Discussions By Condition: I cannot get a diagnosis.

Can someone help my mom PLEASE!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: mindersmomof2
  • June 1, 2008
  • 04:35 AM

Hi, I have along story to tell, I hope someone can help! My mom is 53 years old. 10 years ago she was working cleaning hotel rooms, and she suddenly got extremely weak and dizzy. This went on for a few weeks, kept getting worse. Than she had vertigo were everything was spinning around her. She vomited and had to crawl everywhere. She also had ringing in the ears. This went on for weeks nonstop. She finally went to an intern Dr. and he set up a bunch of balance tests. They did it all and she was so sick during it. She could not close her eyes without falling. They said it is just vertigo, maybe minears disease. They set up physical therapy for her, she got better before she went. She went a couple times that's all they had scheduled. She had to quit her job. In the meantime she started to walk funny. She drug her right leg a little. She also tripped alot over nothing. She had tremors bad. We also noticed she cripples up her hands when she walks. My aunt said she walks like a mummy, very stiff and deformed. So the Doc set her up with a neurologist. He did brain MRI's and alot of blood tests. He said he thinks she has Parkinson's disease. He put her on anti-shaking med which is used in Parkinson's patients. This made the shakes stop. The MRI's came back good. He said no to Parkinson's. The blood work came back good too. So he sent her to a psychiatrist. They labeled her as mild depression. So she got it in her head that no one believes her, she is mental that's all that is wrong, we knew better. He put her on zoloft. She was a little depressed because she did not feel good!!! The next symptom (This was all within about 1 year) was extreme tiredness all of a sudden. She tells me she is laying on the couch and suddenly feels like she is dying, peacefully. She is so weak she can not hardly move! She goes to the grocery store and all of a sudden feels like she can not take another step. The next symptoms were memory trouble. She can not have good conversations anymore. Some days she is on top of things and is great in talking. But some days I have to talk really slow and repeat myself, I don't think she understands alot of what I am telling her. She says "Wait, what did you just say, all I heard was mumble?" She went to her neurologist a year later had another brain MRI, they found a pituitary tumor in her brain. That scared us, but the docs didn't seem to think it was important information. They said to come back in a few months and we will See if it has grown. She went back after a few months and it had not grown. She got sent to a endocrinologist and he said the tumor is just something to watch. She has had an enlarged thyroid for years too, which fluctuates between being in control by meds and sometimes not. Her numbers are off alot of the times so they re dose her medicine. They sent her to another physc. eval and they did a very good test on her memory and stuff. It came back saying she defiantly has something wrong but they don't know what it is. Signs of some sort of disease. She has dementia (like Alzheimer's disease) they wanted my mom to go to mayo clinic in Minn. She went there, what a joke! They sent her home that day saying they don't know what is wrong. They want her to go back to them to redo all tests that have been done on her so they have all results. Today, she hurts all over all the time. She has had back surgery. She had 4 bad disks on the top and still has 4 on the bottom. She had a complete hysterectomy due to bad heavy periods and blood clots. She hurts all over her body daily. She never feels good. She wakes up and has a puffy face and feels weird in the head. She has not had vertigo again since last time. She used to come over everyday, she comes over about once every 2-3 weeks. She has days were she sleeps all day. She takes sleeping pills at night otherwise she would be up for days. She walks deformed, crippled. Her arms are very red, some days worse than others, and her skin feels like red ants are all over her bitting her. She will not go to any new docs for me or my dad because she thinks she will never find what is wrong. She has been tested for lupus, Aids, autoimmune diseases, mono, Lyme's disease, Parkinson's, MS and many more. She has had EEGs, EKGs, MRIs, cat scans, lots of blood work, cortisone levels. Alot of her blood tests come back normal high. Some are off but not enough to diagnose. WE are helpless, don't know what to do. I really hope someone out there has similar symptoms. I wonder if it is chronic fatigue but that is a diagnosis when docs don't know what else it could be! My Dad told me now more doctors, lets enjoy mom while we have her and he started crying! Sorry this is long but please help my mom, someone! Oh, we live in SD not to many doctor options.

