symptoms that are being managed all other symptoms persist and have gotten worst over the years.I am at my wits end and am so tired of feeling this way! It's effecting my ability to work and I feel terrible for my son, I just can't do the things I should be doing with him and for him. The poor thing says "You're always too tired." or "You always have a headache." My son has Asperger's Syndrome so I think he needs me more then the typical 13 yr old and I'm just not able to do it. Any suggestions would be appreciated. Thank you for reading, I know it was long but wanted to provide as much details as possible.Where are you writing from. My boyfriend has VERy similar symptoms and a LARGE arachnoid cyst and Dr.s here will DO nothing!!! He's in extreme pain...etc....my email is: mwreggitt@fcmhs.ca
    Anonymous 42,789 Replies
    • September 17, 2009
    • 02:29 PM
    • 0
    Flag this Response
  • I think you both should look up arachnoiditis, read all you can & see if symptoms fit. Many Drs will not acknowledge this or have no idea what it is since it is "supposedly" so rare there is little taught about it. An excellent site is cofwa.org(I think) & they have articles written by Drs (one of whom has this herself) Good luck,best wishes & hope this helps.
    Anonymous 42,789 Replies
    • September 18, 2009
    • 04:36 AM
    • 0
    Flag this Response
  • I think you both should look up arachnoiditis, read all you can & see if symptoms fit. Many Drs will not acknowledge this or have no idea what it is since it is "supposedly" so rare there is little taught about it. An excellent site is cofwa.org(I think) & they have articles written by Drs (one of whom has this herself) Good luck,best wishes & hope this helps. HelloI am an arachnoiditis sufferer, I have been for over thirty years. I suggest to you to also read the following sites that are full with sound medical information. They will help you determine if you have arachnoiditis. Pls remember the only safe way to be diagnosed is to have an mri preferably with contrast.Here are the sites:www.burtonreport.comwww.theaword.orgForums:http://health.groups.yahoo.com/group/arac2009/http://health.groups.yahoo.com/group/ARACH_FRIENDS/good luck to youamitieslouise vermeirenart@gmail.com
    vermeirenart 1 Replies
    • September 19, 2009
    • 02:47 PM
    • 0
    Flag this Response
  • DISCLAIMER: I am not a doctor or a health professional of any sort. Take my advice with a pinch of salt.Well, as someone who's suffered from major depression (and I mean depression that makes you feel like you've gone to ***l), your symptoms, and lack of certain key symptoms, don't match some of the key symptoms.Let's see: no feelings of despair, no anxiety, no loss of appetite mentioned. I had all three of those (although I am talking about major depression, not the regular stuff). Fatigue can set in with major depression, but when it happened to me, it was combined with anxiety over something that was bothering me. Also, although I had fatigue, I do not recall having it all the time, and I certainly don't recall having insomnia. The level of fatigue you're having (you seem to have 2-3 fatigue symptoms mentioned) seems worse than what I had. I'd start looking for other causes than major depression, especially as you've tried a lot of meds (although those are tricky to get right).I just saw that you said most of your symptoms started after giving birth to your child? I'd get the child diagnosed for any potential illnesses, there may be clues as to what happened to you. I'm wondering if something was passed from your child to you. As this child has AS, then it's definitely worth looking into (I have Autism myself BTW).With that multitude of symptoms you put down, many of which I did NOT have during depression (nearly everything you listed), there is probably something else wrong. Doctors that say it's depression clearly lack the experience and expertise of what depression IS IMO.Regarding that sub-arachnoid cyst, do you think that is causing the pressure headaches you stated? IIRC, that's a tumour of some sort, can't it be removed? (I imagine doing so will be tricky, if it's THAT deep in your brain though, based on what I've seen in this surgery game called Life and Death 2: The Brain, although it's 20 years old). Are the headaches getting progressively worse? If this is the case, you'll definitely need a diagnosis with an MRI scan or something at the very least, and the image(s) from it will need to be compared with previous images to check for growth. Expanding brain tumour = Bad news for you. If this *IS* happening, you may need it surgically removed, FAST. One thing that game reminded me of, brain tumours in it caused aggravated reflexes on the opposite side of the body. I wouldn't be surprised if testing the reflexes on that side of the body caused large jerks (compare it with the right side of your body).A psychiatrist should be able to diagnose (lack of) depression. Needless to say, good medical history, especially medication (what types and dosage), is essential here. Also, you should probably state what pain relievers you've attempted taking. Aspirin only cuts it for mundane headaches I think.I'm concerned that you seem to be getting unusual activity in your bowels (or whatever it is that's below your stomach), you'd need a doctor with a stethoscope for that at the very least, which may lead to CT/MRI scans around that area.OK, my advice:Find a *GOOD* hospital, and try to find a specialist in diagnosis. Make sure you get a full physical exam, Q&A session (be sure to mention any and all symptoms, even if they seem totally irrelevant, don't rely on your doctor asking for all of them). The physical exam should include a stethoscope being used on all parts of the body where it's normally used (lungs, heart, and stomach, and bowels at least). Make sure your doctor investigates all these areas at least. Also allow the doctor to look for external abnormalites (if you notice anything odd externally yourself, such as bruises, make sure the doctor sees it. Don't rely on the doctor to be thorough). I'm almost certain major imaging tests will be required, not just of that cyst, but perhaps of your bowels as well.
