Discussions By Condition: Cardiovascular disease

need help with diagnoses

Posted In: Cardiovascular disease 30 Replies
  • Posted By: flowerfloosey
  • November 4, 2006
  • 10:11 PM

I have a complicated medical history. I am 55, overweight and out of shape. I have had a total hip replacement and soon will have another.

Two years ago, I started feeling very fatigued. I became heat sensitive, had excessive sweating, urine feels hot when I do anything physical, numbness and tingling in hands and feet, postural hypertension, wildly fluctuation of blood pressure, palpatations, fast heart rate, left sided headaches. subjective weakness along with weakness in left leg and arm.

I have been to every doctor known to man. They have done 3 lumbar punctures and have found 12 oligoclonal bands in my spinal fluid not in my serum which is pretty specific to ms. I have had at least 5 mri scans of brain and t-spine, and spinal cord that show NO leisons. The doctors have done all the blood tests to rule out all the inflammatory disease along with lyme. My chest exray is normal.I have a vague feeling of something under my right rib cage that feels like a fist when I am in certain positions especally leaning forward of squatting. They have done ct scan of abdomin, small bowel followthrus and abdominal ultrasounds.

I have developed chronic sinus infections off and on for two years. The latest started in summer. This fall I finally asked the ent to culture it and is came back with pseudomonas aeruginosa. I now have been on cipro and saline gentomician for weeks. I have had ct scan of sinus that show partial opacification of spenoid sinus. I have been to allergist..have no allergies. Been to sinus institute at stanford u and they say sinus is minimal disease.

This spring the ms doc ordered an acth test that came back low. I was referred to an endocrinologist who did the pit stim test twice and dx me with secondary pit insufficiency. He put me on hydrocortisone and told me I would feel much better. I didn't so he kept increasing the dose. I still feel weak and dizzy, especially when I stand up.

I finally went to a new endocrinologist she thinks that I never did have a pit insufficiency..I had had three lumbar injections with cortisone around the same time as the original sample testing for acth was done. She is now testing me for pheochromocytosis. But from what I read..there is no connection with the nervous system that would relate to the abnormal spinal fluid which is still scary. I have developed ligament sorness in foot and shoulders and tenderness on the bones in hands and feet. My iron binding capacity is high..452. My neutrophils are mildly elevated.

I am sorry this is so long. I am so weary of going to doctors. No one seems to know what is wrong with me even at the ms clinic at ucsf. I am not even sure how to proceed. I have become a couch potatoe..am so weak at times I just stay in bed. I try to get up and do things and then I am dizzy or too tired to even grocery shop. My life has come to a halt. I have two beautiful grandchilden and a nice hubby and I love to garden and am involved in my community. I don't feel depressed..just weak.

Any help would be appreciated!

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  • sorry, I forgot one thing..I have had a heart workup and it shows only a nuisence irregular heartbeat. I wore a holter monitor and have had a cardiolite test on two occaisions that were normal.sometimes my toes look blue and have one time where the ends of my fingers looked dusky. This was in the doctors office and she noticed it. I also have a place on my scalp that is tender and throbbs sometimes. I have developed both vertical and horizontal lines on my nails. My hair is falling out. Thanks for reading this
    flowerfloosey 23 Replies
    • November 4, 2006
    • 10:13 PM
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  • Hello, have you had a Glucose Tolerence Test done to see if you are Hypoglycemic? My heart was beating fast and punding in my head. I couldn't sleep at night I was always tired and shaky. I also had a stress test and wore a halter monitor. My doc could find nothing wrong with me until I took the Glucose Test last week. I am set to see a dietician next week and hopefully will start to feel better. Good Luck!
