Discussions By Condition: I cannot get a diagnosis.

non-specific neurological symptoms

Posted In: I cannot get a diagnosis. 33 Replies
  • Posted By: Anonymous
  • June 22, 2007
  • 01:01 AM

Hi,

I am a 33 year-old woman from Sydney, Australia. At around the time I turned 31, I developed symptoms, such as extreme fatigue, a numb left arm, blurred vision and what they call "urge incontinence" (having to go to the bathroom as soon as the urge strikes and being unable to hang on). During this time, I would wake up in the mornings having pins and needles in both arms up to around the elbows. I was alarmed by these symptoms as I thought they might be associated with multiple sclerosis. However, I went to the neurologist and had an MRI of my head and neck done and was told that my brain was perfectly normal. The neurologist thought that the symptoms were caused by a couple of discs in my neck impinging onto my spinal cord (I think he referred to this as "degenerative spinal disease" but can't remember). He said that this might get worse with age, in which case spinal surgery might be required, but, in the meantime, there was nothing I could do about it. I then went to a musculo-skeletal specialist who told me that he disagreed with the neurologist's diagnosis, and said that quite a number of people have discs impinging on the spinal cord to the degree that mine did, without experiencing any of the symptoms I described.

Since I couldn't get a clear answer, at this point, I gave up on trying to get a diagnosis. I was also less motivated to get an answer because, by this time, my numb arm and blurred vision had subsided. Nonetheless, I continued to have problems with urge incontinence and although the fatigue had improved, I continued to have far less energy and resilience than I used to have. I was also troubled by a continually runny nose and weight gain (it wasn't exactly clear whether the weight gain was caused by months of inactivity due to the fatigue, when I used to be quite an active person, but I felt like my metabolism had somehow slowed down and I have never been able to get back to my former weight). Another symptom was that whenever I drank even very small amounts of any form of alcohol this would make the runny nose even worse and I would feel generally quite ill.

Two years went passed and then the numb arm and blurred vision came back for a few weeks. I then went to see a second neurologist and got more MRI scans. Again, my brain was normal. Also, the neurologist thinks that the disc obtrustions in my neck are not enough to cause the symptoms. He, therefore, told me that he thinks I have "non-specific neurological symptoms" which they can't explain but that people who have these tend not to have any permanent impairments and they might either continue to recur or disappear over time.

My problem is that I still continue to feel unwell as I am generally far more fatigued than I used to be, my nose runs constantly, I can't lose weight, I can't drink any alcohol and, to add to my previous symptoms, I have completely lost my libido. I went on naturpathic herbs and a strict diet of no wheat, no dairy and no soy for while. When I did this the runny nose cleared up but then, after I gave up on this diet and herbs, it came back again. I'm not sure if the runny nose is somehow related to having become allergic to certain things and am considering getting some allergy tests.

The picture is complicated by the fact that I have had problems with depression/anxiety since my early 20s. I have been on and off anti-depressants since that time but find I function much better and am OK when I am on them. Therefore, I am now taking the anti-depressant "lexapro". The doctors tell me that this wouldn't account for any of the symptoms I have as they are not known side-effects of the medication. I should add that I know that depression can cause fatigue and loss of libido but, having had problems with depression for such a long time, I can tell you that I don't think that it's depression this time. It feels very different when it's caused by depression.

Also, my boyfriend for the past 3 years, who I now live with, has had long-standing problems with chronic fatigue syndrome. I developed my symptoms at around the same time our relationship started. Everyone says that chronic fatigue syndrome is not transmissable between people but I am wondering if there's some connection with the symptoms I developed?

I would be very grateful for any suggestions or advice any one has about my symptoms as I am really tired of feeling unwell and not knowing what I can do about it.

Thanks,
Tamara.

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33 Replies:

  • Hi Tamara,People with multiple symptoms like me and you often look to CFS. I do think that alot of people have it, but it also scares me to see how many turn to that as a diagnosis too quickly. Our bodies are complex and doctors are only what they are... doctors. I have been having multiple symptoms the past 2 years now and I am still undiagnosed. That is why I read and try to find out as much as I can on my own. With that said there are a couple of things that struck me while reading your post. These are your symptoms:-extreme fatigue (sometimes just low energy levels)-a numb left arm, (subsided at some point)-pins and needles in both arms -blurred vision (subsided at some point)-urge incontinence -runny nose-weight gain (cannot lose weight)-alcohol intolerant-loss of libidoAlot of your symptoms could be caused by endocrine issues. Do you have any problems with your periods, vaginal changes, hair changes, skin changes, muscle weaness or pain?My first thought was thyroid problems. Have you had that looked into? If no do so, and if you have then you need to get the results from your doctors office. Even tho the doc says the tests are normal you can still have symptoms if you are borderline like alot of people are. It could also be something to do with your pituary. I know you said you had an MRI... it could be that they didnt think of it. Anyhow sometimes pituary adenoma's are so small that they have a hard time finding them. Don't let this scare you because 90% of the time adenomas on the pituary are benign, but they can cause alot of trouble and symptoms can be cyclic. I am sorry that I cant give you any answers, but I do know that you are listening to your body and when you say that you dont think it is depression, you are probably right. I hope my post helps you on your way if nothing more.
    Anonymous 42789 Replies Flag this Response
  • Hi PiaSava,This is Tamara (I have now registered and my user name is "Vivien"). Thank you very much for your response to my post - it has given me some food for thought about what to investigate next. I have had blood tests done a number of times and no-one has found any evidence of thyroid problems (though I guess I could be borderline as you suggest?). But I think I should investigate whether there are any endocrine issues, as I have had problems with my period in the past (though they have settled down now) and I noticed skin changes - for example, wounds on my skin seem to take a very long time to heal these days.Other symptoms I forgot to mention in my last post is that I have occasionally experienced a week or so where I have joint pain.Good luck with finding out what's going on with you. I really appreciate your help.
    vivien 17 Replies Flag this Response
  • Please know that CFS is a "REAL" disease. It often affects immune system, endocrine, respiratory, cardiac, musculo-skeletal and other body systems. It is the "BROAD" diagnosis and all the other diagnosis that fall under it, in fact are symtoms. CFS is the BIG PICTUREMC
    Anonymous 42789 Replies Flag this Response
  • Vivien, the side effects of Lexapro include a loss of sex drive, sleepiness and even neck pain. Drinking alcohol while taking Lexapro is not recommended by the manufacturer. I imagine that a lot of your problems do in fact stem from your neck. The runny nose sounds like an allergy of sorts, but this really could be triggered by almost anything. It is worth checking your body temperature to see if it is normal.
    Anonymous 42789 Replies Flag this Response
  • Hi Ken,Thanks for your response. I'm interested in what you say about most of my problems stemming from my neck. Could you please explain more about what you mean by this?I do know that Lexapro can result in loss of sex drive - however, I've been taking it for 3 years now and this symptom has only come up very recently. Also, I'm not sleep, just often fatigued out of proportion to the energy I've expended.When I say drinking alcohol, I'm not talking large amounts, as I've never been a particularly big drinker and, also, I know alcohol is a depressant and, therefore, not good for people with depression. But even a thimbleful of the stuff will start what seem like very weird allergic reactions. I will check my body temperature as you suggest.Cheers,Vivien
    vivien 17 Replies Flag this Response
  • Also, something I forgot to ask in my last post ... Since I wrote my original post I've looked at the neurological symptoms forum and noticed that people keep referring to the differences between an MRI with contrast and without one. I've only had an MRI without contrast. Would this affect its accuracy?Vivien
    vivien 17 Replies Flag this Response
  • Vivien, there are lots of nerves in the neck. If one of these is piched or under tension, it can give you pins and needles in your hands and can even make your arm go numb (I have woken up with a completely dead arm on occasions when I have slept awkwardly). The muscles in the neck can go into spasm also and this can seriously affect your balance and give you headaches. Stretching exercises are probably the best way to avoid this, but it is worth taking advice first (there are one or two cases when this could make things worse). It is possible that your urge incontinence could be a nerve problem also (in your back I mean), although this is a bit of guesswork on my part. Your neck might even be the cause of your blurred vision, but this could be something totally different. Your constant fatigue (as well as maybe blurred vision and a stiff neck) are symptomatic of CFS, but you can only arrive at this diagnosis by ruling out other causes. It might well be that you are just not sleeping properly and Lexapro might be affecting this. Or it might be your neck is causing you discomfort in bed or even your runny nose is keeping you awake. It is a question of trying to unpick the possible effects. An MRI with contrast is the same as without, except that you are injected with something to make you 'glow in the dark'. Basically, the picture is clearer. If your scans have been completely clear, I imagine that they have not seen any need to do another with contrast. If you had damage to a blood vessel or a tumour, this should have showed up. Where with contrast scans are better I think is perhaps in identifying MS (and it sounds unlikely that you have that).
