Discussions By Condition: I cannot get a diagnosis.

7 yrs and still no diagnosis...??

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: indigo
  • May 5, 2010
  • 00:24 AM

Hi All, This is my first time posting here... I am wondering if anyone has any suggestions as to what may be going on...

Firstly, I am a 27 yo female, mother of two (6 & 9).

About 7 years ago my health started going downhill. I started experiencing extreme fatigue that would bascially knock me off my feet, dizziness in which I would almost pass out like I lose my eyesight and vision for about 30 seconds but not pass out, and sleep disturbances where it became hard to fall asleep and wake up everyday feeling like I havent slept in a month.

I went back and forwards to doctors, neurologists, cardiologists and had bloods and tilt table test done where I was told that I may have POTS (Postural Orthostaitc Tachycardia Syndrome) which may be causing my symptoms. I was given nothing to help it.

My GP was less than useful in helping me and I basically gave up trying to get help with what was going on, so I kinda just dealt with it.

Over the years, I would get periods where my symptoms would get worse and id go down for about a week until I came right. I learnt what my limits were and what my triggers where, and tried to live a normal life around them.

In May 2009, I went downhill bad. I broke out in what I can only describe is near convulsions (or severe muscle spasms) and extreme fatigue. They doctors initially thought I had some form of movement disorder, but all my tests came back clear (Full Bloods, CT, MRI, EEG, ECG, Echocardiogram) so they said they didnt know and it would go away eventually, which after several months on risperidone it did.

Since then, I have had esispodes of weakness in my left hand, arm and leg, numbness in left hand and right side of face, which has progressed to almost my whole face now. These "episodes" last anywhere from a couple of hours, to weeks, accopained by that horrible fatigue and sleep problem among others.

At the moment, the numbness/weakness has not gone away after 2 weeks, I broke out in the muscle spasms thing again the other day after having a shower (warm shower as I am also heat intolerant), and the fatigue has be resided to the couch, which is hard with two kiddies...

I am due to see the neurologist again for another MRI.

Does anyone have any clues at to what this may be? After 7 years of being "sick", im sick of being sick!!

PLEASE HELP!

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10 Replies:

  • I don't know what your symptoms mean but I do want to encourage you to not give up and to keep on seeking answers. Like you I have known for many years something was wrong with me. Like you I couldn't seem to get any answers. Like you I sought help from discussion boards and anyone who would listen. Last week I asked my newest doctor who I have been with a year and has been so caring and so willing to try anything with me to test my vitamin D level. My issue has been ongoing horrific pain in my legs that just wouldn't go away and doesn't seem to lessen even with large doses of pain medication. She agreed to test my vitamin levels and called herself yesterday to tell me that my vitamin D level is the lowest she has ever seen. This may be the "cause" of all my pain. We have looked back through my medical records for several years and it was never tested before to our knowledge. So don't give up. I started on mega supplements yesterday and am hoping for a positive outcome. Hang in there. Be your own advocate and keep on looking for that needle in a hay stack and hopefully you will find it.Good Luck
    Anonymous 42789 Replies Flag this Response
  • Hi All, This is my first time posting here... I am wondering if anyone has any suggestions as to what may be going on... Firstly, I am a 27 yo female, mother of two (6 & 9). About 7 years ago my health started going downhill. I started experiencing extreme fatigue that would bascially knock me off my feet, dizziness in which I would almost pass out like I lose my eyesight and vision for about 30 seconds but not pass out, and sleep disturbances where it became hard to fall asleep and wake up everyday feeling like I havent slept in a month.I went back and forwards to doctors, neurologists, cardiologists and had bloods and tilt table test done where I was told that I may have POTS (Postural Orthostaitc Tachycardia Syndrome) which may be causing my symptoms. I was given nothing to help it.My GP was less than useful in helping me and I basically gave up trying to get help with what was going on, so I kinda just dealt with it.Over the years, I would get periods where my symptoms would get worse and id go down for about a week until I came right. I learnt what my limits were and what my triggers where, and tried to live a normal life around them.In May 2009, I went downhill bad. I broke out in what I can only describe is near convulsions (or severe muscle spasms) and extreme fatigue. They doctors initially thought I had some form of movement disorder, but all my tests came back clear (Full Bloods, CT, MRI, EEG, ECG, Echocardiogram) so they said they didnt know and it would go away eventually, which after several months on risperidone it did.Since then, I have had esispodes of weakness in my left hand, arm and leg, numbness in left hand and right side of face, which has progressed to almost my whole face now. These "episodes" last anywhere from a couple of hours, to weeks, accopained by that horrible fatigue and sleep problem among others.At the moment, the numbness/weakness has not gone away after 2 weeks, I broke out in the muscle spasms thing again the other day after having a shower (warm shower as I am also heat intolerant), and the fatigue has be resided to the couch, which is hard with two kiddies...I am due to see the neurologist again for another MRI.Does anyone have any clues at to what this may be? After 7 years of being "sick", im sick of being sick!!PLEASE HELP!Have they investigated for Multiple Sclerosis? Was the MRI of the brain? If it was, then maybe a MRI of the spine might reveal something.
    Anonymous 42789 Replies Flag this Response
  • i dont know much about it but some of your symptoms sound like Multiple sclerosis . Another thought i have is you could have Chronic fatigue immunity dysfunction syndrome (CFIDS). http://wwcoco.com/cfids/bernesx.htmlPOTs can be a symptom of CFIDS (they are overlapping disorders). i myself have both CFIDS and POTs. You may not be aware but severe CFIDS can cause weakness, tremors and numbness. i have been mistaken as being a parkison's disease patient by nurses at hospital who were observing my tremors and walking. (i even had foot drag happening, it was affecting one of my sides more than the other). i can get severe spasms too with issue.i have a friend who does have Multiple sclerosis, she thought i had MS like her due to my symptoms (very similar). My symptoms really vary. For POTs it can be managed..by keeping cool and not being upright for to long. i used to exercise some on cool nights (but not in daytime when its warm as then the POTs dizziness would kick in too much). My POTs can be severe.. ive gone unconscious for 5 mins with it just from standing for 15mins. Dont stand still with it.. keep moving to keep the blood flowing better to your brain or find a chair and get someone else to hold your place in queues (that's a killer). Another very IMPORTANT thing with POTs is to keep your fluids high. POTs patients have often got low fluid volume, for some reason we dont seem to maintain normal levels (this probably explains why thirst is a POTs symptom). When my POTs was bad i was having to drink 5-7 Litres (20-28) cups of fluid a day!! to hold symptoms at bay some (It worked!). This is a very dangerous amount unless you are drinking a lot of sports drinks to keep your electrolites in balance.. the salt (its in sports drinks) is important in POTs (some take salt pills).
    taniaaust1 2267 Replies Flag this Response