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8 Replies:

  • Sorry your Mom is not feeling well, but I think there is an answer staring us in the face...she seems to have classic symptoms of THRYOID problem probably with PITUITARY involvement But the bigger problem is that she needs a good doctor ....the pituitary is the master gland and controls the endocrine system including ovarian hormones (menopause, post-menopause), adrenal hormones, thryoid hormones to name a few and problems there, yes it can cause all those problems and symptoms that you mentioned and more! Especially since she is feeling so poorly, I would say it is time to get another opinion about "wait and see" idea on the pituitary tumor and thryoid....I would say the "wait and see" is OVER! SHE NEEDS TO FIND A BETTER ENDOCRINOLOGIST and preferably one that specializes in PITUITARY TUMORS...look this up and educate yourself on this type of tumor...you will find your mother's symptoms.....they can really cause problems and your best bet is pituitary specialist ....I bet my bottom dollar she needs serious intervention for the thryoid and pituitary! Does she have Hashimotos? Graves Disease? YOU CAN HELP HER by educating yourself on thryoid problems and pituitary problems...she does not feel well, so you can get on the internet and research it for her. If her numbers are fluctuating it may be the problem is the pituitary....What major teaching University Hospital are you nearest to that has a good ENDOCRINOLOGY unit? THERE ARE ANSWERS!!! Look, don't give up on your Mom...she CAN be helped though you may have to get in the car and travel to a good doctor ...Try Mary Shomon's thryoid site at About.com.....great forum and help there....try the Mayo Clinic site and research, research, research.......do not give up on her, she CAN BE FEELING WELL with the right doctor and right help....I know this as I had a thryoid problem so I am a bit familiar with all the troubles the endocrine systems can cause if it get thrown off...DON't GIVE UP...no REASON for CRYING...just make a plan and help her...you and your Dad can! Joan
    Joan5555 316 Replies Flag this Response
  • Hi, posting again. Here is what I would do: 1. Give your Mom a hug and tell you you and your Dad will not give up and will help the best you can. 2. research pituitary tumors - post on forums with Mom's symtpms 3. research thryoid problems - Hashimotos (?) - post Mom's symptoms AND LAB results on thryoid tests on Mary Shomon's thryoid site at About.com 4. Find a doctor who specializes in Thyroid/pituitary problems and is willing to work with your mom to help her feel better \\this can be the bottleneck, but calling doctors or interviewing doctors...in the end will be well worth it...again Mary site I think may even have doc recommendations or you can ask for one on the forum. hope this helps! Joan
    Joan5555 316 Replies Flag this Response
  • Thank you so so so so much Joan, the help is appreciated! I will go on her site and tell my mom's story. So they have doctors that reply on that site? That would be great for a recommendation! I asked my mom the other day about traveling and she said that would be so much money, but I think it is worth it. If I made the appointment, she would go I've done it before, again thanks I will keep you posted!
    mindersmomof2 2 Replies Flag this Response
  • YOUR MOM HAVE LYME DISEASE!!! LATE STAGE LYME DISEASE CAUSE UNDIAGNOSED!!Yes, she had a test, but the test she had is not good. It's a long story!!Actions are done in all the world for this!! Look at the actions of the attorney general of Connecticut about it: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284Things will change soon, but now, she must be treated!! She must go see a LLMD( lyme literate medical doctor) Ok, go on lymenet, Blaze gave the link, and ask for help to find a doctor. He will do a clinical diagnosis with her symptoms for sure, will pass the good tests, and will give her antibiotics that she need. Se will have to be trated on a long term period, cause shes chronic lyme and very sick, She probably have co infections...Listen im 24 , Canada, and passed trought all your mom does,and now, i have a lyme disease diagnosis, with co infections diagnosis, im treated, and will go out of this. Please, listen to me ok, your mom doesn't have chronic fatigue, there's causes for all this and lyme is.Please look at my links ok:Symptoms: www.canlyme.comMovie coming about it: http://www.openeyepictures.com/underourskin/uos_background.htmlclick view trailerLook what Lyme can do: Do you know the author Amy tan??she was first negative too: http://www.amytan.net/LymeDisease.aspxPlease go on lymenet to ask for a doctor, your mom need help as fast as possible ok!!!She is very sick with lyme!!Please, look at what i send ok, she will be ok once but listen to my advice.Hope you will...Fannie
    Fannou 111 Replies Flag this Response
