Discussions By Condition: I cannot get a diagnosis.

MS or what?

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: cbalcomgo
  • November 26, 2007
  • 09:08 PM

Okay, I'm going crazy! I can't seem to get a diagnosis for my condition. My symptoms include fatigue, body aches(flu like symptoms), weakness which causes uncoordination or balance, tightening, numbness, paresthesia, tremors, difficulty finding words, attention/memory problems, depression, bladder problems, and sexual dysfunction.
There are probaly others but overall I feel miserable and I'm 28. I was sent to a neurosurgeon and he said that there is nothing he could do surgically but said definitely followup with your neurologist regarding diseases. My other primary care doc said he believed I had MS and the neurologist said he found no abnormality's. However, when I told him what the neuro surgeon said he quickly came back and said o yes there is something and I think we should do a spinal tap. I felt very pushed off from this guy that did not seem to care. I don't know what to do primary care doc said if it is MS then it would def show up in spinal tap. The only thing that is ? is no plaques in the brain. My brain Mri looked good. The MRI cervical spine with and without contrast says, subtle changes of contusion or inflamation cannot be excluded, please correlate for myelitis. Also, it showed paraspinal margin @ c7-t1 may represent vessel artifact or post-traumatic change. The thoracic spine shows mild disk buldging at several levels. Lower back- buldging L4-5 with small central protusion associated with mild to moderate effacement of neural foramen bilaterally, abutement with mild mass effect at L4 nerve root, mild narrowing of spinal canal with psterior element hypertrophy. more buldging in L1,2,3,4, and 5-s1. Spasm. Hemangioamas about 4 from neck down. Prominece of extrarenal pelvis bilaterally.
Sry if this went on but i wanted the most info that I could about whats going on. Please anyone with advice is greatly accepted! Thankyou

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21 Replies:

  • I too am having the same problems as you and have had normal MRI's. I seem to have the same symptoms as you and have been told by a few doc's that it is possible MS, but no diagnosis because of absence of brain or cervical lesions. Have you ever had a cervical spine MRI or an Visual Evoked Potential test? If not, I would highly advise it. In my case, I have had an abnormal Evoked Potential which is common with people with MS and I have had a blood test that checks for Anti Myelin antibodies which was positive. The titers for this test should be negative and I had 3 positive titers. I refuse to give up despite what the doc's I have seen have said. I know that you can have MS and have a clean MRI. 5% of people with MS have clean MRI's with the lesions lurking in hidden places unseen on an MRI. I am 27 and these symptoms started after the birth of my daughter in July of 04. My grandmother has secondary progressive MS and my aunt has Relapse Remitting MS. I feel for you and would like to know if any of this helps you at all. Let me know. pietiangel
    Anonymous 42789 Replies
    • November 28, 2007
    • 03:58 PM
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  • I too am having the same problems as you and have had normal MRI's. I seem to have the same symptoms as you and have been told by a few doc's that it is possible MS, but no diagnosis because of absence of brain or cervical lesions. Have you ever had a cervical spine MRI or an Visual Evoked Potential test? If not, I would highly advise it. In my case, I have had an abnormal Evoked Potential which is common with people with MS and I have had a blood test that checks for Anti Myelin antibodies which was positive. The titers for this test should be negative and I had 3 positive titers. I refuse to give up despite what the doc's I have seen have said. I know that you can have MS and have a clean MRI. 5% of people with MS have clean MRI's with the lesions lurking in hidden places unseen on an MRI. I am 27 and these symptoms started after the birth of my daughter in July of 04. My grandmother has secondary progressive MS and my aunt has Relapse Remitting MS. I feel for you and would like to know if any of this helps you at all. Let me know. pietiangel May I ask what your Evoked Potential results were? My doc's favorite "choice" for me is MS also. A dif. dr. said my Evoked test was Normal, but I'm not sure now. Also, I haven't heard of the anti - myelin antibodies test. That's interesting. I'm getting my C-spine MRI results back tomorrow. Brain MRI was clean. Our issues/symptoms are almost identical.
    sarahl1976 19 Replies
    • November 28, 2007
    • 10:52 PM
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  • you know I haven't heard of a evoked eye test. It sounds interesting. I feel terrible for you. Man this is horrible to wake on a daily basis and feel this way and not have a clear answer. The doc did give me some pain med to help with the condition, which seems to be helping. However, I don't like taking more and more pills:( . Anyway, let me know what they find out I'm curious!
    cbalcomgo 38 Replies
    • November 29, 2007
    • 01:53 AM
    • 0
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  • May want to check out www.lymenet.org Lyme is a "great imitator" which can seem like many other diseaes.My continiung education makes me really feel that MS, RA, ALS, CFS, FM are in many cases actually lyme. Please do not trust your regular medical doc on lyme and appropriate testing.