  • Thanks everyone for the information.I have wondered if Multiple Sclerosis could be a possibility, but the last MRI I had came back clear, but that was just of my brain... Maybe I should push for a MRI of my spine then?I have been deficient in vitamin D in the past, but this was corrected and gets checked with every blood test I get now. I know this can cause a huge amount of problems!I didnt realise you can get weakness, tremors and numbness in CFIDS! I might research into this a bit more then... Is it common to have abnormal neurological exam tests in CFIDS? like finger-to-nose etc?The POTS symptoms seems to have improved over the years (Or I have learned to deal with them?) they dont seem to be as severe as they used to be. I still get very dizzy and my heart races but then again, maybe I have just subconciously adapted to it? I do find that I still need to drink alot tho... and always crave salt! lol I will look into the overlap of POTS and CFIDS, thanks!
    indigo 1 Replies Flag this Response
  • Seek out an Auriculotherapist for treatment and relief of your symptoms. If you can't find any one who practices Auriculotherapy in your state or local area contact www.electromedical.com for a physician in your area.
    Anonymous 42789 Replies Flag this Response
  • I didnt realise you can get weakness, tremors and numbness in CFIDS! I might research into this a bit more then... Is it common to have abnormal neurological exam tests in CFIDS? like finger-to-nose etc? Yes.. abnormal neurological exams can be a sign of CFIDs. i myself test postive on the Romberg Test (a neuro exam which CFIDS can test positive in). also "Nystagmus test may be positive and negative throughout the day, altered sympthetic modulations, subnormal and/or fluctuating dirurnal body temp" (taken from the Australian, "A clinical case definition and guidelines for medical practitioners on Myalgic Encephalomyelitis/Chronic Fatiue syndrome an overview of the Canadian Consensus Document). Things like abnormal brain waves are common too in this illness. (my EEGs are abnormal and matches what is sometimes found in CFIDS eg no normal alpha activity when relaxing with eyes shut.. fast beta) There are a whole lot of abnormalities which can show up in tests which are common in CFIDS/CFS/ME or whatever you want to call it!!!! (they arent used in diagnoses thou as not everyone has them).. be aware that there are sub groups of CFS... and the neurological one is one of the subgroups, some refer to this subgroup as Myalgic Encephalomyelitis. (and in some countries ME is said to be something completely different to CFS so this makes things even more confusing). People in England with Neurological symptoms ive been told they dont get a CFS diagnoses (they use different criteria there and many of their CFS cases can end up just being symptomic depression.. John Wesley influence in England where it is thought to be in the head some rather than something which can be an extreme physical illness).. where as for a CFS/CFIDS diagnoses in Australia and Canada.. the "clinical working case defination of ME/CFS which doctors are encouraged to use in these countries, says for point 6. ..that one has to have "At least One symptom from two of the following categories a/ Autonomic Manifestations" eg orthostatic intolerance, hypotension, POTS, IBS etc "bNeuroendocrine Manifestations" eg subnormal body temp, fevers etcc. Immune Manifesations eg food/chemical sensitivities, tender lymph notes, flu like symptoms etc This document on CFIDS sponsered by the government of one of the Australian states... has been put online "Myalgic Encephalmyelitis/Chronic Fatigue syndrome: A Clinical Case Deinition and Guidelines for Medical Practitioners" An Overview of the Canadian consensus Document". I think you will see how you fit with this illness http://www.sacfs.asn.au/download/guidelines.pdf scroll down to page 5 of this document to see how CFIDS is diagnosed in both Australian and Canada with the neuro manifestations (and you can also see there POTS is listed as one of the symptoms). It may help you to print out this offical document and take it to your doctor (even if you are in another country). Also (thou i dont agree with all on this site but it does explain the neurological subgroup of CFS/CFIDS very well).. the following is a very well known site from a very serious Myalgic Encephalmyelitis sufferer.. The site goes into detail on the abnormal tests you may have with this. http://www.ahummingbirdsguide.com/ Ive heard some say the D deficiency is very normal in CFIDS..but that is just from others with this illness ive really heard that from and not from any offical stuff ive read.. i guess sick people are inside more so less sun. i myself take mega doses of D (50 000 IU monthly dose from hospital) as my body dont convert D2 to D3 (i have no idea why). (D2 comes from sun..my D2 is normal but my active D the one we use, is very very screwed up.. normal daily supplements arent enough to keep my levels up)
    taniaaust1 2267 Replies Flag this Response
  • Have you considered lyme disease? These are symptoms of lyme disease. In fact, many MS and CFIDS sufferers eventually find out that they were misdiagnosed, and actually have lyme. BTW, the standard test for lyme is innacurate. You would need to find a lyme literate MD (LLMD) to send your blood to a specialized lab, preferably Igenex. I have lyme, and don't remember being bit by a tick, or getting the bullseye rash, which only shows up in less than half of the people who have gotten lyme disease. A good place to start researching this is Lymenet.com.
    Anonymous 42789 Replies Flag this Response