  • Hi, I have along story to tell, I hope someone can help! My mom is 53 years old. 10 years ago she was working cleaning hotel rooms, and she suddenly got extremely weak and dizzy. This went on for a few weeks, kept getting worse. Than she had vertigo were everything was spinning around her. She vomited and had to crawl everywhere. She also had ringing in the ears. This went on for weeks nonstop. She finally went to an intern Dr. and he set up a bunch of balance tests. They did it all and she was so sick during it. She could not close her eyes without falling. They said it is just vertigo, maybe minears disease. They set up physical therapy for her, she got better before she went. She went a couple times that's all they had scheduled. She had to quit her job. In the meantime she started to walk funny. She drug her right leg a little. She also tripped alot over nothing. She had tremors bad. We also noticed she cripples up her hands when she walks. My aunt said she walks like a mummy, very stiff and deformed. So the Doc set her up with a neurologist. He did brain MRI's and alot of blood tests. He said he thinks she has Parkinson's disease. He put her on anti-shaking med which is used in Parkinson's patients. This made the shakes stop. The MRI's came back good. He said no to Parkinson's. The blood work came back good too. So he sent her to a psychiatrist. They labeled her as mild depression. So she got it in her head that no one believes her, she is mental that's all that is wrong, we knew better. He put her on zoloft. She was a little depressed because she did not feel good!!! The next symptom (This was all within about 1 year) was extreme tiredness all of a sudden. She tells me she is laying on the couch and suddenly feels like she is dying, peacefully. She is so weak she can not hardly move! She goes to the grocery store and all of a sudden feels like she can not take another step. The next symptoms were memory trouble. She can not have good conversations anymore. Some days she is on top of things and is great in talking. But some days I have to talk really slow and repeat myself, I don't think she understands alot of what I am telling her. She says "Wait, what did you just say, all I heard was mumble?" She went to her neurologist a year later had another brain MRI, they found a pituitary tumor in her brain. That scared us, but the docs didn't seem to think it was important information. They said to come back in a few months and we will See if it has grown. She went back after a few months and it had not grown. She got sent to a endocrinologist and he said the tumor is just something to watch. She has had an enlarged thyroid for years too, which fluctuates between being in control by meds and sometimes not. Her numbers are off alot of the times so they re dose her medicine. They sent her to another physc. eval and they did a very good test on her memory and stuff. It came back saying she defiantly has something wrong but they don't know what it is. Signs of some sort of disease. She has dementia (like Alzheimer's disease) they wanted my mom to go to mayo clinic in Minn. She went there, what a joke! They sent her home that day saying they don't know what is wrong. They want her to go back to them to redo all tests that have been done on her so they have all results. Today, she hurts all over all the time. She has had back surgery. She had 4 bad disks on the top and still has 4 on the bottom. She had a complete hysterectomy due to bad heavy periods and blood clots. She hurts all over her body daily. She never feels good. She wakes up and has a puffy face and feels weird in the head. She has not had vertigo again since last time. She used to come over everyday, she comes over about once every 2-3 weeks. She has days were she sleeps all day. She takes sleeping pills at night otherwise she would be up for days. She walks deformed, crippled. Her arms are very red, some days worse than others, and her skin feels like red ants are all over her bitting her. She will not go to any new docs for me or my dad because she thinks she will never find what is wrong. She has been tested for lupus, Aids, autoimmune diseases, mono, Lyme's disease, Parkinson's, MS and many more. She has had EEGs, EKGs, MRIs, cat scans, lots of blood work, cortisone levels. Alot of her blood tests come back normal high. Some are off but not enough to diagnose. WE are helpless, don't know what to do. I really hope someone out there has similar symptoms. I wonder if it is chronic fatigue but that is a diagnosis when docs don't know what else it could be! My Dad told me now more doctors, lets enjoy mom while we have her and he started crying! Sorry this is long but please help my mom, someone! Oh, we live in SD not to many doctor options. Hi, I am so sorry ur mom is so unwell & that u & ur family or so worried. Please understand that "No One" can diagnose any illness on here, all one can do is suggest possibility's and point u to areas that u should research as Joan5555 has done......even Blaze choose her words better this time, the key word was "Investigate" No doctor worth their salt would diagnose anything without tests to confirm the diagnosis....... anyone with any sense "would not" do this either ! If ur worried about lymes have the appropriate test redone. I truely hope u find the answers & things improve for u all soon. Kind regards :)
    Tootsie 628 Replies Flag this Response
  • Your poor mother.. i wish i could give you both a hug. I too wonder if the pituatory and the thyroid still may be the issue. I think she should try to see a doctor who has a special interest in pituatory tumors etc. Sometimes things can be dismissed which ARE important and causing someones symptoms.................. I wonder if it is chronic fatigue but that is a diagnosis when docs don't know what else it could be! i assume you were refering to "chronic fatigue syndrome", nods that is true.. but there is a certain criteria which has been put down before a doctor can give one that diagnoses. This helps prevent ones who have other illnesses from being thrown into this catagory!. CFS thou a test isnt currently available.. is a illness.. and one day.. maybe soon, there will be test available for it. (They are working on developing one right now.. based on the new scienctific info that in CFS people, 88 abnormal genes are commonly found. They can tell which subgroup of CFS one is in, via what abnormal genes you have!) (The fact still stands thou that a quarter of ones diagnosed with CFS still turn out to have something