Undiagnosed Conditions

[livingwith]

I have been living with this for over 2 yrs now and seen many Drs and have had extensive test done. I have under gone a single masectomy and a 3mm cyst was found in the lower part of my brain. I am exhausted of all the Drs and tests but am still searching for an answer. My symptoms are tingling and prickling feelings all over my body, constant headaches, LOUD buzzing in head or ears, eyesight has worsened, dizzy spells, not able to function normally. I am currently under the care of a Neurologis...Read the full article

[geri1264]

Hi, you did not mention where you are from and i am sorry you are going thru all of this but like you said, there is hope!
I know you mentioned that you had a cyst removed from your brain but I highly doubt that is the cause of your problems. i am glad you are seeing a neurologist too. I am not a doctor but a patient who has gone thru some similar situations as you . As for the loud buzzing and ringing....it is called tinnitis and can be treated by a real good ENT. Mine has me on Dyazide for that and the fact that my ears and eyes do not balance with each other correctly. You may want to ask the ear doctor to set up an appt for a balance test of your ears, it can't hurt. The Dyazide has helped me tremendously. I still get the buzzing but not often and it doesn't last as long either. (i am also hard of hearing and wear a hearing aid so that is bad enuf,lol!) As for seeing the neurologist, I see mine for my headaches. I take Topomax for mine and it does help. i don't wake up with those awful headaches anymore. I do wake up with other headaches now due to bulging discs in my neck and that is being taken care of as we speak.
Neuropathy also comes to mind....I have a friend who has the tingling as you but she has pain as well so you may want to have some nerve testin done too.
I know you mentioned that you have been to umpteen docs but you did not mention what for. I would love to be your support but I also need to know where you have been and what for . we can work together i am sure.
I live in Michigan and see some WONDERFUL doctors here so, I can offer great advice to you because of my experience with them.
Hope we talk someday soon!
Keep the faith ok?
Geri

[sersitusAustralia]

Responding to the last 3 posts.
SYMPTOMS - The symptoms described in these posts are 'signs and signals' that are found in many many many systemic 'syndromes' that manifest in all 3 fundamental 'systems' (neurologic, hormonal, immune).Because they are so variable and so many (and so common past age 40) , doctors tend to focus on one set and diagnose according to that. I have seen diagnoses ranging from cancer to 'it's all in your head', from 'early signs of disease' for various body parts to obscure enzymatic and genetic distortions diseases, and through all the controversial syndromes that nutritional science , herbal and other alternative medicines focus upon: fibromyalgia, chronic fatigue syndrome, metabolic syndrome, syndrome X, adrenal exhaustion, IBS, etc. etc. and to the wholistic approach of anti-ageing medicine, for which these symptoms manifest systemic dysfunctions of the 3 defined systems.
DIAGNOSES - This mess of medicine makes it impossible to obtain clear, unchallenged diagnoses and correlate treatment. It also creates a blindness: doctors see their particular type of favourite tree. Another doctor prefers another style of tree and diagnoses differently. We then spend our time visiting doctors with different approaches that do not match, who offer us different treatments just as ineffective, we feel they 'misdiagnose' because each of them ignores some aspects that we feel are important. In other words, they see one tree but not the whole forest. This hides a simple basic fact: such symptoms (with one's particular set of more visible ones) are 'signs' that the entirety of the basic vital functions is not working well any more, and signals 'given by' each of these physiologic-metabolic-behavioural aspects of 'my body': sleeping, breathing, eating, response to stress and strain, posture, the brain... and water. If the symptoms happen to be slight, difficult to detect with technical medical tests, doctors tell us there is nothing wrong with us, nothing to do about it.

