Discussions By Condition: I cannot get a diagnosis.

young, undiagnosed, and frustrated

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: Anonymous
  • July 16, 2007
  • 01:51 AM

Hi All,

As with most of you, I have a slurry of odd neurological symptoms but no answers. If you wouldn't mind looking over my list of symptoms, I'd certainly appreciate any input that you might have. I have an appointment with a new neurologist in 2 days. I'm pretty jaded about doctors, but I won't get into that right now. Here are my symptoms:

1) Full-body spasms, or myoclonus. This began suddenly a few years ago, lasted for several months, and then subsided. Magnesium supplements were very helpful.

2) Shortness of breath. Also lasted for a few months after initial onset, went away, but I still have problems with it occasionally.

3) Tremor. In right wrist, and occasionally head bobs, too.

4) Difficulty walking. This happened in October, lasted 4 days and then went away.

5) Slurred speech. Only lasted 2-3 days.

6) Tingling in left hand and forearm

In short, I'm concerned about (severe) neurological symptoms that show up for a while, subside, and then come back after months, or even years. I am symptom-free 90% of the time. My experience so far has been that if I'm not exhibiting a particular symptom the exact moment I walk into a neurologist's office, they say "well, you look fine now." or insinuate that I'm making things up. I'm only 22, so I'm concerned about how these relapsing symptoms will affect my future.

Also, any tests you think I should push for?

Thanks so much!