    Anonymous 42789 Replies Flag this Response
  • The decision to use contrast is left up to the radiologist who decides BEFORE the exam which process will be used based on your medical history. If they only listed blurry vision or neck pain, the radiologist might not have had all the info necessary. MRI contrast will increase the "brightness" of tumors, scarring post-op, edema, infection etc. I'm not sure why you didn't receive it. Re: neck problems, have you received gentle massage, neck traction, muscle relaxants or jacuzzi type treatments? These might help.
    rad-skw 1605 Replies Flag this Response
  • I would very much agree with earlier posts. The symptoms initially diagnosed sound very much to be indicative of an endocrine issue, although I was not aware that most benign pituitary tumors will be missed by a standard issue MRI. Thats fairly important for myself, as I cound probably use to get myself to an endocrinologist/get a contrast MRI done so I don't have to try to find the appropriate medications for "Mood Disorder Not Otherwise Specified".Teddy
    randomness 16 Replies Flag this Response
  • Randomness, I might be wrong on this but I thought MRI without contrast detected about 90 % of benign pituitary tumours and this was increased to about 95 % with a contrasting agent. rad-skw, I suppose the decision would have to be made before the examination on whether it was with contrast or not ;) but I know what you mean. Again I might be wrong on this, but I have a feeling that contrast is less preferable for investigating disc obtrustions.
    Anonymous 42789 Replies Flag this Response
  • Kenn i'm pretty sure judging by that response that you know far better than I do lol. You sound like an actual medical professional, I was just weighing in. I appreciate the correction.Teddy
    randomness 16 Replies Flag this Response
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  • Teddy thanks, not a medical professional in the normal sense, but a research consultant who has worked in the medical sciences and epidemiology. The bit about MRI comes in because of my background as a physicist. If you want some light reading on the pituitary have a look at http://www.mdtext.com/neuroendo/ ;) there is something in there about imaging also.
    Anonymous 42789 Replies Flag this Response
  • Tamara, look into chronic fatigue syndrome. neurological symptoms were my first indication that I was really ill. The other symptoms I could always "chalk up" to something else, but not the neurological ones.CFS is a real disease and it is exploding world wideI have recently been properly diagnosed for the first time in yearsYour symptoms fit. You do not need to have every symptom listed in order to have the illnessGood Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I also have mysterious neurological symptoms, fatigue, urge incontinence and a runny nose among other things. I have a lot of pain, so in my recent research I ran across info about Schwannomatosis - little tumors on the nerves. It's a newly identified type of neurofibromatosis. See https://www.ctf.org/index.php?option=com_content&task=view&id=41&Itemid=113 for info. Does anyone know anything about Schwannamatosis? I haven't had neurological tests like an MRI or EMG since my pain began in Dec '06 (they were negative in 2003) so I'm going to go back to the neurologist and see if she wants to test for Schwannamatosis or anything else.
    sleep_pain 5 Replies Flag this Response
  • Dear sleep pain...has CFS been considered? You have classic symptoms. Have you looked into it? You should. The damage is happening at a cellular level so don't be suprised when all of the tests come back normal...Best to you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • Dear all, Thanks so much for your comments. I've been offline for a few days but, during that time, seem to have developed an additional symptom - some numbness and tingling in my left leg. I went to yoga yesterday and my left leg shook the whole time, as if this was due to muscle weakness (but it's never happened before?). The neurologist also tells me that there's some weird blur on my spinal MRI which he thinks is nothing but he needs to consult with a radiologist to double check. He told me that he would get back to me about it within a week but it has now been two. Like many of you who are in the same boat, I'm truly over this whole process. Sleep pain - it's eery that you and I have such similar symptoms. I don't think it's Schwannamatosis in my case, though, as the description of that disease lists pain as a major symptom and I am generally not in pain. But maybe I should add that there was no pain until recently and now there is some low level pain occasionally in my numb left arm, and in my left hand. Rad