    Anonymous 42789 Replies
    • November 29, 2007
    • 03:34 AM
    • 0
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  • Fatigue can often be one of the worst symptoms in arthritis. Try reading about ankylosing spondylitis. You should also have your thyroid checked (probably done already) and ask for the results. What doctors say is normal is not always normal. Many people have multiple symptoms long before their thyriod levels reach the outter limit. Kiera
    Anonymous 42789 Replies
    • November 29, 2007
    • 07:37 AM
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  • Try looking up arachnoiditis. Especially those who have ongoing back problems/surgeries and/or epidurals for childbirth or any other reason or have had menengitis. An excellent site is COFWA(circle of friends with arachnoiditis). Many Drs will not even have heard of this or claim it is very rare. Not as rare as they claim. I felt I was going crazy with pain & the symptoms previous posters have mentioned, until I found this site. I too have had MRI & EMG that came back clear. Mine is from trauma to spine only which is least likely way to get it. There is no definitive test. It is diagnosed by the amount of symptoms. I have most of them & had been dismissed for years by my Dr. They can also tell by an MRI with contrast but they need to be looking for it, which most radiologists aren't. Hope this helps.
    Anonymous 42789 Replies
    • November 30, 2007
    • 00:03 AM
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  • Not sure about the MRI findings but without them I would otherwise suggest looking into Hashimoto's EncephalopathyBest wishes. Sorry about your symptoms.
    Anonymous 42789 Replies
    • November 30, 2007
    • 05:53 AM
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  • Not sure about the MRI findings but without them I would otherwise suggest looking into Hashimoto's Encephalopathy Best wishes. Sorry about your symptoms.The neuro surgeon I saw, wants me to check with my doc about myelitis. One doctor told me don't worry about having the spinal tap, but he believed it was MS. I see the neurologist at the end of this month again. So I guess I will go from there. Thanks for the feed back
    cbalcomgo 38 Replies
    • December 2, 2007
    • 09:27 PM
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  • Fatigue can often be one of the worst symptoms in arthritis. Try reading about ankylosing spondylitis. You should also have your thyroid checked (probably done already) and ask for the results. What doctors say is normal is not always normal. Many people have multiple symptoms long before their thyriod levels reach the outter limit. KieraThe doc mentioned something about spondylitis, but he did not get into great detail. Thyroid have had checked several times coming back fantastic.
    cbalcomgo 38 Replies
    • December 2, 2007
    • 09:31 PM
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  • May be way off base here, but thought I would share a story. I used to work with a Veterinarian whose husband was a physician. She experienced similar symptoms, that seemed neurological- she shuffled her feet when she walked, sometimes she would be giving an exam and just fall over among other things. She was able to see several drs at the top of thier field. When one gave her an MS diagnosis, she was referred to an MS specialist who told her he didn't think it was MS. Long story short, she broke her hip withouth realizing it and drs were able to figure out she had vitamin d deficiancy ricketts. She is fine now.Good luck.;)
    Alynn5683 2 Replies
    • December 3, 2007
    • 08:14 PM
    • 0
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  • Im a 28 year old male. Same as you. I have exactly the same symptoms as you. I wake up everyday feeling off balance, spacey, weak, left shoulder pain, numbness in my left hand, numbness on my left cheek near my eye, left eye feels "funny" sometimes, i get headaches, and i get anxiety. Some days I feel ok but mostly not. My regular doc mentioned MS to me and sent me to a neurologist. I had an MRI with and without contrast of the brain which came back fine. I had a cervical spine MRI which came back fine with the exception of a small nodule on my thyriod which Im told is nothing to worry about. Ive had my blood work done three times in the last year, all coming back fine. I feel like Ive been progressively getting worse over the past year with no explaination as to whats wrong with me. I have GERD so Im on 40 mg of Nexium. I was given 30 mg of Paxil a few years back for my anxiety, which I am still taking. My heart skipped beats sometimes so my Cardiologist put me on a beta blocker, Metoprolol 25mg. I just got back from my Neuro Doc and he prescribed me Xanax 0.5 mg because he seems to think the numbness in my face and the pains Im getting is from some sort of chemical imbalance because both MRI's came back fine and he cant see anything else. I hate medication, I dont wanna be drugged up all the time. I miss who I used to be. I really dont have any advice for you but I did want you to know your not alone. Take care.
