Discussions By Condition: I cannot get a diagnosis.

Odd, Multiple Symptoms - Can you help?

Posted In: I cannot get a diagnosis. 23 Replies
  • Posted By: Anonymous
  • October 29, 2006
  • 01:39 AM

Hello,

I would like to know if anyone can help me or if they have similar symptoms. I have been searching and going to doctors and no real conclusion.

My symptoms started this past August I was cleaning my house and suddenly got very week, and so tired, I couldn’t keep my eyes open or my head up, I thought I needed to eat so I tired but I just couldn’t put the energy into it. It’s just hasn’t stopped since that first time.

Symptoms:
Dry mouth
Heavy head
Week Neck
Weakness in arms, legs – feels very heavy; a cookie was too heavy for one arm to hold up. I can’t walk by myself, my legs feel like jello I can’t control my arms, if I try to pick up a cup it take a while for my hand to find the cup
Slurred speech – can’t get the words out right
Mind completely with it – no confusion
My mind is slow – feels like I just out of it
Slow reactions, I know I have to pick up to move something but my arms don’t do it right away
Twitching or Jerking of neck, arm, legs, some times all sometimes just one – some times none
My eyes can’t focus on one thing, like to watch TV my eyes won’t stay there
More recently - tingling in arm, or just one finger, legs feel itchy inside, my hand can't keep still I need to rub my face or something to keep them busy.

I did suddenly get excema last year the dermatologist thought it was odd, because I am 28 was 27 then and he said usually excema just doesn’t start, normally early childhood. Assuming unrelated but wasn't sure.

I have gone to the ER, and multiple doctors, the ER thought I was having a stoke (very similar symptoms they told me) but that wasn't it. I have had MRI, MRI with Contrast, CT Scan, EEG, EKG, and lots of blood tests– everything comes back pretty much normal other then the MRI shows small pituitary tumor (blood test for hormones comes back normal) and a small cyst in the cerebellum. The doctor thinks that it may be the small tumor but with the blood test being normal there really isn’t anything that they can do.
If everything is normal then what would be causing these symptoms?

Can anyone help?

Thank you for listening.

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23 Replies:

  • My aunt had the same problems, and her diagnosis was brain cancer. It took a long time for them to find it. Finally diagnosed last year after a stroke. She smoked for years and I'm supposing the cigarettes caused the cancer. But, my sister has a large tumor on her anterior pituitary gland, caused many of the same problems. You might want to see an Endocrinologist. They may be able to help.
    Anonymous 42789 Replies
    • October 29, 2006
    • 02:28 AM
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  • Sounds like it might be down to the pituitary tumour as the doctor says and the advice to see an endocrinologist is definitely worth following. These things can be removed (and they don't saw the top of your head off!!!). It would be interesting to see what blood tests have been carried out. Only an endocrinologist would know the correct ones.
    Anonymous 42789 Replies
    • October 29, 2006
    • 10:36 AM
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  • Thank you for both of your replies, my doctor has suggested a nero-surgeon but not an endocrinologist, I will ask him about seeing an endocrinologist, hopefully they will be able to help. Thanks again! :)
    Anonymous 42789 Replies
    • October 29, 2006
    • 01:34 PM
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  • I too have experienced many of the symptoms you explained, but drs cannot find out whats wrong. I get so frustrated that I give up trying to find out. Let me explain some of my symptoms. Left upper thigh numbness with very painful lumps under the skinStiff neck, at times I feel as if my head weighs to much for my neckHead aches right side with a swollen lump at the base of my skullleft leg that cramps and jump right up off the bed at nightMild chest pains that make my heart beat so hard I can hear itLeft hand , ring & pinky finger go numbleft elbow, goes so numb I have dropped the telephoneeyesite getting bad left sideLeft leg swollen 3 3/4 inches bigger then right from hip to ankleLast but not least cannot stand more then 30 min without getting a back ache on left side
    tashalyn 2 Replies
    • October 31, 2006
    • 03:30 PM
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  • Tashalyn, it sounds like back/ neck problems might be causing a lot of your symptoms. I am not sure what you mean by the lump at the base of your skull, but thus could be a vertebra (if in the centre) or a tensed neck muscle(if at the side) due to a misaligned neck . If it is not, then you must get it checked properly.Irrespective of that, the lumps in your thigh and swollen leg are something you must get checked out.
    Anonymous 42789 Replies
    • October 31, 2006
    • 03:57 PM
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  • Tashalyn, it sounds like back/ neck problems might be causing a lot of your symptoms. I am not sure what you mean by the lump at the base of your skull, but thus could be a vertebra (if in the centre) or a tensed neck muscle(if at the side) due to a misaligned neck . If it is not, then you must get it checked properly.Irrespective of that, the lumps in your thigh and swollen leg are something you must get checked out. I have a dr apponitment coming up next week I will talk with him about the possibility of back/neck problems, the lump at the base of my skull is on the right side it swells so much at times it hurts to touch it. That is where the headaches start. I have had the lumps in the leg checked by numerous dr and none can find the problem, not sure if they are doing the right test. Thanks for your input.
    tashalyn 2 Replies
    • October 31, 2006
    • 04:19 PM
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  • Hi - I know exactly (well almost) what you're going through. I have some of the very same symptoms and no one has found anything yet. It's great to hear that all my tests keep coming back negative, but like you said, it can't be normal. Here are some of the symptoms I'm having - sudden extreme fatigue feeling off balance (sometimes room spins)sharp shooting pains in head (sometimes accompanies this)extreme weakness thru-out whole bodyMy 1st episode was in May of 2006. That time I didn't faint - I came pretty close, but was able to sit down against a wall & stop it. I got very weak, dizzy, and it felt like someone was poking me in the head with a sharp object. My friends took me in to the ER where they hooked me up to an IV and did a bunch of blood work. Everything came out just fine. Went to my Doc for follow up. Tested for diabetes, hypoglycemia, thyroid, all kinds of lab work. Everything looked great.2nd time was Aug. 7th - this time I came home from work - laid down for a minute because I felt kind of funny. Then I got up & started to walk into the lvgrm - all of a sudden I felt like I couldn't keep my eyes open, my body got extremely weak, felt a little off balance, & then I just slid down the wall onto the floor. That time I was taken in via ambulance. More blood work, chest xrays this time, nothing. Everything looked great, in fact, they said the blood work looked even better this time (whatever that means).3rd time - Sept 25th -On my way back to work in my vehicle. Left a friends house, got to the end of her st. & had to pull over to curb. Sudden fatigue, weakness, dizzy. Woke up in my car 15 minutes later. Drove back to work in a daze. Walked into restroom & it all started again. Fainted just as co-worker walked in & caught my head before it hit tile floor. Back to the ER via husband this time - all blood work and tests good (again).4th time - Oct 18th - Sitting in a restaurant with friends after dinner. Sudden fatigue, off-balance feeling, weak. My friend said I lost all color in my face & then I was out.Have now had an Echo (looks good), tilt test last week (happened during test - but cardiologist determined not heart related). Trip to neurologist is scheduled for tomorrow. After each of these episodes, I am very lathargic for the next 2 - 3 hours, and very tired day following. My husband says my speach is very slurred.Sometimes my heart would feel like it was racing after I came back around - that's why all the heart tests. Apparently it's not the heart though. The MVP they diagnosed 7 years ago could not be detected on this last ECHO - didn't know those could go away.Keep after your docs - Like you said - it is not normal. If it was everyone would be going through it. You know your body better than anyone. I wish you luck - I know how scary & frustrating it is. Have you tracked when it happens (dates)??