else but then this is often case cause a doctor who isnt familiar with CFS did the diagnoses!). I myself have CFS and most of the associated issues of this illness and have had (and do get)... same symptoms as your mother (but more as well). When i was hopsitalised due to this.. I was mistaken a couple of times by different nurses (one was the head nurse!).. as being a parkinson's disease patient due to my symptoms. I LOOKED like a parkinson's disease patient. In my own experience of having CFS/ME.. i describe it as like having Alzheimer's, MS, allergies, Parkinson's, epilespy all at once!!! It's horrific. My memory loss at times is so bad, that i've had times i dont even recognise family members, with the parkinsons like symptoms.. I tremor and drag one of my legs (esp if trying to get up any slope, even a small one).... (they tell you that CFS causes short term memory loss but any severe CFS person will tell you it isnt just short term loss.. but may be long term things too, things can just suddenly drop out of ones memory.. Ive had occassions where I forgot what a toaster was!) nods and yeah.. when a severe CFS person is spoken too.. it can be like the other is speaking to one in a foreign language. You are doing the right thing by talking to her very very slow and repeating. It's like the mind takes ages to absorb anything which is said.. and the memory can just drop out eg forget the first part of the sentance that was said.. .by the time one reaches the end of the sentence (thou my memory used to drop out the middle of sentences). Try to phrase things to her as you would a toddler keeping them as simple as possible, (when im real bad i ask people to do that). She could not close her eyes without falling. There is a test called the Romberg's test http://en.wikipedia.org/wiki/Romberg%27s_test in which a neurologist will get one to shut ones eyes and try to remain standing. This test is used to confirm neuro issues.. and is a test which is commonly used in CFS as most CFS people cant remain standing with eyes shut! (I dont get vertigo thou i do often at times suffer from dizziness sometimes severe.. even when not dizzy thou.. i cant remain standing with my eyes shut). Her arms are very red, some days worse than others, and her skin feels like red ants are all over her bitting her. That can be a reaction from medication, a psychological problem..Delusional Parasitosis, or a little known about problem (which is still fighting to be medically recognised) called Morgellon's. Ive read that there is a link between Morgellon's and CFS (many Morgellon's patients have CFS). (ive had Morgellon's too, i used to yelp at times due to the pain of what felt like being bitten). Morgellons is recognised as a physical problem..eg maybe a fungus, parasite or something else in body causing the symptoms........... http://www.morgellons.org/cdc.htm August 1, 2007 August 1, 2007 CDC issued the following statement Regarding Morgellons Disease and their plans for investigation:"Morgellons is an unexplained and debilitating condition that has emerged as a public health concern. Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries from the public, health care providers, public health officials, Congress, and the media regarding this condition. Persons who suffer from this condition report a range of coetaneous symptoms including crawling, biting and stinging sensations; granules, threads or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores) and some sufferers also report systemic manifestations such as fatigue, mental confusion, short term memory loss, joint pain, and changes in vision. Moreover, some who suffer from this condition appear to have substantial morbidity and social dysfunction, which can include decreased work productivity or job loss, total disability, familial estrangement, divorce, loss of child custody, home abandonment, and suicidal ideation. As of February 2007, approximately 10,000 families had registered with the Morgellon’s Research Foundation (MRF) and felt they or a family member met criteria for Morgellons as defined by the MRF. Of the U.S. families in the MRF registry, 24% reside in California with geographic clustering in the San Francisco metropolitan area. The etiology of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors. An epidemiologic investigation is needed to better characterize the clinical and epidemiologic features of this condition; to generate hypotheses about factors that may cause or contribute to sufferers’ symptoms; and to estimate the prevalence of the condition in the population; and to provide information to guide public health recommendations. A contractor is needed who can provide timely services to assist the CDC in the investigation of this emerging public health problem." .................. It's hard to say if you mother has CFS/ME or not.. but that may be the case. I suggest for you to connect with your local CFS/ME support groups and ask them for names of doctors who specialise in helping CFS/ME patients. At least then she'd have a supportive doctor!! The only reason why tests come back all clear.. is that her doctors are running the right tests. This is often the case in CFS as there ARE many abnormal findings.. but only if the right tests are run and doctors dont know what tests should be run for this. eg rombergs, morning cortisol tests pick up abnormality in a third of CFS patients etc (get her morning cortisol level tested to see if it's within normal range or low) Please get your mother a supportive medical person... she may feel like she's dying (it's common for CFS patients to feel like that being so so sick and tired).. but if it is CFS.. thou it cant be cured.. some symptoms can sometimes be helped.