    satobsat79 2 Replies
    • December 4, 2007
    • 09:38 PM
    • 0
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  • I don't know if this will end up helping anyone, but it might be something worth looking into if you are haivng a negative MS work-up, since most neurologists and even MS specialists have never heard of it. I have something called Hashimoto's Encephalopathy, which took me almost a decade to get diagnosed. It can look like MS, spastic paraparesis, stroke, migraines, chronic fatigue syndrome, Lupus, ataxia, etc etc... It can present in a variety of ways. It is a rare complication of a common disease- autoimmune thyroiditis. My main symptoms were fatigue, headaches, balance problems, and mild neuro symptoms that came and went.HE can go undiagnosed for decades, which is a shame, as it responds well to steroids if caught early. It goes undiganosed primarily for 3 reasons: 1) it is a new disease and doctors do not know about it yet2) the encephalopathy can precede the thyroid failure by decades and so most patients who have in have normal thyroid hormone levels3) because of 1 and 2 above, your doctor will likely not order the tests that can help diagnose it: thyroid antibodies (typically these are not drawn unless your hormones are abnormal first but in HE you can have normal hormone levels)Sorry to bring HE up again, it's just that I looked at my previous response and it seemed kind of vague. I have no idea if this applies to anyone here but just wanted to share my experience in case it helps.Best Wishes to everyone who is undiagnosed. I hope you get a correct answer soon. I hated being in limboland, because doctors start looking at you with suspicion when your labs and studies come back negative and this can fill you with self doubt. Stick to your guns until you get an answer.
    Anonymous 42789 Replies
    • December 4, 2007
    • 10:45 PM
    • 0
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  • Hey ELKE. I just read your comment on HE. Just wanted to say thanks for giving your opinion on things. I will definitely mention it to my doctor next time I see him. Im in limboland and I hate it. I get the brush offs as having only anxiety but I know its more. I know my body. I feel it. Whether its something serious or not Ive been dealing with things too long not to know what it is.Thanx
    satobsat79 2 Replies
    • December 4, 2007
    • 11:17 PM
    • 0
    Flag this Response
  • May be way off base here, but thought I would share a story. I used to work with a Veterinarian whose husband was a physician. She experienced similar symptoms, that seemed neurological- she shuffled her feet when she walked, sometimes she would be giving an exam and just fall over among other things. She was able to see several drs at the top of thier field. When one gave her an MS diagnosis, she was referred to an MS specialist who told her he didn't think it was MS. Long story short, she broke her hip withouth realizing it and drs were able to figure out she had vitamin d deficiancy ricketts. She is fine now.Good luck.;)Thanks for sharing that with me, docs did some blood work cause they thought that could have been a good possibility but it came back fine!
    cbalcomgo 38 Replies
    • December 5, 2007
    • 02:06 PM
    • 0
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  • Im a 28 year old male. Same as you. I have exactly the same symptoms as you. I wake up everyday feeling off balance, spacey, weak, left shoulder pain, numbness in my left hand, numbness on my left cheek near my eye, left eye feels "funny" sometimes, i get headaches, and i get anxiety. Some days I feel ok but mostly not. My regular doc mentioned MS to me and sent me to a neurologist. I had an MRI with and without contrast of the brain which came back fine. I had a cervical spine MRI which came back fine with the exception of a small nodule on my thyriod which Im told is nothing to worry about. Ive had my blood work done three times in the last year, all coming back fine. I feel like Ive been progressively getting worse over the past year with no explaination as to whats wrong with me. I have GERD so Im on 40 mg of Nexium. I was given 30 mg of Paxil a few years back for my anxiety, which I am still taking. My heart skipped beats sometimes so my Cardiologist put me on a beta blocker, Metoprolol 25mg. I just got back from my Neuro Doc and he prescribed me Xanax 0.5 mg because he seems to think the numbness in my face and the pains Im getting is from some sort of chemical imbalance because both MRI's came back fine and he cant see anything else. I hate medication, I dont wanna be drugged up all the time. I miss who I used to be. I really dont have any advice for you but I did want you to know your not alone. Take care.Boy, I do feel for u! I appreciate that u shared that with me. U should let docs know how u feel about the meds. That is all they have done to me is give one med after the next and I'm tired. I have new symptoms devolping and I don't know what is going on but I have been sick with nausea and vomiting with tremendous body aches for 11 days now. Also stomach feels very bloated or something to that nature. Once again sry about your situation but don't let docs just blow u off with it being psychosomatic symptoms because that is what they did with me and now realize there is a serious prob physically.