    Anonymous 42789 Replies
    • October 31, 2006
    • 06:17 PM
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  • Unregistered 70, I wonder if you might have some form of chronic fatigue. It can effect people differently and sudden exhaustion is one of the symptoms. Tashalyn, the lump sounds as if it might your neck muscles knotting up. You can sometimes identify this. If you sit bolt upright and tuck your chin into your chest, does it make a difference? Another test is if you gently pich the top of your shoulder (where it meets your neck) between your thumb and forefinger, is it tender? If so, carry on pinching and does this affect the size of the lump? If yes, then the answer points towards a neck problem. This could explain the numbness in your arms and your stiff neck and headaches. It could also explain if you sometimes feel off-balance. The thigh numness might originate from lower down your back. The tests above are harmless but you should still check it out with your doctor. Good luck!
    Anonymous 42789 Replies
    • November 1, 2006
    • 11:53 AM
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  • Hi Unregistered70,Wow! Your symptoms sound a lot like mine, I have never fainted but much of the others are the same. I don't keep track of the dates on paper more in my head, but it is becoming easier because almost every day I have the period of extrem weekness and fatigue. It's hard to deal with, my doctor said that I shouldn't drive, so I have to be driven everywhere by my husband who doesn't mind but still it bothers me. I have noticed that if I am working or concentraing on something it doesn't seem to happen as often, it's more when I relax to watch TV or take a lunch break at work...etc. It's very odd. I also seem to get the chills where my teeth start chattering but I'm not necesserly cold, just can't control my jar. If your doctor can tell you anything would you mind passing the info so that I can check with my dr. I can do the same but I have pretty much given up on Dr apt. they want to do another MRI in 3 months and basically wait and see what happens till then...not really sure where to go from here. It is good to know that I'm not the only one but I'm sorry that you are going through the same thing (pretty much) it's scarry when the professionals can't help....THank you for your posting.
    Anonymous 42789 Replies
    • November 3, 2006
    • 00:31 AM
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  • I think going to a neurologist would be a good idea, it sounds like you have possibly got MS, that is what my daughter has and she hads many of your symptoms too. I didn't read all of your replies so I don't know if anyone else suggested this already but I think it is worth checking into....
    Anonymous 42789 Replies
    • November 3, 2006
    • 01:47 AM
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  • Good morning Unregistered28,Yes, I will gladly let you know of anything my doc says. Same with you please. I already worked with the cardiologist who said it's not heart-related. So now I'm working with a Neurologist. I go today for an EEG and Monday for an MRV & MRA with & without contrast so we'll see. Have they sent you to an ear specialist yet? I've heard that sometimes the whole off-balance thing can be related to some sort of inner ear thing. We have a homeopathic doc where we live who has done some pretty amazing things for people thru natural healing. She is also qualified to read lab work. I'm thinking about having some more blood work done & have her read it. So that's an idea that you may look into. I've heard a lot of great things about a man named Gary Null. You can get info on him on the web. He's a natural healing doc that's been on tv, he does clinics, all kinds of things. I've just started reading up on some of his stuff. None of that may appeal to you, but it's an idea, it definitely can't hurt. I, for sure, would get a 2nd and 3rd opinion, because what you're going thru is definitely not normal either. Good luck.Keep in touch.
    Anonymous 42789 Replies
    • November 3, 2006
    • 03:42 PM
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  • Why is it that good doctor's take at least 3 weeks to get in and the bad one's can see you tomorrow.I had the neurologist from ***l yesterday and of course I was able to see him right away. Now I know why. Anyway, he dismissed me in about 15 minutes, told me to do some traction and more PT and basically stop wasting his time.My symptoms have been:1. Very stiff neck with muscles that feel very imflammed, especially on sides and near lymph nodes.2. Pain and discomfort that radiates out to shoulders and head3. Severe weakness in rest of body that includes both chills and fever.4. Strange overall body sensations that are really hard to explain. I'm sure you know what I mean.My diagnostics have included everything from head/neck MRI, ct scans, blood workups (too many to name).Also Lyme disease. The only thing revealed is I have an elevated amount of heavy metal in my system (especially mercury, lead and tin). The naturopath thinks there's about a 50% chance that my symptoms and the results are correlated.Does this sound vaguely familiar to any of you out there. I've been on a leave of abscence for a couple months so it's been pretty serious.Thanks in advance.sj