    Anonymous 42789 Replies
    • November 6, 2006
    • 03:26 PM
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  • Hi. I feel your frustration. I have been (sometimes continue to be) there!Have your doctors ruled out Lupus and other connective tissue and rheumatological diseases? What about Guillain-Barre? Have you been checked for FMS ("fibromyalgia?") It took 30 years for me to get that diagnosis. Since I formerly worked in the medical field, have a degree in medical technology and nutrition, I have spent the 2nd part of my life looking for a "cure" - - or at least things to control symptoms. I am now 61 and have tried a lot of things! Remember this: NEVER GIVE UP. If one thing does not work, give it a fair trial, then try another. This goes for doctor's, meds, supplements, exercise, alternative therapies. When I'm having an especially bad day, I tell myself "This will pass and I will feel better." I may cry awhile or stay in bed a day or two, but then I get up and keep going. Some suggestions:l. Control pain - If NSAIDS or tylenol works for you, use it. I have used darvoset-N and neurontin at very low doses. (Be careful of some pain drugs because they can drop your blood pressure). Try a newer antidepressant such as "Cymbalta" which helps depression, sleep, pain, and anxiety, with very few side effects. Try a benzodiazepam drug such as xanax or klonopin at bedtime to help your sleep and muscle relaxation. It also helps the numbness and tingling feeling which can go along with FMS. I have used one of these drugs for years, and NEVER had a problem with tolerance, although your doctor will argue that point! You deserve a trial anyway. Give powdered MSM a try. The brand to get is from the health food store "Source Naturals"....8 oz. (Don't get any other brands). It is odorless and tasteless and is mixed in a small amount of juice. Start out with 1/2 tsp. and increase to 2 tsp. As far as I know, there have been no adverse effects with this natural organic sulfur product. It helps pain, joint mobility, immune function, brain and eye function and hair and skin. I've used it daily for 4+ years. 2. Find an endocrinologist or wholistic minded doctor who will run a more complete panel of thyroid tests for you....and try Armour thyroid if there is any indication at all that you might need more thyroid. Doctor's don't like to use Armour and I have still not figured out why. (maybe drug company pressure??). It's your body and you deserve a trial. 3. Take extra vitamin C, along with a good multi vitamin/mineral (NOT "one-a-day"). Be sure that the minerals are "amino acid chelated." There are also several supplements that can give you more energy or help in other ways: co-Q10 Magnesium L-carnitine Quercetin with Bioflavinoids Dandelion Ginseng Rhodiola 4. Controlling Sinus Problems. Use a steroid nasal spray once a day. Also use a saline spray daily until sinusitis is better, then use a "Neti Pot" for nasal irrigation if you begin to get a sinus infection. Check in a good natural food store for this and how to use it. I make up my own saline solution and add a tiny pinch of Kosher salt to it to make it "hypertonic"...this helps to dry up the congestion in the sinuses. 5. Irritable Bowel Syndrome, Mitral Valve Prolapse, and Reynaud's Syndrome, not to mention dizziness, balance problems, and frequent vision changes also go along with FMS. Fiber supplements (avoid psyllium if it bothers you), help regulate you. I found that the L-carnitine and coQ10 mentioned above help the heart pounding and irregular heartbeats, etc. The Reynaud's - blue, cold fingers - drink something hot or just hold something hot! The Quercetin above helps this, and some BP meds help it. 6. I have found that one of my biggest problems is medication. I am very sensitive to drugs, and the older I get, the worse it is. I drink plenty of water and also take 6 to 9 capsules of "Dandelion" every day which help to clean out the liver and intestines. If you are taking heart or blood pressure pills, the hair thinning could be due to them. I hope something I have suggested helps you, even if your diagnosis is different. Take what you can use! PS.....I try to get out every day - to shop, walk, or watch people at the mall - it really helps.
