Discussions By Condition: I cannot get a diagnosis.

Tremors and numbness doctor can't find a reason, please help

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Gaia314
  • April 24, 2009
  • 10:01 AM


Hi, I’m a 44y/o woman.

In October 08 I started having pressure at the lower left side of my head, just to the left of the spine. I also was getting intermittent tremors and disorientation.
In November 08 I had a few near syncope episodes and continuing severe tremors, feelings of throat closing and started having difficulty finding the words I wanted to say or forgetting what I was saying/doing. This was also accompanied by extreme fatigue.

Most of these symptoms have improved or resolved however in February 09 I developed paresthesias in the left side of my face/tongue/throat and also left hand and both feet which has been continuous but does vary in intensity.

I’ve had numerous MRIs, CT scans, X-rays, EEGs, Lumbar puncture and blood work.

To date most tests have come back normal except for the following:

Possible 6mm lesion in the left thalamus, slight abnormality in brain: non enhancing T2 area possibly due to migraine or less likely demyelination, slight disc bulges at C5-C7 not showing as pressing on nerves.
LP showed “o-bands present” and “rare lymphocytes noted”.

Also a year ago I had unexplained chest pressure/discomfort. I was tested for heart problems with none found. Three years ago I had extreme pain and weakness in my left arm that lasted about a month and the doctors were never able to find a reason for that either. Could these prior symptoms be related to what is happening now?

The neuro is at a loss and is planning on sending me to hematology/oncology.

Any idea what could be causing these things? I’d really appreciate any input you may have as the paresthesia has gone from numbness/tingling to sometimes painful.


Thank you,
Gaia

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10 Replies:

  • Thank you Blaze for your reply, it certainly gives a person something to think about.I doubt very much that the world will agree to give up its cell phones or wifi towers. Does anyone have any clinical idea what could be causing my symptoms? I'd really appreciate any imput. Gaia
    Gaia314 6 Replies Flag this Response
  • Well, it appears that your doctors are referring you to hematology/oncology seeking to determine the presence of a paraneoplastic process, or cancer, but I have to tell you that I would be surprised indeed if the tests return positive. Please tell me more about the "tremors," particularly the exact nature of the symptom. Are the tremors very fine in nature such as trembling sensations, or are they more coarse and involve large muscle groups? Has there been any change in vision or voice, difficulty swallowing or choking epsisodes, clumsiness or tripping over objects that are low to the floor? The sensation of your throat closing is known as Globus Hystericus and results from vagus nerve stimulation, which can also cause heart palpitations in some persons. It is extremely common among individuals with panic disorder. The chest pain with no underlying pathology could also suggest DaCosta's syndrome, a type of chest wall pain, somtimes accompanied by referred pain to the arm that is often mistaken for symptoms associated with cardiac ischemia or heart attack, again very common in persons with panic disorder or under traumatic stress. Since you've had the parasthesia for some period of time now, is there any change in muscle tone or density? In other words does that side of your body appear different in tone or size? The oligoclonal bands in the LP can arise for a number of reasons and the term "rare" in this instance would indicate sparse, not bizarre. I would ask whether a sleep-deprived EEG has been performed as well. Also, if other lab work was performed, please post the results if you feel comfortable in doing so. Please realize, however, that even though the forum is anonymous, you would be in essence forfeiting certain patient rights and protections under federal privacy laws. I can help provide better direction once some questions have been answered. Best regards, J Cottle, MD
    JCottleMD 580 Replies Flag this Response
  • Thank you Dr. Cottle for your reply. My tremors seem to vary in intensity. Sometimes buzzing (especially if I wake up early and try to go back to sleep) to more violent shaking where it is quite noticeable and causes difficulty with doing simple tasks. The tremors seem to be mostly in my arms/hands but I find that walking down a set of stairs causes my legs to shake and feel like they are going to give out. I also get more tremors when I get tired, even getting ready for work in the morning causes this. When I shower, I often need to rest until the tremors ease up. I have not had problems tripping but do get spasms in my feet, especially the left, that is causing some walking difficulties. I have had intermittent blurry vision in my left eye and on two occasions was getting double vision for a few hours each and was evaluated by an ophthalmologist. He said that I had dry eyes and gave me drops which I’ve tried but still get the blurriness. I also have been getting some pain in my left eye which I did not have when I saw him. He did give me a three month follow up appt. so if the pain is still there I will ask him about it. I had an EEG done (not sleep deprived) which showed some abnormality in the temporal areas but a follow up 48 hour EEG showed no abnormality present. I do tend to have trouble swallowing but only when my throat is feeling numb. Then it feels like my muscles in my throat forget how to work. Also, I did see a psychiatrist who specializes in physical symptoms of stress/anxiety to see if this was all caused by stress. She did not believe that stress/anxiety was causing my symptoms and did not recommend that I have any follow up or medications.My neurologist did prescribe Ativan .05mg. to see if the tremors were anxiety related but took me off of it again when it didn’t help. Thank you again for your input. Gaia
    Gaia314 6 Replies Flag this Response
  • Forgot to add, I do have some left sided weakness. Especially when the numbness is feeling more intense or when the muscles in my hand tighten up. Gaia
    Gaia314 6 Replies Flag this Response
  • Is there any chance of this being some form of cancer? What kind of cancer could be causing tremors and one sided numbness? Any input is appreciated. Gaia
    Gaia314 6 Replies Flag this Response
  • Hello, First of all, I wanted to extend my best wishes to you and I'm so sorry for what you are going through. I've been through the frustration of being tested and not knowing what the answers are and I know how infuriating it can be some times. You start to feel like you hope a test shows something, not because you WANT a positive but because you want validation for your symptoms and what you are going through without being told it's in your head! Some of your symptoms and story sounds so familiar to me. Have you ever read about Multiple Sclerosis? I have MS and it can cause many, if not all, of your symptoms and can also cause oligoclonal bands to be present in the spinal fluid as an indicator of the demyelination process. It can be difficult to diagnose and I'm sure there are other things that can cause your symptoms, too, so I certainly don't mean to point you in a direction that doesn't fit. Did the doctor discuss what he thought the "lesion" in the thalamus could be? Is that the reason he is considering hematology/oncology, or is there another reason? I wasn't sure from your description of tests and symptoms why hematology may be involved or oncology for that matter. I know how difficult it can be to find a specialist that fits with what you need, especially in the neurology field for some reason. I have been to 5 local neurologists who are not capable to be receptionists let alone doctors doing patient care so I am forced to drive 3-5 hours for decent neurology care. If you aren't happy with the answers you are getting regarding the lesion and spinal tap results don't hesitate to try another neurologist. It can be difficult to start over but finding the right fit and someone who is willing to keep fighting for the answers is very important when going through something like this. Good luck to you! I am going through testing all over again now that I've developed numerous rheumatology and/or autoimmune symptoms that cannot be blamed on the MS so it's like deja vu. It can be so tiring and frustrating not having answers! Sara
    SarafinaRN 1 Replies Flag this Response
  • Sara, Thank you for taking the time to reply. My neurologist went from "not even looking for MS" to "maybe MS" to "no chance of this being MS". She told my husband at the last visit that she was 100% sure that this can not be MS and that I have no symptoms of it. She is sending me to hematology/oncology for, as she put it, a fishing expedition. She said that the o-bands may signify monoclonal gammopathy, which may signify a form of cancer in my blood. I would think that my blood tests would have shown something if it was cancer but all my blood work has come back normal. I also keep coming back to the thought of what kind of cancer could be causing left sided numbness. I would think if numbness was a symptom of cancer, it would make my whole body numb, not just one side. Frustrating... Thank you again for taking the time to reply. If the hematologist can't find anything, I will take your advice and look for another neuro. Gaia
    Gaia314 6 Replies Flag this Response
  • Saw the Hematologist/Oncologist and I do indeed have MGUS however he does not believe that my symptoms are related. He has suggested that this may be MS after all. He was unable to answer the following question and I am wondering if anyone here can answer it... OGB was found in my spinal fluid but the report only suggests checking for MGUS. Are the OGB different for MGUS than they are for MS? Or are they the same and suggestive of both? Thank you for any input. Gaia
    Gaia314 6 Replies Flag this Response
  • Has anyone thought about celiac disease? They often miss this diagnosis. Try this site from the National Institute of Health: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1263 Replies Flag this Response
  • Hi, I’m a 44y/o woman. In October 08 I started having pressure at the lower left side of my head, just to the left of the spine. I also was getting intermittent tremors and disorientation.In November 08 I had a few near syncope episodes and continuing severe tremors, feelings of throat closing and started having difficulty finding the words I wanted to say or forgetting what I was saying/doing. This was also accompanied by extreme fatigue. Most of these symptoms have improved or resolved however in February 09 I developed paresthesias in the left side of my face/tongue/throat and also left hand and both feet which has been continuous but does vary in intensity. I’ve had numerous MRIs, CT scans, X-rays, EEGs, Lumbar puncture and blood work. To date most tests have come back normal except for the following: Possible 6mm lesion in the left thalamus, slight abnormality in brain: non enhancing T2 area possibly due to migraine or less likelydemyelination, slight disc bulges at C5-C7 not showing as pressing on nerves.LP showed “o-bands present” and “rare lymphocytes noted”. Also a year ago I had unexplained chest pressure/discomfort. I was tested for heart problems with none found. Three years ago I had extreme pain and weakness in my left arm that lasted about a month and the doctors were never able to find a reason for that either. Could these prior symptoms be related to what is happening now? The neuro is at a loss and is planning on sending me to hematology/oncology. Any idea what could be causing these things? I’d really appreciate any input you may have as the paresthesia has gone from numbness/tingling to sometimes painful. Thank you,Gaia Gaia, my husband is 38 years old and his symptoms started about 2 years ago. He is weak, tired, tremors, chest pain and massive headaches. He is diabetic and has high blood pressure. My husband has actually passed out in the doctors office and in our front yard do to these symptoms. He was in a hospital for three days and had blood work done, ekg, ultrasounds, heart cath etc...everything came back normal as always. He has been seen by the neurologist, cardiologist and three other doctors. He can go for several months with out any difficulties or have flare ups several times over a couple of weeks. When he starts to have an episode he goes numb, starts trembling, short of breath, and tightness in his chest, dizziness til he passes out or just cant stand. When he has these spells he will be exhausted for two to three days just sleeping. We are both so frustrated and have high cost of medical bills with no explanation to what is happening. It is not associated with the high blood presssure nor the diabetes for all the testing. Please let me know if you find out any information that would be of help.
    Anonymous 42789 Replies Flag this Response
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