    Anonymous 42789 Replies
    • November 3, 2006
    • 11:38 PM
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  • Hi Unregistered 70,I had one episode like that where I did faint. I don't like to be the center of attention and of course it happens in the middle of the mall during a busy Saturday afternoon.It was extremely scary. To wake up with paramedics around you but what was worse for me was I lost my short term memory. I couldn't remember the movie we just saw an hour prior, I didn't know my phone or address etc.Anyway, I had the MRI and Ct scans done. The neurologist did a sleep and food deprevation EEG as well. No spinal taps. Everything came back normal and they just chalked it up to a culmination of things.Does it make you weary of where you're going? I avoided malls and other places I felt vulnerable at. Couldn't drive for 3 weeks.BTW, what does MVP represent? Good luck,sj
    Anonymous 42789 Replies
    • November 3, 2006
    • 11:51 PM
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  • Since March 2006, I have been off work for the same symptoms you are describing: vertigo, nausea, vomitting, headaches, pins and needles in neck, hands and feet are burning, sudden weakness in the legs, feeling so tired...Two specialists gave me a possible diagnostic: MS.My neurologist thought it was a nerve or muscle disease.But all tests came back negative. They tried everything possible to figure it out.Now they are left with only one possible scenario:Myalgia Encephalomyelitis or Chronic Fatigue Syndrome.The internist confirmed this last Monday.I hope this info will help you.
    Anonymous 42789 Replies
    • November 4, 2006
    • 01:56 PM
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  • For what it is worth, I had these symptoms and they came on after a stomach bug last year. It was very strange in the sense I could feel perfectly well one minute and the next I was literally going to sleep on my feet. At one stage I collapsed and was taken off to hospital. Like the others here, tests could not identify anything. My optician suggested I was suffering a post-viral syndrome (chronic fatigue), as apparently I had conjunctival follicles (spots under the eyelids that follow an infection). I am almost back to normal now and can only pass on what I did. All of this was down to my own research and deduction (I am a research scientist), since there doesn't appear to much of a recommended course of treatment. The first thing that I did was to embark on a fresh food diet. I also took a range of antifungicidal herbs as I did appear to be suffering from some fungal infections. The impact of this was to feel quite bad for a few days, but to feel much better after that. I found the feverishness that I suffered periodically was associated with reactive hypoglycemia. This I controlled by regular eating (and strictly NO sugar). The sleepiness did not appear to be related to blood sugar levels. The final piece was to do light exercise. I am currently walking about 6 miles a day and there is no doubt that this has improved things dramatically. Perhaps one reason is because it is enabling me to sleep better (insomnia was a bit of a problem at times). Another is that it has loosened my neck which was causing dizziness. If I made a mistake here, it was by not programming it and trying to do too much too quickly. One thing that I did notice was that I had a very low body temperature 35 deg C (95 deg F) in the mornings which slowly crept up during the day. This low temperature might have been associated with the tiredness. It seems to be back to normal now. I am not saying this is the same as anyone else has here, it is just my experience, some of which you might remember if all else fails. It hasn't been easy though. It is cold and dark outside now but I have to do my 2-mile walk!
    Anonymous 42789 Replies
    • November 4, 2006
    • 08:16 PM
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  • Hello all,Thank you to everyone who has replied I really appreciate your thoughts, and help. I hope everyone is doing well.I actually have gone to an ear doctor who pretty much couldn’t figure out why I would see him, but I was told the same thing that it could be related to an inner ear thing. So, he really was a waste of time and didn’t help me. I think that I am going to get a second opinion from a neurologist the one that I saw said that because he couldn’t figure out anything else that it must be migraines (literally what he had said to me) and he would just give me some migraine medicine and anti seizure medication – that I would have to be on the rest of my life. No thank you I said, I’m not going to take medication just for the fun of taking it. I hate taking pills, and to take strong ones for something he was guessing at (really what he said) I just didn’t feel comfortable.I am also on the shy, quite side, I dislike being the center of attention also. So yes I do avoid going certain places especially when I feel run down over all. Even when I have friends over if I feel “off” (as I now call it) I will go into the bathroom or my bedroom to try to let it run it’s course so other’s will not see. I had an episode in front of my sister and I was embarrassed. In front of my husband I am ok, I feel bad for him though, because he wants to help but there’s nothing to that he can do. The whole thing really makes me crazy because I’ll be fine working around the house, watching TV etc…and all of a sudden I can’t keep my head up, my arms are so heavy, my speech is slurred (like I had been drinking all day or all week) and I’ll start shaking. I