    Anonymous 42789 Replies
    • November 13, 2006
    • 07:04 PM
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  • Consult an Upper Cervial Chiropractor. The top bone that your brain stem goes through and that lolds your head problably has a subluxation. Study it on the internet and see if it sounds like what you have. Look up brain stem subluxation. I am getting great results from a chiropractor named Steven Conicello in Greenville SC. I have been diagnosed with Fibromyalgia and Myofacial pain. I feel hopefull for the fisrst time in 6 years. Lisa
    Anonymous 42789 Replies
    • November 18, 2006
    • 08:38 PM
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  • If you also get post excertional fatigue.. your symptoms could be due to Chronic fatigue Immunity Disfunction syndrome (CFIDS also known as CFS). "very fatigued. I became heat sensitive, had excessive sweating, urine feels hot when I do anything physical, numbness and tingling in hands and feet, postural hypertension, wildly fluctuation of blood pressure, palpatations, fast heart rate, left sided headaches. subjective weakness along with weakness in left leg and arm." All that stuff can occur in CFIDS people... when one tries to do anything physical it can often bring in more symptoms. Postural hypertension, wild fluctuations in BP, heat sensitivity feature strongly in CFIDS. Weakness or numbness of body parts are very common too. I have CFIDS and often get extreme weakness and numbness in my right hand cause of it, but that can happen in any body part. (I had a MRI to check for MS..but they found I dont have MS.. so hence have said its just another symptom of the CFIDS i have). Fast heart rate can be common in CFS too. " I still feel weak and dizzy, especially when I stand up. I don't feel depressed..just weak." That is such a common statement one hears from people with CFIDS ".sometimes my toes look blue " Raynards syndrome in toes?? (circulation problems commonly occur in CFIDS too) Here's all the symptoms ive had with having CFIDS for 10 yrs (I had FM/FMS..fibromyalgia for a time too). Not everyone gets all these symptoms, one could just have your symptoms but one thing which everyone who has CFIDS gets is postexcertional fatigue. 1/ post excertional fatigue (both physical and mental)2/ fatigue 3/ exhaustion (physical and mental)4/ feeling weak5/ feeling feverish6/ feeling fluish7/ feeling like "death warmed up" (like feeling pale and like one is on deaths door)8/ feeling faint and dizzy9/ apathy10/ feeling overwhelmed at times (this happens when I get overload..eg too much stimuli happening.. it can throw me into body shakes)11/ feeling depressed (that was the first year of my illness)12/ panic attacks (new symptom this year)13/ rapid mood swings (new symptom this year)14/ feeling suicidal (first year of illness.. and also this year)15/ feeling cold (I sometimes need to wear a jacket or even gloves on warm days)16/ feeling hot (I sometimes heat up doing the slightest thing..eg vaccuming one floor)17/ Im intollerant to both heat and cold eg ive collapsed twice at different jobs when it was hot so my bosses wouldntallow me to work with them in the heat anymore and just freeze up and go intoshivering very easy on a cold day18/ intollence to light, it hurt my eyes (only back when I had the FM)19/ intollerance to sound (hurts my head..and fast music can be too much in the speeds of its beats for my head and can send me into shaking)20/ body sensation numbness ..eg At the moment Ive got a numb right hand... I couldnt feel my friends hand holding it well or him stroking it well today. Its a new symptom.21/ feeling stiff (only in the past when I had the FM)22/ muscle pain23/ bone pain (only in the past when I had the FM)24/ all over body pain (hurt laying on the bed cause of touching it.. with the FM)25/ strange body sensations (like ants all crawling over me.. and also of like spiders biting me..so much I'd yelp with it at times)26/ pain inside my body which would change places and like pressure or pushing (only with the FM)27/ joint pain (back with the FM.but the muscle and bone pain was more of an issue)28/ eye pain like behind my eyes (only with the FM)29/ headaches (when ive over