    cbalcomgo 38 Replies
    • December 5, 2007
    • 02:11 PM
    • 0
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  • I don't know if this will end up helping anyone, but it might be something worth looking into if you are haivng a negative MS work-up, since most neurologists and even MS specialists have never heard of it. I have something called Hashimoto's Encephalopathy, which took me almost a decade to get diagnosed. It can look like MS, spastic paraparesis, stroke, migraines, chronic fatigue syndrome, Lupus, ataxia, etc etc... It can present in a variety of ways. It is a rare complication of a common disease- autoimmune thyroiditis. My main symptoms were fatigue, headaches, balance problems, and mild neuro symptoms that came and went.HE can go undiagnosed for decades, which is a shame, as it responds well to steroids if caught early. It goes undiganosed primarily for 3 reasons: 1) it is a new disease and doctors do not know about it yet2) the encephalopathy can precede the thyroid failure by decades and so most patients who have in have normal thyroid hormone levels3) because of 1 and 2 above, your doctor will likely not order the tests that can help diagnose it: thyroid antibodies (typically these are not drawn unless your hormones are abnormal first but in HE you can have normal hormone levels)Sorry to bring HE up again, it's just that I looked at my previous response and it seemed kind of vague. I have no idea if this applies to anyone here but just wanted to share my experience in case it helps.Best Wishes to everyone who is undiagnosed. I hope you get a correct answer soon. I hated being in limboland, because doctors start looking at you with suspicion when your labs and studies come back negative and this can fill you with self doubt. Stick to your guns until you get an answer.My thyroid test always comes back normal but my testosterone bounces around a lot. Could this be the same thing?
    cbalcomgo 38 Replies
    • December 5, 2007
    • 02:15 PM
    • 0
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  • Consider Lyme Disease... tests are terrible for it so you need to see a doc that the patient community recognizes has a clue. Symptoms are the same as MS (some even have brain lesions) but can be treated. Go to http://www.lymenet.org discussion group and ask away!MS is a very common misdiagnosis for Lyme.
    Anonymous 42789 Replies
    • December 7, 2007
    • 01:28 AM
    • 0
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  • I don't know if you checked out Adhesive Aracnoiditis I previously mentioned. It may be a long shot but here is some info from the site I recommended.You need not have all symptoms but if you have many of them it is worth looking into. Symptoms: Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunction Increased sweating Difficulty thinking clearly/Depression Heat intolerance Dry eyes/mouth Weight gain Heartburn/indigestion Difficulty in swallowing Headaches skin rashesOther less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).Note: in a survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with Multiple Sclerosis, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.
    Anonymous 42789 Replies
    • December 7, 2007
    • 06:11 AM
    • 0
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  • I don't know if you checked out Adhesive Aracnoiditis I previously mentioned. It may be a long shot but here is some info from the site I recommended.You need not have all symptoms but if you have many of them it is worth looking into. Symptoms:Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunctionIncreased sweating Difficulty thinking clearly/Depression Heat intoleranceDry eyes/mouth Weight gain Heartburn/indigestion Difficulty in swallowing Headaches skin rashes Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication). Note: in a survey, a number of respondents had a diagnosis of an autoimmune disorder such as Lupus, Sjogren’s, Rheumatoid arthritis. There appears to be a possible link between AA and autoimmune type problems. Out of 317 survey respondents, 27 had thyroid disorders, all except one having previously undergone myelography. As myelogram dyes contain iodine, there may be a significant link between the myelogram and subsequent thyroid disease; this is currently being investigated. There are also a number of arachnoiditis patients who have also been diagnosed with Multiple Sclerosis, as well as several more who have undergone investigation for MS. Those who have a diagnosis of fibromyalgia in addition to arachnoiditis are probably suffering from the condition as a secondary feature of the underlying arachnoiditis; fibromyalgic type symptoms of diffuse muscle tenderness and fatigue are common in arachnoiditis patients.I mentioned this achronitis to the doc and they said maybe but that is what I have been getting on everything. So basically, I have neurologist apt coming up here and they will do a spinal tap. Neuro surgeon said def not fibromyalgia! It is amazing the symptoms that may be related to so many differant things or similar things. Thanks
    cbalcomgo 38 Replies
    • December 15, 2007
    • 08:42 PM
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  • Before having a spinal tap you might ask someone else to read your spinal MRI with contrast. That is usually how it is diagnosed. Reason being, anything invasive into spinal canal MAY worsen symptoms or in fact has been known to cause Arachnoiditis. (women have gotten this from epidurals at childbirth--mine was from trauma to the spine only) Don't mean to scare you but they many times miss Arachnoiditis when looking at MRI if not looking specifically for it. I did not understand the diagnosis of you MRI. It may have been a fancy way to say Arachnoiditis. It is not as rare as many Drs would have you believe. A great site to visit for more info is COFWA. Just enter that in a search engine & you will find CIrcle of Friends with Arachnoiditis. They have excellent articles. Especially one written by Dr Sarah Smith who has this herself. You can click on "About Arachnoidits" or "more about arachnoidits" . I printed the articles out for my Dr. I believe there is also an article by Dr Burton who shows examples of what to look for on an MRI (with contrast). Hope this helps.
    Anonymous 42789 Replies
    • December 16, 2007
    • 03:59 PM
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