just don’t get it. Sometimes I really think that it is all in my head, and the doctor’s not being able to help just make me feel worse. Slink59 - The MS diagnosis, I was worried about, some of my family and friends were asking it that was what it could be. I would like to learn more about it. Does it come on all of a sudden like that? I was making my bed yesterday and the sheets were to heavy for me, sometimes brushing my hair is to much for my arms they hurt so bad just from making them work (brushing hair, brushing teeth, etc) Jpheim – yes my neck does get stiff sometimes, I do have severe weakness in my body that often accompanies chlls but no fever that I have ever noticed (but then again I usually don’t get fevers even when I’m sick with infection like a sinus infection or anything – no fever) I do have strange body sensation but I’m not sure if they are the same as yours – it’s like antsy almost like my legs and arms itch inside (hard to explain).Unregistered70 – Yes, I will let you know of anything I hear from my doctor(s) hopefully someone will know what is going on…I have done the EEG too and that showed nothing. Actually the homeopathic thing doesn’t sound like a bad or crazy idea. I was actually thinking of going to a psychic that I know to see if they can tell me anything. Haven’t gone yet though.Nat1264 – Thank you for your insight, Myalgia Encephalomyelitis or Chronic Fatigue Syndrome has not been something that had been brought up to me my any doctor. How do they confirm this? What type of doctor was able to give you the diagnosis?Kenn – I actually was thinking about making excise part of my normal daily routine to see if it would help. Thank you for your post and I will try to see if it helps. I have to go get my eyes checked next month – maybe they will see something that will help me.Thank you all! :)
    Anonymous 42789 Replies
    • November 5, 2006
    • 07:01 PM
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  • ME unfortunately cannot be confirmed and is something that is ruled out by process of elimination. There are ME specialists and a lot of sympathetic doctors, but there are sadly some dangerous ones still who assume it is all in the mind (because there isn't a blood test for it). There are no drugs to treat it. Antidepressants have been experimented with and the results have been hugely mixed. A few have reported an improvement, but an equivalent number have reported extremely adverse effects. The recommended treatment is to follow the kind of programme that I did (diet, exercise, relaxation). You must not exercise too much however. It will not help and you need to follow a sensible programme. People who are usually very active are those that are found to be prone to ME (and you sound like one of these - as indeed I am). It might be a case of not allowing the body to repair, but who knows? It might be worth just checking your body temperature to see if it is normal (low temp can be an indicator of ME). MS is another disease that is diagnosed by a combination of symptoms. I think an MRI, spinal tap and EEG can be used to help identify it. But I wouldn't start thinking it is that yet. It does not seem the most likely diagnosis. Good luck and let us know how you get on!
    Anonymous 42789 Replies
    • November 5, 2006
    • 07:51 PM
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  • PSI should have added that you will need to ask your optician to look for conjunctival follicles. He/she should peel your lower eyelid back and look for small spots. They are perfectly harmless and are supposed to last about three months (I think). It is not part of a normal sight test and they do not affect your sight. You will probably need to get an optician who is experienced and knows what they are doing though.
    Anonymous 42789 Replies
    • November 5, 2006
    • 09:28 PM
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  • I have just about or all of the symptoms you guys have. It started when I was 21. I had a tingling in my left hand that came intermittengly. Throughout the past years I stacked on more and more symptoms but yet MRI"S and all other tests showed up negative for anything. I had doctor's try to make me believe it was all in my head or I was depressed. When I was 24 I gave up because I felt too embarrassed to even attempt to find help because I felt as if I had to prove my symptoms which makes you feel horrible. When I was 26 as painful as it was I noticed that when I lowered my head as if to look down I would get a vibrating or electrical shock feeling. I had lost just about lost all use of my left hand and kept it balled up most of the time. I then started too lose sight in my left eye and rapidly. I went to the doctor only to check my sight. I was sent to an opthamologist who actually listened to me. He reperformed all of these tests and it came back that I have primary progressive MS. My spinal cord is swollen which is why I had the eletrical feeling and lesions on my brain that caused the dozens of other symtoms I experience daily. I just wanted to point out that I had MS long before an MRI ever picked it up. So be dilligent and demand that these test are repeated often it could save your life, I'm 29 now and it may have saved mine.
    Anonymous 42789 Replies
    • November 6, 2006
    • 11:38 PM
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  • You are sound like you are experiencing Synacope. In the mentime raise your salt intake and make sure your hydrated. I also suggest that you talk to your doctor about Dysautnomia. The symptoms of Dysautnomia are cold hands and feet, fatigue, and dizziness when standing up. It's worth a shot to talk to your doctor about it!!
    Anonymous 42789 Replies
    • November 7, 2006
    • 01:14 AM
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