excerted myself)30/ sore throat31/ swelling of my toes of both feet and pain there (I couldnt wear shoes for two weeks..doctor said I had chillbanes and gave me medication)32/ swelling right hand (a recent problem.. no pain involved with it)33/ weakness of my right hand (a new problem ..specific to that hand, affecting fine motor skills eg its hard to dip a biscuit in a cup at times. I cant hold my newborn neice on that side for even 5 mins at the moment)34/ major spasming of right hand (a new problem.. spasms at rest)35/ loosing control of right hand (a new problem.. it will suddenly let go of things and attimes I cant write with it anymore cause its hard to control, cant feel it well)36/ Raynards syndrome in my fingers (when cold or I get stressed they go blue or white)37/ Pins and needles feeling cause of poor circluation easily38/ swollen glands39/ blurry vision (only when I had the CFS/FM)40/ severe memory problems (short time and long term) which are worsening eg I forgot how to use a phonebox yesterday and then when i left there..i left my money there!!!. I forget friends names at times and once forgot where I worked!!!!Ive done the same thing with my car..thought I it had been stolen when my car was right in front of me, i couldnt recognise my own car.41/ blank outs/mind lapses?? (Petit Mal seizures??? - absence seizures (conscious but unaware of my actions.)42/ confusion eg yesterday..freaked out thinking i'd lost my purse so was looking for it, it was in my hand the whole time43/ difficulty concentrating44/ difficulty working out things which require mental effort eg adding up can be hard,cant work out things in my head easily45/ difficulty understanding language..46/ difficulty talking ..I often say wrong words in sentences and at times find myself able to speak properly.. eg forget how sentences start..or jumble the whole sentence up47/ slurred speach48/ rashes (I have a rash of some kind on my right arm at the moment) (a doctor said it could be a viral kind of rash..but he didnt seem to know)49/ shortness of breath (new symptom.. its like i cant get enough air, it can happen on excertion)50/ muscle weakness (my legs can buckle and give way if I stand in the one spot toolong. Standing in phone box talking to someone can be hard)51/ muscle twitches52/ poor appetite (i need to temp myself with foods to make myself eat)53/ food intollences (a new symptom.. causing stomach pain, sore throat, tiredness etc) Im now worried about what foods are going to cause me to react and its putting me off of eatting at times.54/ insomina (okay at the moment, had problems with that last at the start of this year and in the past)55/ balance problems (I loose balance easily and can just suddenly fall over)56/ I cry easily at things57/ easy bruising??? (I always seem to have bruises)58/ easy marking on touch (a friend of mine noticed this with me a couple of weeks back.. i was running my finger along my skin and it left a big red mark. My skindont seem to be doing that right now thou).59/ thirst (ive stopped doing that several mths back when I got treated by a homoeopath... i was drinking about 3 Litres on a normal day more when hot).60/ sweating .. (bad night ones when I also had the FM) .. I still sometimes break out in sweat easily eg while vaccumming a room. 61/ body shaking/trembling (on over excertion62/ tic (In the past couple of mths Ive developed a head tic ..major when it happens..body overload can send me into it.. once a breeze blowing on my face sentme into it. Its constant till the stimuli is removed)63/ abnormal taste sensation eg a salad sandwich may taste like pineapple when there is no pineapple on it64/ abnormal smell sensations eg body odour may smell like strawberries65/ hyper-reflexia (autonomic dysreflexia) eg body over reacts to stimuli ..this can cause meabnormal reflexes in my legs to even almost throwing a seizure on being touched, or having light shine in my eyes (when I get this I can get the other symptoms with this too high blood pressure ..eg 150/95 or more, sweating, anxiety, muscle spasms etc). If you go to www.immunesupport.com chatroom (the FM/CFS room) and chat to those there, you should find others with extremely similar symptoms....
