Discussions By Condition: I cannot get a diagnosis.

Need help! Mystery ailment

Posted In: I cannot get a diagnosis. 22 Replies
  • Posted By: Helena
  • May 28, 2009
  • 11:32 PM

I am hoping that posting here might shed light on some of the experiences that I've had. I'll try to keep it as brief as possible.

While on a deployment to the gulf in 07 I had what is best described as a stroke like episode. I was fine and then the next thing I knew I had lost most of the major muscle control over the whole left side of my body to include my face (drooped like bells palsey), arm/hand, and leg/foot. With the loss of muscle control there was also a loss of sensitivity on that side(not total, but if pinched or poked it didn't really hurt) All on the left side. I gained a tremor and muscle twitches/spasms on the left side as well. My hand and foot will lose color if I don't keep them moving to circulate blood. I also developed a severe pain in my chest.

I spent a significant amount of time in overseas hospitals during port visits and was eventually flown back to the states for a weeks hopsital stay and numerous tests. Spinal tap, electric shock, needles in muscles, MRI's , Contrast Mri's all came back with nothing.

I was given a diagnosis of Raynaud's because of the color change to my hand. I asked how raynauds could possibly be causing all the other symptoms and was told "sometimes these things just happen".

At this point I am used to the sensory loss of that side so I don't trip over my foot as often and don't accidentally bite my lip anymore. I do have days that are worse then others however. I am left with a body that on it's best day is at 75% and on worse days I can't get up for fear of falling and won't speak much for embarrassment of the slurred lisp and no diagnosis.

I am hoping that someone else has heard of these bizarre symptoms or might have some idea what is causing it. Thanks for any help.

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22 Replies:

  • You don't remember any injuries in the weeks and months before? The onset was sudden? How do you know it wasn't a stroke?
    npcomplete 20 Replies Flag this Response
  • No, there were no injuries. Trust me an 8 month deployment is like groundhogs day so I'd remember anything significant. It was extremely sudden. I was told it was not a stroke because the nerves that would be affected criss cross at some point therefore making it impossible to have symptoms only on one side. There also was nothing notable on the MRI's which should show it. I wondered about a series of TIA's(Not sure if they can cause residual damage) but was told that because of my age that was highly unlikely.
    Helena 12 Replies Flag this Response
  • Actually a stroke is one of the few things that can effect just one half of your body like that. TIA unlikely, but not unheard of - maybe you want a second opinion about the stroke thing (and question your current doctor).
    npcomplete 20 Replies Flag this Response
  • I was given MRI's in both the US and while overseas in the UAE, all of them showed nothing. I thought that stroke would be ruled out that way? That is the extremely condensed version of my medical woes while I was in the military, that is the main reason that I decided to get out. I have an appointment at a veterans hospital tomorrow so I'm hoping to find any other possible ideas that I can throw at them. My only idea was lyme because of places I've visited/lived and a mystery rash and other symptoms that seem to fit. So far I've hit a wall in trying to find medical professionalswho know about it and take seriously my concerns.
    Helena 12 Replies Flag this Response
  • The medical term for weakness on one side of the body only is Hemiparesis. I think if you google this term, many possible ways to 'get' this will also pop up. Muscle spasms or twitching and also pain are not uncommon in these conditions. It is differentiated from Hemiplegia, which is total paralysis on one side of the body. I'm very sorry for what you are going through. I wonder if you could have been exposed to something while on deployment that could be effecting this. Anyway, just thought I might be able to at least help with a term! All my best.
    Harmonium 322 Replies Flag this Response
  • Thank you. Looking up that term was helpful. The only thing that seems to be throwing people off is the inslusion of my face in all these symptoms. I asked if the problem could be in my back (I have quite a few back problems) but was told that it could not because it wouldn't affect my face. Is there a nerve that goes to all areas of one side of the body including the face? I have been reading and trying to desipher the medical jargon but havenot beenable to confirm anything that would affect a whole side.
    Helena 12 Replies Flag this Response
  • Can you tell me whether you've had any previous history of migraines or migraine syndrome? Also, what is your age and if female, have you been under birth control therapy at any point prior to the original incident? At first impression, your symptoms would suggest hemiplegic migraine. It's important to understand that this type of phenomenon would not necessarily produce symptoms that most persons associate with migraine headaches. I would, however, withhold this impression based upon the nature of your symptoms at present. With regard to imaging, realize that strokes arise in the form of thrombotic, embolic and hemorrhagic variations and certain techniques are used to best detect their individual presence. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • I do have a history of migraines. Usually consists of a black spot in the left peripheral and gets bigger until it almost blocks out that whole side. I lay in the dark for a day and try to sleep if possible. I have not had a migraine in quite a while and none that I could really associate with my symptoms. They are usually related to certain smells and I now know what to stay away from. I know that I brought that up as a possibility but it was ruled out (can't remember why). A problem with getting a diagnosis for me I think was the military care. There is a lack of effort and a lot of yes sirs and no sirs that made it difficult to get answers to questions that I had. Another thing is that none of my symptoms are ever all the way gone. This has been going on for 2 years now and I would think that if it was a migraine the symptoms would come and go, not stay steady?
    Helena 12 Replies Flag this Response
  • Also, what are the different techniques usedto check for stroke? I thought the contrast MRI was the one stop shop to ruling out most terrible things. At least that is what I previously was led to believe.
    Helena 12 Replies Flag this Response
  • My apologies, obviously not paying attention. Female, 27. 24 when it first started. Iwas not on birth control at the time.
    Helena 12 Replies Flag this Response
  • Okay, realize that a history of migraines increases the risk in some cases where hemiplegic variant migraine is suspect. I would need to know more specifically why they ruled it out. MRI, with and without contrast, most definitely does not represent a "one-stop-shop" diagnostic tool and in many cases, a vascular CT scan can be far more revealing. MRI is generally great at very fine discrimination between tissues and depending upon the specific contrast medium used, can tell us a lot in that regard. It is, however, less accurate and discriminate when seeking to identify anything within the occlusive realm. I would, however, caution you about seeking to determine whether your symptoms are the consequence of cerebrovascular incident, the likelihood based upon your symptoms somewhat less so because of the latent effects. In other words, it would represent an uncharacteristic pattern. Indeed, hemiplegic migraine rarely imposes persistent symptoms and its nature is more transient. What has been provided in the way of treatment and can you recall more specifically what diagnostic labs were performed, together with their outcomes? Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
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  • I will look through my record to see if it mentions why they decided that wasn't it and post again tomorrow. There have been no attempts at any sort of treatment. Part of my frustration has been the lack of effort. Again besides the basics of knowing that I've had an MRI, contrast MRI, spinal tap(told wverything within normal range), long 'listening' needles(can't remember what they are called, also noted that some muscles would not 'turn off'), and some sort of shock test was performed; I don't knowmuch else off top. From what I understand they were all normal. I will also look to see i there was anything specific noted in my chart from these tests. Not sure if that answers what you were asking exactly... I appreciate all of your help