I am one such patient,and I have suffered all sorts of 'little pains' for my entire life, never received any help until now,when I am sick enough that nothing works properly any more. My diagnosis has shifted from mere statements (in my youth) about a 'sensitive brain', a 'tendency to possible epilepsy', about my being neurotic, emotionally imbalanced, or hypochondriac (I am female) or even lazy and 'imaginary sick'... and eventually, over the past 10 years, from CFS to fibromyalgia, to neuralgia, anxiety-depression, copd, menopause, , 'it's just ageing', to a near-cancer (all that with developing damage to my spine, considered 'inevitable')... and in the end, still no help to my fundamental difficulties with dehydration, breathing, and pain.
WHAT TO DO?
I took matters in my own hands, and spent 10 years learning about medical frameworks of explanations, until I can understand what is happening to me.
I traced my troubles to hormonal imbalances related to being female and how medicine treats women, which leads to anti-ageing medicine use of 'bioidentical hormones' (try it, it's worth it, much less side effects) and my other difficulties (immune, nervous, pain and vital functions) to a 'priming' of my brain that deeply affects and triggers my water metabolism. Hence my recent interest in nephrology.
I found some ways to restore my entire water metabolism, which affects and improves everything else. The body cannot function properly if 'fluid balance', 'electrolytes', and 'acid-base balance' ... are 'imbalanced'. Not the enzymes that govern all the reactions, not the gene expressions, not vital functions as basic as sleeping, breathing, eating, drinking, and posture. And without a well-working water metabolism, we 'age' from the day we are born, and it just keeps getting worse, destroying quality of life.
I won't give advice or miracle cures here, but I will suggest this:

-understand your own system, and use doctors as an 'advisory team', to answer your questions and do tests you need to know what's going on, to know what each pain corresponds to,a nd to provide specific help with particular difficulties that are more problematic. That requires you to observe your behaviours and internal sensations.

-look for disease names that relate to the symptoms you experience, and eventually, you will find that the most constant signs and signals in your entire life related to certain states of water metabolism. That can give clues to doctors on how your water metabolism is dysfunctional and how to help it, and therefore help your entire system.

-use the most 'basic means' at your disposal to improve vital functions: drink, breathe, exercise gently (walk, swim), be in sunshine every day, take time peaceful outdoors, improve your sleep.

-lastly, if there is a problem of susceptibility or high reactivity to stress, look for how your brain-body axis was 'primed' at puberty, in childhood or at birth. Understand the 'HPA axis', (hypothalamus, pituitary, adrenal... and kidneys). This involves, of course sex and stress and other hormones, and neurotransmitters. You might find clues to suggest a way of 'unpriming' that.

Hope this helps.

[geri1264]

The information was helpful and I will keep it in mind. I too was referred to as a hypochondriac but only by my sister who is known to think she knows everything yet she has problems of her own.

However, I just happened to be at the right doctors at the right time when i was going thru all my illnesses, i was admitted in the hospital for severe headaches and then was told I had a bad case of sinisitus that required surgery and I believed that cause my face did hurt but i thought it was because of the headaches. Testing was done and they thought I had MS but turns out the white tissue they saw was scarring from my hearing loss due to my mother having had german Measles when she was pregnant with me so, they gave me "cocktail meds' for a few days (which i slept for the most part) and then put on Topomax. That helped the headache problem.
The tingling is caused by the bulging discs in my neck due to an accident I was in in 2002 and is now creeping up on me. They want to do an Epidural Injection there but as i read up on it, I am beginning to think, I 'd rather stick with therapy for they can cause the neck to feel worse. so with that aside, I Have a decision to make.
As for the ringing, it is very common, it is called Tinnitis and is caused by various things. It started when i was only 26 and it scared the daylights out of me. it lasted for a long time and being I wear a hearing aid, i still had trouble hearing things because the ringing muffled it out. I could not even use the phone! This went on for many many years, it would come and go and my one ENT would give me the Medrol dose pack, sometimes it worked sometimes it didn't so I learned to cope with it and asked others to cope with me.
well, while I was in the hospital as I mentioned above, I brought it up to the ENT who saw me there and he said he was very interested in the case and worked with me after I had the surgery. We did the balance test, the whole nine yards and he put me on the Dyazide, it started to help alot. Yes, I drink alot of water as well for it has always been a regimen in my daily diet. So I must say, I am quite relieved by all of this stuff, it was not all "in my head" and I am now doing alot better. I still get the ringing now and hen but not as bad and not as long.
so, I am just explaining what I have gone through and thought it may help the person who is going to all of these doctors and her best bet is to stick with one doc who works with other specialists as a team like mine do. That way , she doesn't have alot of different diagnose's. It is tough on you emotionally and mentally when all of these things are going on and can affect you physicaly as well since it wears the body down.
So, like I said before, there IS hope out there, just need to be patient and find the right specialists who work together as a team and look fwd to a positive future. Always remember to take it one day at a time too!