    taniaaust1 2267 Replies
    • November 21, 2006
    • 03:55 AM
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  • "I have been to every doctor known to man. They have done 3 lumbar punctures and have found 12 oligoclonal bands in my spinal fluid not in my serum which is pretty specific to ms. " I did some searching for you online, to try to find out if there is any relationship between CFS (which is also known as ME) and abnormal results with orligoclnal bands and found the following info which fits with your results. "Evidence of abnormalities in MEDespite beliefs and assertions to the contrary, in ME there is evidence of inflammation of the central nervous system (CNS); that is what helps to differentiate ME from other forms of CFS. There are many references in the medical literature to inflammation of the CNS in ME and in ICD-CFS (37),(38),(39),(40),(41),(42) but such CNS inflammation is not found in all variants of CFS. It is incorrect to deny the existence of CNS inflammation in ME / ICD-CFS. In some cases of ME, as in multiple sclerosis, there is evidence of oligoclonal bands in the cerebrospinal fluid. (43),(44)" * 43 and 44 were "43) Neuromuscular Abnormalities in Patients with Chronic Fatigue Syndrome. Carolyn L. Warner, Reid R. Heffner, D Cookfair. In.. The Clinical & Scientific Basis of ME / CFS. ed.. B.M. Hyde J Goldstein, P Levine. pub. The Nightingale Research Foundation, Ottawa 1992(44) The Differential Diagnosis between Multiple Sclerosis and Chronic Fatigue Postviral Syndrome. Charles M. Poser. ibid"
    taniaaust1 2267 Replies
    • November 21, 2006
    • 04:52 AM
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  • Thank you all for your posts! My hip replacement was scratched because they cultured my sinus and found a pseudomonas aeruginosa infection in my sinus. I have been on antibiotics two at a time and the doc just called today and said that the latest culture showed no PA. The endocrinologist tested me for a pheochromacytoma and the test was neg which is pretty conclusive that I don't have one. I am still feeling the same things. Today my pcp told me (after I told her about having postural headaches and the fact that another doc has notices a very high resting heart rate and fluctuating BP that I need to have a tilt table test. When I stand up I get this headache for just a few seconds and sometimes feel like I am going to pass out. Two years ago I went to a cardiologist who had me wear a holter monator and told me he thought I had a nuesience heart rate prob. I have had this presyncope for several years. I have a very stong family history of heart probs with both my sister and grandfather having sudden death experiences. Both of my cousins have had bypass operations and vascular probs run in the family. Last time I went to the Endocrine doc when she examined me the tips of my fingers were "dusky". I have noticed also at night after resting in a chair all evening that my toenails are blue. I am on Cortef for a hypopituitary but the doc thinks this was misdiagnosed due to spinal injecitons around the time they did the acth test. She has tapered me down to a lower dose and I see her next week. Can you tell me what ME is? I understand the CFS as I have had fibro for 20+ years. I keep thinking that one of these days I will finally put this all together! Isn't that what doctors are for??????? Thanks for the input and caring! Hope you are all doing well!Cynde
    flowerfloosey 23 Replies
    • November 28, 2006
    • 01:25 AM
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  • ps..could this weakness that I feel after eating and having a BM be a heart thing?? The thought has occured to me.
    flowerfloosey 23 Replies
    • November 28, 2006
    • 01:27 AM
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  • M.E. stands for Myalgic Encephalomyelitis or Myalgic Encephalopathy. Its just another name for CFS (CFS is called M.E. in parts of the world other than Amercia). Some thou will say that thou M.E. is a type of CFS (there are subtypes of CFS), it has its own like catagory where neurological symptoms are more prominent than in many other cases of M.E. eg "subjective weakness along with weakness in left leg and arm" would be more of a neurological kind of symptom, a recognised kind of M.E. symptom. "I will finally put this all together! Isn't that what doctors are for???????" Doctors at medical school.. are not taught at all about CFS/M.E. so no you cant expect them to put it all together having not been taught anything bout it. Many doctors will not put that together if it is your problem. In studies done, the average time before correct diagnoses was made for this condition is 7 yrs!!! Do you realise that over 35% (maybe even up to 80%, it varies in what one reads) of CFS people have Fibromyalgia!!!!.. these illnesses go together. I went to a lecture held by a specialist and a GP.. both who were specialises in FM and CFS and during this lecture it was said by one of these specialists that he wont separate these illnesses no more.. as so many of his Fibro patients had gone on to develop CFS. 4% of CFS people have hair loss as a symptom. weakness after eatting is often a food intollerance problem going on (something else common in ones with CFS). To find out about food intollerences (some call it toxic food syndrome) Immunoglobulin G (IgG) test, a blood serum test may be done.. to test for foods you are senstive too. Im about to have this kind of testing done on me.. as i know i do have food sensitivities going on too (thou its taken me years to realise this). i truely hope you work out what is wrong with you.