    Helena 12 Replies Flag this Response
  • Okay, the test you're describing is an electromyelogram, or EMG, and I would like for you to post the actual results if you have them available. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • The only thing that is noted in my record- "EMG was entirely normal ruling out a peripheral motor and sensory nueropathy" There were only a couple things that were not within the ref range in testing my CSF- neutrophils 49.1(50-80), RDW-Cv 14.8(14.5), MCV 79(82-100), hematocrit 34.9(38-47), hemoglobin 11.9(12-16), urea nitrogen 6(7-22), and albumin index 5.79(13.9-24.6). Myelin shows as not tested. MRI- with and without contrast. Technique- multi-sequence, multiplanar MR of brain, cervical and thoracic spine. Everything normal with exception of paranasal sinus inflamation(I've had a sinus infection everytime I get an mri) and issues with the c2-3, c4-5, c6-7, c7-t1, t1-2, t2-3, t3-4, t5-6, t6-7, t7-8, and t8-9 disc. I can give details on that if it seems relevant. T5-8 protrusion/extrusion(s) says the indent the spinal cord. Not sure if ay of that makes a difference or not. Thanks again for the help. Helena
    Helena 12 Replies Flag this Response
  • Upcoming neuro appt. Any suggestions for questions?
    Helena 12 Replies Flag this Response
  • I am not a doctor. I hope Dr. Cottle comes back to this thread, but in the meantime,issues with the c2-3, c4-5, c6-7, c7-t1, t1-2, t2-3, t3-4, t5-6, t6-7, t7-8, and t8-9 disc. I can give details on that if it seems relevant. T5-8 protrusion/extrusion(s) says the indent the spinal cord.I would think this is incredibly relevant. Any additional info you could provide-- any test results, how you got the problems, how does the timing correlate with your symptoms, etc.-- would really help. It's possible your spinal issues are causing all of your symptoms.
    Harmonium 322 Replies Flag this Response
  • I'm hoping he/she comes back as well. I appreciate your help as well. My back pain started after I had my son in 02. I had a severe reaction(does not neccesarily have to do with discdegenerative bone problems) to the epidural. I followed up for the back pain and after complaining for a few months was given an MRI which showed bulged discs in the lower back. Years later I learned that it was progressing to my whole spine when I was given more MRI's for the whole left side issue. My back is/hasbeen constant pain to me so I'm not sure how it would relate. I also don't see my back affecting nerves in my face. Not sure what to do and this is all so frustrating. Without a 'diagnosis' of an actual ailment, the military is not very helpful in treating ongoing symptoms. Hopefully that answered some of it and thanks again for any ideas.
    Helena 12 Replies Flag this Response
  • Yes, thank you for that info, it does help. Please be aware, however, that I am not a doc. The trigeminal nerve exits the spine at C5. A bulging or compressed disk at this level could possibly produce what's called trigeminal neuralgia-- what could be the problem with your face. I haven't really heard much of just one-sided problems associated with bulging disks, but it is true that a protruding disk can compromise nerve functionality. I can see where if your disks had increased pressure on only one side that the resulting nerve problems would also be unilateral. If you have that many disks that are damaged, it stands to reason you would have numbness, tingling, pain, weakness, etc, associated with the disk damage. I've also heard of many situations where the epidural given causes many issues with the spinal column and associated nerves. There is quite a bit of info on such conditions if you were to google it, though I can't vouch for how credible that info might be.As for your upcoming neuro appointment, I would ask as many questions as I could think of relating to your back issues. I would also request an MRI of the entire spine to see what damage is there and how it has progressed since your last one. I would also ask specific questions about trigeminal neuralgia. Additionally, I would ask about the condition Dr. Cottle was referring to--as many questions as you can think of. Go in with a list of questions written down so that you don't forget. Many times there is not much time with the doctor, so be prepared. You might even make a copy of your list for the doctor to keep and refer back to. As for the Raynaud's-- I have it too-- it is my understanding that either Rheumatologist or Hematologist are the experts in this. Sometimes you have to go to several types of specialists to gain a complete picture of the symptoms which ail you. Hope that helps! Dr. Cottle should see this if you keep bumping the post up to the top of the page and I believe he will come back to it--he usually does follow up when he has posted. I'm sorry you are frustrated and even more sorry the military is not giving you adequate care (really makes me mad!).....but you will find an answer to this! It can really help your overall quality of life to keep your chin up and focus on the things you can control--like keeping a positive attitude! I know it's difficult, but will help.
    Harmonium 322 Replies Flag this Response
  • Thank you so much. I will look that up and add it to my list of things to "throw" at the neurologist tomorrow. Any other last minute advice? Appointment is in the morning.
    Helena 12 Replies Flag this Response
  • Okay, it's my opinion that the radiologist's report about such a broad range of involvement throughout the cervical and thoracic vertebrae would merely represent anectodal findings. I would need to know the specifics. Furthermore, I would not be of the impression that these findings represent the causal factor to your symptoms. Please follow up with a post to describe your neurology visit and what tests were either performed or scheduled. With regard to your labs, values such as the albumin measured in CSF would be less than reference value due to effects of the blood-brain barrier. The remainder of the lab values are, for the most part, unremarkable. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
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