    taniaaust1 2267 Replies Flag this Response
  • Thank you Tania for all of your advice, greatly appreciated! My mom did have a 24 hour cortisol test done on her urine and it came back as normal but on the high side of normal. It is very confusing because it really does sound like CFS. I looked up doctors today and the closest we can go is in Chicago IL and we live in South Dakota, Yikes! I will keep investigating, and keep trying. I talked to her about all this today and she started to cry, thanking me for believing in her strength and still being here for her! She is such a great person! Thanks, I'll keep you posted.
    mindersmomof2 2 Replies Flag this Response
  • Thank you Tania for all of your advice, greatly appreciated! My mom did have a 24 hour cortisol test done on her urine and it came back as normal but on the high side of normal. It is very confusing because it really does sound like CFS. I looked up doctors today and the closest we can go is in Chicago IL and we live in South Dakota, Yikes! I will keep investigating, and keep trying. I talked to her about all this today and she started to cry, thanking me for believing in her strength and still being here for her! She is such a great person! Thanks, I'll keep you posted. About ONE THIRD of CFS people have problem with cortisol.. so she still could have CFS, it doesnt discount it out.. but if she had had that issue..it would of been another pointer towards that possible diagnoses. http://wwcoco.com/cfids/bernesx.html (for various CFS also called CFIDS symptoms and how common that symptom is in this condition). there may be someone closer than that she can see, there often is but it's just often so hard to find out who. Maybe the following info will prove to be helpful in helping her find a closer doctor or supportive medical person. i suggest to contact some of these people and ask them if they know of anyone. 1. CFS SUPPORT GROUPS, LEADERS & CONTACTS APPLETON/FOX CITIESLeader: Geraldine (920) 731-2697 whatadaze @aol.com BELOIT-STATE LINE AREAContact: Sue (608) 676-4059CHIPPEWA FALLS Bev (715) 723-2734 MADISONContact: Barb (608) 271-7757 MENOMONEE FALLSLeader: Ed (262) 255-6195 MILWAUKEE Ric (414) 540-0172 rfuchs2@wi.rr.comCell -(414) 687-0239Milwaukee Support Group FormingIf you are interested, contact Nancy Hall at 414-559-3335 or nancyhall_atr@hotmail. com. Suggestions for a meeting place would be welcome.MONDOVI / EAU CLAIRE Arleen (715) 926-3298 aserum@triwest.netMOUNT HOREBMichelle chezmichelle@charter.netNORTHERN WISCONSIN (RICE LAKE)Barron County Support GroupFibromyalgia / CFIDS/ Chronic PainMeets every 2nd & 4th Thursday of every monthfrom 1pm to 3pm at the Rice Lake, WI. City HallCall Sally 715-924-4904 OR Ann Marie 715-637-9013PLATTEVILLE AREAContact: Lois (608) 943-8028 RACINE/KENOSHAContact: Judy (262) 886-1277 RIVER FALLSLeaders: Mimi (715) 425-8183 SHEBOYGAN Pam (920) 458-4302WISCONSIN KIDSPat Fero - (608) 837-9540 bp.fero@verizon.net The Wisconsin CFS support group is quite famous.. i think ive heard that it is the eldest? or one of the eldest in the world. "To receive a free packet of information or for any other inquiries, please send send your name and address with request to Wisconsin CFS Association: 747 Lois Drive, Sun Prairie, WI 53590. Or if you prefer to call: Phone (608) 834-1001. Or E-Mail: wicfsme@yahoo.com or bp.fero@charter.net "
    taniaaust1 2267 Replies Flag this Response
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