Reply Flag this Discussion

17 Replies:

  • Does anything tend to bring your symptoms on eg stress, exertion?
    taniaaust1 2267 Replies Flag this Response
  • Hi--thanks for responding :) To answer your question, no. These symptoms appear and disappear very randomly and I have been unable to correlate them in any way to stress levels, menses, exertion, sleep patterns, etc. I am otherwise healthy.
    Anonymous 42789 Replies Flag this Response
  • Hi All, As with most of you, I have a slurry of odd neurological symptoms but no answers. If you wouldn't mind looking over my list of symptoms, I'd certainly appreciate any input that you might have. I have an appointment with a new neurologist in 2 days. I'm pretty jaded about doctors, but I won't get into that right now. Here are my symptoms: 1) Full-body spasms, or myoclonus. This began suddenly a few years ago, lasted for several months, and then subsided. Magnesium supplements were very helpful. 2) Shortness of breath. Also lasted for a few months after initial onset, went away, but I still have problems with it occasionally. 3) Tremor. In right wrist, and occasionally head bobs, too. 4) Difficulty walking. This happened in October, lasted 4 days and then went away. 5) Slurred speech. Only lasted 2-3 days. 6) Tingling in left hand and forearm In short, I'm concerned about (severe) neurological symptoms that show up for a while, subside, and then come back after months, or even years. I am symptom-free 90% of the time. My experience so far has been that if I'm not exhibiting a particular symptom the exact moment I walk into a neurologist's office, they say "well, you look fine now." or insinuate that I'm making things up. I'm only 22, so I'm concerned about how these relapsing symptoms will affect my future. Also, any tests you think I should push for? Thanks so much! If it was me, I'd push for them to do a MRI .. to check for things like Multiple sclerosis. My own doctors cause I have some of your symptoms, themselves sent me for MRI "MS can cause a variety of symptoms, including changes in sensation (hypoesthesia), muscle weakness, abnormal muscle spasms, or difficulty to move; difficulties with coordination and balance (ataxia); problems in speech (Dysarthria) or swallowing (Dysphagia), visual problems (Nystagmus, optic neuritis, or diplopia), fatigue and acute or chronic pain syndromes, bladder and bowel difficulties, cognitive impairment, or emotional symptomatology (mainly depression)." "MS primarily affects adults, with an age of onset typically between 20 and 40 years, and is more common in women than in men" "Multiple sclerosis may take several different forms, with new symptoms occurring either in discrete attacks or slowly accruing over time. Between attacks, symptoms may resolve completely, but permanent neurologic problems often persist, especially as the disease advances" http://en.wikipedia.org/wiki/Multiple_sclerosis Dont panic but it may be a very good idea to push your doctors for more tests.
    taniaaust1 2267 Replies Flag this Response
  • Will do--thanks for the info
    Anonymous 42789 Replies Flag this Response
  • Hi, I also think you should push for an mri. I had sudden onset of tingling and numbeness when i was 23 my doc referreed me to a neurologist. The tingling went away then a few months later came back in my leg. This went away after a week and then recurred in my face again. The neuro sent me for an mri but said if was clear didnt want to see me again. The mri showed lesions and i was confrimed with ms. Other symptoms i have suffered are eye pain, muscle spasm and stiffness in limbs. It can be very frustating not knowing.. been there done that. Im not saying you have ms, but i think you should push for mri so they can rule this out as a cause. PS A quick word about MS - i have had this for three years and so far i have coped with it very well. It has had little if any affect on my everyday life so far.
    Erica123 7 Replies Flag this Response
  • Yeah, at this point, I'd rather find out something than nothing. Did you have the MRI done with contrast, or did the lesions show up without? I've heard that a regular MRI may not show lesions in early phases of disease. Also, do you happen to know of other conditions that symptomatically similar to MS? I'm just trying to think of extra questions to ask my doc. Thanks for your reply--best of luck with everything!
    Anonymous 42789 Replies Flag this Response
  • Hi,The MRI was done with contrast i think. After the first fifteen minutes they injected something into my vein which made my arm go cold, i can only assume this was a contrasting agent. Each time i have had an mri (four times in total) it has been done this way. I have seen the images and the lesions were very clear. I dont think that many illnesses have similar symptoms for MS. Not if you include all of the neurological symptoms you have described, ie sensation change, tremor, muscle spasm, stiffness. Particularly if each symptom accurs at different times. The only real tests they did for my symptoms were the mri. Some blood tests were done but these all had normal results. I had a lumbar puncture also after the mri. These can show certain antibodies present in your spinal fluid which indicate MS but are not 100% accurate as shown by mine, which came back clear although the MRI had confrimed the diagnosis. Honestly try not to be too worried about it. I am currently suffering with a undiagnosed bowel condition which started out of the blue two months ago. They think i have severe IBS or maybe crohns disease. This is unrelated to the MS and i would much rather be having a MS relapse than this. Is it today you see the new neuro? What did they have to say? Have you looked at any MS websites? I am in the UK and their website www.mssociety.org.uk have a great forum for people undiagnosed. The rest of the site is also very good. Good luck - try not to worry. Erica As MS can affect pretty much
    Erica123 7 Replies Flag this Response
  • I went to the neurologist today--to make a long and demeaning story short, he begrudgingly ordered an MRI after I requested it, but only after explaining to me that "If it's going to make you feel better to get an MRI, then get an MRI. I guarantee you that your nervous system is 100% healthy but people like you just can't get it out of their heads that there is something wrong with them. Your symptoms are completely benign." I find it interesting (and appaling) that he came to this conclusion without running ANY tests. Funny how he thinks difficulty walking and difficulty speaking are "benign symptoms" as long as they are not present all of the time. Putain. Anyhow, at least I got the MRI, right?
    Anonymous 42789 Replies Flag this Response