  • Have you considered lyme disease? These are symptoms of lyme disease. In fact, many MS and CFIDS sufferers eventually find out that they were misdiagnosed, and actually have lyme. BTW, the standard test for lyme is innacurate. You would need to find a lyme literate MD (LLMD) to send your blood to a specialized lab, preferably Igenex. I have lyme, and don't remember being bit by a tick, or getting the bullseye rash, which only shows up in less than half of the people who have gotten lyme disease. A good place to start researching this is Lymenet.com.I would also like to suggest you consider being tested for Lyme Disease which is caused by Rickettsia. The main way of getting this is through an infected tick bite. I have been ill for 20plus years. 10 years ago it was suggested I may have MS. They also suggest Lupus, Epstein Barr, etc, etc. For the last 5 years I was placed on medication for 'epilepsy'. I suffered SEVERE fatigue in November 09. Blood tests in Feb 2010 revealed that I have a chronic infection from Rickettsia, Q Fever, Mycoplasma pneumonia and Lyme Disease. I suffered headaches, brain fog, malaise, body aches and pains, vision and memory loss problems. There are many other bacterial infections which could also cause these symptoms. You can read about it from my doctors website: http:chronicfatiguesyndrome.co.za:) Good luck
    CityChive 2 Replies Flag this Response
  • I would also like to suggest you consider being tested for Lyme Disease which is caused by Rickettsia. I'd like to correct the info which was given here in above post. Rickettsia isnt caused by Lyme or Lyme disease.. these are separate, DIFFERENT bacterial illnesses. I dont know why so many are confusing this. Lyme is caused by the Borrelia bacteria to which i think if im remembering correctly there are 3 different kinds while Rickettsia is caused by Rickettsia bacteria (Rickettsia - typhus and spotted fever). They both can be transmitted by the same form of transmission thou but arent the same thing.. i do agree with the above poster thou it's good for anyone with CFS type symptoms to be tested for these things as 10% of lyme patients end up with CFS and my own CFS specialist has found that half his CFS patients carry Rickettsia (lyme isnt in my part of the world.. Rickettsia and it's species thou i think is all over).
    taniaaust1 2267 Replies Flag this Response
  • Hi All, This is my first time posting here... I am wondering if anyone has any suggestions as to what may be going on... Firstly, I am a 27 yo female, mother of two (6 & 9). About 7 years ago my health started going downhill. I started experiencing extreme fatigue that would bascially knock me off my feet, dizziness in which I would almost pass out like I lose my eyesight and vision for about 30 seconds but not pass out, and sleep disturbances where it became hard to fall asleep and wake up everyday feeling like I havent slept in a month.I went back and forwards to doctors, neurologists, cardiologists and had bloods and tilt table test done where I was told that I may have POTS (Postural Orthostaitc Tachycardia Syndrome) which may be causing my symptoms. I was given nothing to help it.My GP was less than useful in helping me and I basically gave up trying to get help with what was going on, so I kinda just dealt with it.Over the years, I would get periods where my symptoms would get worse and id go down for about a week until I came right. I learnt what my limits were and what my triggers where, and tried to live a normal life around them.In May 2009, I went downhill bad. I broke out in what I can only describe is near convulsions (or severe muscle spasms) and extreme fatigue. They doctors initially thought I had some form of movement disorder, but all my tests came back clear (Full Bloods, CT, MRI, EEG, ECG, Echocardiogram) so they said they didnt know and it would go away eventually, which after several months on risperidone it did.Since then, I have had esispodes of weakness in my left hand, arm and leg, numbness in left hand and right side of face, which has progressed to almost my whole face now. These "episodes" last anywhere from a couple of hours, to weeks, accopained by that horrible fatigue and sleep problem among others.At the moment, the numbness/weakness has not gone away after 2 weeks, I broke out in the muscle spasms thing again the other day after having a shower (warm shower as I am also heat intolerant), and the fatigue has be resided to the couch, which is hard with two kiddies...I am due to see the neurologist again for another MRI.Does anyone have any clues at to what this may be? After 7 years of being "sick", im sick of being sick!!PLEASE HELP!Please be tested for Lyme Disease right away! I've had all your symptoms for years and was finally tested positive for Lyme. My doctor and I were blown away, for I never saw a tick or the typical bullseye rash. I HIGHLY recommend everyone become familiar wth this disease and the misinformation out there: 1) First off, you don't need to go hiking in the woods to be bit by a tick, and they can be in your own backyard, ballfields, etc. 2) Almost all states have reported Lyme, and you can't rely on the CDC's underreporting (According to them, Virginia Beach has few cases, but many locals tell of knowing somebody here who has contracted Lyme, and our newspaper has confirmed the disease is spreading and multiplying here.). I urge everybody to become aware of this terrible disease that can mimick many other diseases, including autoimmune diseases, gastrointestinal disorders, and heart problems. Furthermore consult the ILADS website because many doctors who aren't familiar with Lyme don't know which tests to order or how to properly treat this tricky disease.Best of luck, and don't ever give up on trying to find answers!
    Anonymous 42789 Replies Flag this Response
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