    taniaaust1 2267 Replies
    • November 28, 2006
    • 05:20 AM
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  • Thanks Tania,I would certainly like to follow your case and read some more about it. I read the long info on the link that you posted. I found it quite interesting. How do you find a doctor that specilizes in this disorder?? I think I would like to be evaluated by one. Is there still the stigma of it being a phycho prob??Thanks for posting and answering my questions!!Cynde
    flowerfloosey 23 Replies
    • November 28, 2006
    • 05:42 AM
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  • Thanks Tania,I would certainly like to follow your case and read some more about it. I read the long info on the link that you posted. I found it quite interesting. How do you find a doctor that specilizes in this disorder?? I think I would like to be evaluated by one. Is there still the stigma of it being a phycho prob??Thanks for posting and answering my questions!!Cynde It all depends on the doctor one sees, some (esp old school ones) still do believe that CFS is in ones head thou now, finally, the CDC is saying its a very real, not a psychological illness. Things will get better once they do start teaching about it in the medical schools. Things like depression are common in CFS but that usually comes on AFTER the CFS first comes on.. due to the severity of the illness and our struggles to deal with it etc Any doctor thou who specialists in CFS knows it isnt our heads as there are MANY physical findings to be found and some simple tests also which can be done eg the romberg test (The last time some neurologists put me throu that CFS test, I went instant collapse. I collapsed so fast that they missed catching me so I hit the hospital floor, both myself and they were quite shocked at my instant collapse, the moment I shut my eyes) . Some tests and things doctors can look for for vertification of CFS are at http://www.immunesupport.com/library/showarticle.cfm?id=7246&T=CFIDS_FM To find a GP or specialist who specialises in CFS, I suggest for you to either email or phone or visit your local CFS groups or CFS associations in your state and ask them to recommend a doctor close to you who's had some experience with CFS. best luck...
    taniaaust1 2267 Replies
    • November 30, 2006
    • 04:33 AM
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  • Thanks Tonia. I will do that. I have been experiencing vaso vagle responses. I also have a positive Romberg test!! I live in a small town but will look into the places you suggested. Thank you again for all the info!Cynde
    flowerfloosey 23 Replies
    • November 30, 2006
    • 05:18 AM
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  • Consult an Upper Cervial Chiropractor. The top bone that your brain stem goes through and that lolds your head problably has a subluxation. Study it on the internet and see if it sounds like what you have. Look up brain stem subluxation. I am getting great results from a chiropractor named Steven Conicello in Greenville SC. I have been diagnosed with Fibromyalgia and Myofacial pain. I feel hopefull for the fisrst time in 6 years. Lisa Thank you, Lisa, for this information! I have never heard of this before, but it certainly explains Fibromyalgia, CFS, etc. I will be exploring this with a chiropractor trained in brain stem specific treatment.Bess
    Anonymous 42789 Replies
    • December 2, 2006
    • 04:56 PM
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  • Food intolerences effect about 1 in 10 people and it takes on average 9-12 years to diagnose (when diagnosed at all). They can develop at any point in life, but usually following a stomach virus or a stressful event or period of extended stress.It can possibly lead to a diagnosis of, or symptoms similar to MS, CFS, Fibro, although it isn't quite the same thing. It can basically affect every single system in the body, and the doctors rarely look for it because they can find enough specific irregularities to keep themselves busy writing prescriptions to treat the symptoms.For wheat intolerence alone, the statistics suggest about 2.5 million gluten intolerent Americans are either misdiagnosed, undiagnosed, or self-diagnosed. And thats going by the strict definitions. The number could jump another 10 million if you included everyone who creates anti-gliadin antibodies, an immune system product designed to fight an opioid peptide created from partially digested gluten protein. Milk, corn, and soy can also create opium-like peptides if they aren't fully digested. The real problem, however, is the way the body attacks these peptides in certain people and the way the immune system damages itself by creating such a massive response to foods that are constantly being consumed.Your odds or being undiagnosed with a food intolerence are actually 40 times higher than being diagnosed or being treated for the resulting symptoms instead of the cause.