  • MS is late stage Lyme. This is not a guess or a speculation. It is a fact in many cases. As an alt doc involved with many conditions, I keep studying and learning. (did that impress you ? I ask because so few listen that I feel I am wasting my time) Your neurologist is a knucklehead, talking to you and treating you like that and with no exam. Let's suggest he walk in your shoes for a few months, OK ? Hospital tests for lyme are worthless. Labs that test correclty are Bowen and Ignenex. For finding a Lyme Literate doc, I suggest www.lymenet.org What state are you in ? I know a number of alt docs throughout the country and may know one to personally refer you to.
    Anonymous 42789 Replies Flag this Response
  • I went to the neurologist today--to make a long and demeaning story short, he begrudgingly ordered an MRI after I requested it, but only after explaining to me that "If it's going to make you feel better to get an MRI, then get an MRI. I guarantee you that your nervous system is 100% healthy but people like you just can't get it out of their heads that there is something wrong with them. Your symptoms are completely benign. I find it interesting (and appaling) that he came to this conclusion without running ANY tests. Funny how he thinks difficulty walking and difficulty speaking are "benign symptoms" as long as they are not present all of the time." obviously he must think you are a hyperchondriac or something... it sounds as if you need to find another neurologist, he obviously isnt believing you!!! That is a crap way to treat a person. Im very glad to hear that he's agreed to the MRI (even if it is only to get you off his back!). The question I asked you before about whether you symptoms come on after stress or exertion were cause CFS/ME can have similar symptoms as MS in some (MS symptoms and a whole like ot others) .. but in that case the symptoms come on post exertionally..but from what you said it doesnt sound like you have CFS (ME). A lyme test is probably a very good idea too.
    taniaaust1 2267 Replies Flag this Response
  • Change your doctors, but see what the mri says and rub it in his face if he is wrong...
    Monsterlove 2921 Replies Flag this Response
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  • ya,you need to change a doctor and see what they diagnose.Previous doctor might be right or wrong 50/50% ,you cant take the risk.Just in safety, get a MRI better you do nothing...:)
    Anonymous 42789 Replies Flag this Response
  • Hi everyone--thanks for all the good advice. I had the MRI today and it came back clear, so no MS. While I was glad to hear that, now I'm back to square one and still don't have and any answers or (more importantly) treatments for my condition. :confused: Any other ideas? I'm so frustrated with this whole thing. Thanks again for the responses.
    Anonymous 42789 Replies Flag this Response
  • Well, that is good news. Are you being exposed to carbon monoxide, either at work, your vehicle exhaust, home at at an on again off again friend? Try to check all locations with a CO detector. Have a gas leak on your stove's pilot light or water heater?
    Monsterlove 2921 Replies Flag this Response
  • Thanks for the advice--that's definitely a good thing to look into that I hadn't thought of. I've lived in 5 places in the past four years (I just graduated from college, thus the frequent moving) and have experienced symptoms at each location. I drive very infrequently, as I live in a large city, although the onset of the slurred speech did begin on the drive home from a family reunion. Do you know of other environmental toxins or agents that I may just have an increased sensitivity to? Thanks again--I'll look into the CO thing. I really do appreciate the input and am thankful for the community on this website.
    Anonymous 42789 Replies Flag this Response
  • I have been undiagnosed for over 8 years and am reaching an end. I know this thing will kill me soon. Doctors take a few blood tests and say, well there is nothing wrong with you, when clearly there is. Life threatening symptoms, and even if i request tests to be done, they will not comply or take me seriously because ive been labeled schizophrenic. I asked for an MRI and the doctor said ok, gave me a referral slip to a doctor at the hospital who is able to give MRI'S, doctor turns out to be a ****ing psychiatrist, when i already have a psychiatrist who knows that i am a very stable minded person. In my opinion, these bastards should be ****in executed. They ignorance and arrogance causes more deaths then drugs do. If you want to be taken seriously, find someone out there who will not rest until he has found the cause of your symptoms. Went to a specialist earlier, and he told me that i was in great danger. CRP levels were on fire!!!. B12, Folate, D3 all severely low, histamine could not be detected. Suspects a serious infection that could have been causing my symptoms for over a decade!!!. Having symptoms similar to pulsless disease. Probably be dead soon, thanks to the ****wits that are supposed to be the most responsible and caring members of society. These days it has nothing to do with anything other then money.
    Anonymous 42789 Replies Flag this Response
  • I've had similar but strangly odd things going on as well still without diagnosis. However;with the symptoms you are describing it sounds like you should try going to an Orthopedic Doctor/surgeon - that deels with nerves,mucle and joints etc. good luck this is my first log.Hi All, As with most of you, I have a slurry of odd neurological symptoms but no answers. If you wouldn't mind looking over my list of symptoms, I'd certainly appreciate any input that you might have. I have an appointment with a new neurologist in 2 days. I'm pretty jaded about doctors, but I won't get into that right now. Here are my symptoms: 1) Full-body spasms, or myoclonus. This began suddenly a few years ago, lasted for several months, and then subsided. Magnesium supplements were very helpful. 2) Shortness of breath. Also lasted for a few months after initial onset, went away, but I still have problems with it occasionally. 3) Tremor. In right wrist, and occasionally head bobs, too. 4) Difficulty walking. This happened in October, lasted 4 days and then went away. 5) Slurred speech. Only lasted 2-3 days. 6) Tingling in left hand and forearm In short, I'm concerned about (severe) neurological symptoms that show up for a while, subside, and then come back after months, or even years. I am symptom-free 90% of the time. My experience so far has been that if I'm not exhibiting a particular symptom the exact moment I walk into a neurologist's office, they say "well, you look fine now." or insinuate that I'm making things up. I'm only 22, so I'm concerned about how these relapsing symptoms will affect my future. Also, any tests you think I should push for? Thanks so much!
    Anonymous 42789 Replies Flag this Response
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