skw - thanks for the suggestions (massage, neck traction etc.) regarding the neck problems. I don't actually have much neck pain, I think the neck issue came up because kenn suggested that the pins and needles could be caused by a pinched nerve in my neck. I have been to the osteopath once to try to deal with my spinal alignment in case it is a pinched nerve. However, I probably need to go back a few more times - it is expensive, and not covered by my health insurance, which is why I haven't done it more often. Mommy Cat - I'm definitely not ruling out CFS, and I know it can cause an array of weird symptoms. I guess I just wanted to check out that it wasn't anything else before I decided that CFS is causing the symptoms. Otherwise, I might be missing out on the appropriate treatment for whatever it is. Thanks to you all,Vivien
    vivien 17 Replies Flag this Response
  • Vivien. You are wise to rule out any other possibility before considering CFS.It is a clinical diagnosis and that is how it is diagnosed, along with correlations of symptoms and some considerations as far as diagnositic testing and bloodwork.I suggest NAET or Bioset therapy. There are some who think it is a scam, but some people just know how to "live inside the box"I have been a nurse for a long time and it's the most wonderful medical treatment I have ever seen.I am feeling 70% better after just 3 treatments. I was very sick with CFS. I had almost every symptom (and there are many).Drink alot of water(with fresh squeezed lemon for detox)dake a daily vitaminUse sea salt(free flowing with nothing added)Eat fresh foods, not processedWishing you well and happy...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Thank you, Mommy Cat. Could you suggest a good source of information on NAET or bioset therapy? I don't know anything about either. It is good to hear that they have helped you so much. I'm already taking vitamins every day (I feel much worse if I don't do this). I try to eat fresh food but sometimes this is hard because I'm busy - but know that I should make more of an effort. Could anyone tell me of a good CFS specialist in Sydney, Australia? Dr John Graham (mentioned in another thread) sounds good but he's in Adelaide. Vivien
    vivien 17 Replies Flag this Response
  • Hi, I am a 33 year-old woman from Sydney, Australia. At around the time I turned 31, I developed symptoms, such as extreme fatigue, a numb left arm, blurred vision and what they call "urge incontinence" (having to go to the bathroom as soon as the urge strikes and being unable to hang on). During this time, I would wake up in the mornings having pins and needles in both arms up to around the elbows. I was alarmed by these symptoms as I thought they might be associated with multiple sclerosis. My problem is that I still continue to feel unwell as I am generally far more fatigued than I used to be, my nose runs constantly, I can't lose weight, I can't drink any alcohol The picture is complicated by the fact that I have had problems with depression/anxiety since my early 20s. I have been on and off anti-depressants since that time but find I function much better and am OK when I am on them. Therefore, I am now taking the anti-depressant "lexapro". The doctors tell me that this wouldn't account for any of the symptoms I have as they are not known side-effects of the medication. I should add that I know that depression can cause fatigue and loss of libido but, having had problems with depression for such a long time, I can tell you that I don't think that it's depression this time. It feels very different when it's caused by depression. Also, my boyfriend for the past 3 years, who I now live with, has had long-standing problems with chronic fatigue syndrome. I developed my symptoms at around the same time our relationship started. Everyone says that chronic fatigue syndrome is not transmissable between people but I am wondering if there's some connection with the symptoms I developed? Im not saying you have CFS/ME but i wanted to mention a few things which you may not realise about this illness. CFS/ME usually causes alcohol intollerence..which you've obviously developed. And CFS/ME "may" be transmissionable between people thou it seems rare?? (interestingly a childhood friend of mine who i used to hang out with developed it too about the same time as I.. and also a neighbour of mine. i just wonder).. but the specialists which say that, usually say it could be transmissionable only during the beggining of it. (Thou not enough really is known about it to really say). When you first met your boyfriend.. had he had the CFS for under six mths himself? I'd really like to hear your answer to that. CFS/ME has been known throughout history by many names.. and occassionally occurs in epidemics eg i'll cut and paste just a few examples "1984"From 1984 until 1992 an endemic period occurred in which an usually large number of cluster and epidemics of M.E./CFS have been recognized in North America. After an apparent initial increase in the morbidity in 1983 there seemed to have appeared in late summer of 1984 an unprecedented increase of sporadic and epidemic cases across North America. Although certain geographical hot spots seen to have taken up much of the medical interest, this endemic situation probably represents an unusual and unremitting morbidity in all areas of the United States and Canada." -Dr. Byron Hyde-54. Incline Village, Lake Tahoe, Nevada, USA"A chronic illness characterized by fatigue, neurlogic and immunologic disorders and active human herpesvirus