    Azaral 152 Replies
    • December 2, 2006
    • 05:30 PM
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  • Lisas suggestion about seeing a good chiropractor is extremely good advice too. I see one for my CFS and things from my hormone problems to my dizziness have all been improved some by chiropractic treatments...
    taniaaust1 2267 Replies
    • December 4, 2006
    • 01:42 AM
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  • Flowrflossy, you are living my life!!!!! Well I have all the same sumptoms! I just found out today my ACTH and cortisol are slightly low, can that cause all the pain and crazy stuff going on in my body?! I wish I knew!
    tam4givin 19 Replies
    • December 21, 2006
    • 05:00 AM
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  • you have Multiple Sclerosis and allergies. Quit looking for something else. You need to see a MS specialist and start treatment.
    Anonymous 42789 Replies Flag this Response
  • you have Multiple Sclerosis and allergies. Quit looking for something else. You need to see a MS specialist and start treatment. If it was only that easy!!!ok here's some more clues to my puzzle:B 12 is low (maybe from stomach problem, pancreas, could that be what is causing pain on my right side?Insulin is very high with glucose being normal, the only thing I can find on this is a insulin producing tumor often in the pancreas (which could cause Cushins which could cause the weight gain)My pain in neck and head and tremor was finally diagnosed as DystoniaNow, none of that helps to know what is going on with my forgetfulness and not being able to get words out even tho I know the word. Do I have Wilsons?Cystic fibroses? Yes you can have it and not know untill you are an adult! One of my children had tests every year for years they always came back to high to rule out not high enough to diagnose. All of my children now in thier mid to late 20s are getting all these crazy illnesses I have! How do I convince a doctor to test? How do I convince a doctor to do much of anything when I have Medicare! The diffarence in care since I got Medicare is the pits! How do people go threw all this with out faith in God!
    tam4givin 19 Replies Flag this Response
  • Flowrflossy, you are living my life!!!!! Well I have all the same sumptoms! I just found out today my ACTH and cortisol are slightly low, can that cause all the pain and crazy stuff going on in my body?! I wish I knew! Low cortisol can be a CFS/ME thing too, you probably have it the same as im entirely convinced flowflossy has it esp since it goes hand and hand with FM and flossy's symptoms are typical ME ones. tam4givin heck out http://phoenix-cfs.org/Hypocortisolism%20in%20CFS.htm which talks about the common low cortisol problem in CFS. ......................... Flowflossy.. my CFS/ME since i posted to you has increased in symptoms.. im getting 80 different symptoms and problems with it now :( . Im just glad my problem was diagnosed a long long time ago now, and that all my symptoms are related to it. If I wasnt diagnosed 10 yrs ago and still seeing CFS specialists so i know what is going on, it would be so so scary. A few weeks ago I went completely unconscious with it. I'd been standing up, talking to a friend and that is the last thing I remember, I lost consciousness without any real warning (only slightly dizzy). I apparently I was unconscious for 3-5 mins before I started slowly coming around. So now Ive got heart specialists Ive been seeing for tests, added to the rest of the specialists I have to see due to the CFS. (no heart problems were found thou on the echo and other heart tests I had)
    taniaaust1 2267 Replies Flag this Response
  • Thanks Tonia. I will do that. I have been experiencing vaso vagle responses. I also have a positive Romberg test!! I live in a small town but will look into the places you suggested. Thank you again for all the info!Cynde im really wondering how you got on with things and whether you ended up finding a doctor to go to who specialises in CFS/ME to see. If you are still looking for answers, there is a good doctor list in all countries and places, for CFS/ME and FM at http://www.co-cure.org/Good-Doc.htm i'd love to hear how things are going for you...
    taniaaust1 2267 Replies Flag this Response
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