    Anonymous 42,789 Replies Flag this Response
  • Hi: I hear how frustrated and desperate you must be feeling. I have been there. My daughter has been there. My sister is still there. After doing a great deal of research I found a website www.yeastconnection.com It has a questionaire which, if answered as a history - so yes to everything that has ever been true, will give you a good idea if this is the underlying condition of your body that is giving rise to all these symptoms. It is a causative factor in postpartum depression, your symptoms, including the unwanted hair created by the hormonal imbalance from your cystic ovaries, your family's symptoms, including autism and aspergers. There is also a children's questionaire www.jigsawhealth.com Unfortunately the treatment outlined in Dr Wm Crook's brilliant pioneering work is outdated. This condition can now be readily treated with a product called D365. You can further check on whether this could be the underlying problem by stopping feeding the yeast for 2 weeks by essentially removing all sugar, including artificial replacements and fruit, yeast, wheat, dairy and processed foods from your diet. What does that leave - vegetables and meat. Most people start to feel better in 4-5 days. Unfortunately, as soon as you revert to a more normal diet the symptoms will return. If you do feel better, contact me through wrong diagnosis, and I will be more specific in exactly how to rid yourself of this toxin which is robbing your body, and your son's of nutrients, creating cravings, and all that you list. It will take about 6 months to return to health but you will start to feel better almost immediately. I wish you the best. Just to let you know I no longer feel I could die before the day is out, no longer have allergies, irritable bowel syndrome,menopausal symptoms. I do have energy, creativity, and an amazing zest for life. My daughter has no more migraines, allergies, rashes, aches and pains, or her complete inability to see any view point but her own.
    candid 17 Replies Flag this Response
  • I also tell them that I lack some very important symptoms of depression I don't feel sad, worthless, empty, hopeless or suicidal. I also have not lost interest in thing I previously enjoyed (I don't do a lot of things I enjoy doing but not due to lack of interest but lack of energy). Yeah you dont have depression but i think you have an illness which is sometimes misdiagnosed as depression.... chronic fatigue immunity dysfunction syndrome (CFIDS). I've noticed in the CFIDS support groups that often people can be affected more one side than the other. i myself at times find one side more affected than the other side at times i've had leg drag with one just one side due to the CFIDS. The things in your post that point to its highly likely that you have CFIDS is the wide range of symptoms affecting many different parts of your body and the types of symptoms.. and the connected to CFIDS illnesses you have. * Low blood pressure (but not high) is very common in CFIDS people... * Hypoglycemia (but not diabetes) is very common in CFIDS.* seizure like eposides can happen in CFIDS. * Irritable bowel syndrome (which you could have by your symptoms) is extremely common in CFIDS. (look up "Irritable bowel syndrome")* Raynauds disease is very common in CFIDS (you could later find yourself with this with the cold extremetories). People with CFIDS also get your other symptoms eg photophobia, dizziness, headaches, slow healing, brain fog etc etc. im quite sure you have CFIDS. Check out http://wwcoco.com/cfids/bernesx.html (symptoms based on studies). On top of all this.. your history also strongly fits with CFIDS.. Mono is strongly connected with CFIDS.. 10% of those who have Mono (myself included) end up with CFIDS. ohh.. and the Klonopin you take and find helps. Klonopin is one of the medications that many world famous CFIDS experts recommend for their patients!! (i think Dr Cheney recommends this still) .. Anti-depressants can make CFIDS patients feel worst or may not help at all unless one has depression with it (which is sometimes the case. Just trying to deal with a major illness is enough to give one depression).
    taniaaust1 2,267 Replies Flag this Response
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