type 6 infection." "This community epidemic, apparently started in a girls' basketball team, then involved primarily teacher in at lest three high schools, and then large numbers of the community."55. Chapel Hill, North Carolina, USA"Epidemic amongst members of The North Carolina Symphony Orchestra. Low NKC associated with high yield of lymphoma, astrocytoma, glioma."56. Montreal, Quebec-Ontario, Canada"Over 500 cases of M.E./CFS documented during August-November 1984 period. This endemic was active in all parts of Canada during this period and appears have maintained its activity until the time of writing in 1991."1984-8557. Truckee, California, USAM.E. epidemic involving teachers and students.198558. Lyndonville, New York, USAM.E. epidemic in a rural community involving children and adults.59. Yerington, Nevada, USA"In the same area an M.E./CFS-like epidemic reputedly occurred in a reservation of American Native people."198660. Placerville, California, USA"Outbreak of chronic fatigue syndrome 'coincident with a heavy contamination of the local unfiltered water supply'."198861. Sonora, California, USA"More than 35 children and adults were diagnosed with M.E. in the mountain country 100 miles from Lake Tahoe. Many of these patients were associated in some way with Columbia Community College."198962. Roseville, California, USARosedale Hopital reported 11 cases of M.E./CFS among staff.199063. Elk Grove, California, USAM.E. epidemic among teachers and students." http://fm-cfs.ca/ME_epidemic.html Interestingly Ive had CFS/ME for 10 yrs and last year I started dating a guy who didnt have good health (eg diabetes etc) so would of been more suspectable to illnesses etc. Unfortunately we both ended up finding out he ALWAYS ended up getting sick when I went and saw him and stayed the night (kissing etc).. the next day he'd be ill with sore throat etc. After the 3rd or 4th occassion this happened straight within the month or two (I wasnt seeing him that often), it had gotten to the point where he wouldnt allow me to french kiss him no more (we didnt kiss or the rest of the relationship). It seemed to be much more than just a coincidence him getting sick always after that, he certainly thought it was (he'd never had this problem with anyone else). So I suspect that something I carry may be contagious??. I have spoken to about 10-15 other CFS/MErs about this, but they havent found they end up making their partners sick (maybe it was cause mine had a lowered immunity???). There was one thou who in her case, she wasnt sure, she had noticed her boyfriend was often sick after being about her. So who knows.. it may well be possible, if the other person is susceptable!!! Much, much more needs to be known about this illness to say. ps.. im now dating a new guy and are going to go overseas to try out the relationship soon. He too has very poor health (diabetes, heart failure etc). Its going to be interesting to see if kissing me makes him sick too!! (I so so hope not)
    taniaaust1 2267 Replies Flag this Response
  • Thank you, Mommy Cat. Could you suggest a good source of information on NAET or bioset therapy? I don't know anything about either. It is good to hear that they have helped you so much. I'm already taking vitamins every day (I feel much worse if I don't do this). I try to eat fresh food but sometimes this is hard because I'm busy - but know that I should make more of an effort. Could anyone tell me of a good CFS specialist in Sydney, Australia? Dr John Graham (mentioned in another thread) sounds good but he's in Adelaide. Vivien Vivien.. nods.. yeah its best to go and see a CFS specialist IF your problem cant be worked out by other doctors once you've exhausted all other avenues. Im not sure if i would say you have CFS or not (as you lack some of the very common things which most with it say..eg mind fog) but thought the mostly Australian CFS support group, seeing you live here, may end up being helpful to you in your hunt for a doctor who specialises in CFS. There are many from sydney there and its a very friendly site!!! (people there wont mind you emailing them to ask them about who they are seeing CFS specialist) http://www.notcrazy.net/forum/index.php I know some of the leading world research on CFS/ME is coming from Newcastle..(so you should be able to get hold of a great CFS specialist if you end up needing one). Here's a couple of CFS doctors in your state, who have been recommended by people with CFS ChatswoodDr Marilyn GoldenSuite 9, 398 Victoria AvenueChatswood NSWTel: 02 9411-1533("I see Marilyn for help with CFS and MCS. She is a GP, but also has diplomas in homeopathy, clinical nutrition and aromatherapy. She has completed her study in Chinese Medicine. I have found her to be open minded and willing to work collaboratively. She "specialises" in the CFS cluster of diseases.") ManlyDr Mark DonohoeYourHealth Manly 15 South SteyneManly NSW 2095Tel: 02 9977-7888Please contact YourHealth Manly for appointments, reports or other information.Web site: homepage.mac.com/doctormark/Personal14.html("Dr Donohoe is a general practitioner who specialises in CFS, FMS, MCS and Chemical Injury.")" I went to yoga yesterday and my left leg shook the whole time, as if this was due to muscle weakness (but it's never happened before?). That's a very CFSy sign (but of cause can happen in so many other illnesses too). Did it feel like you were weak? (neurological problems are common as well in CFS/ME).
    taniaaust1 2267 Replies Flag this Response
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