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    Old 10-28-2015, 07:10 PM   #1
    messymama
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    Please Help, Need Advice

    Hello! I am currently going through a possible MS diagnosis process and I am finding the whole thing overwhelming and confusing. It doesn't help that my doctor is not communicating very much (if at all, I can't get an actual person on the phone!). Anyways, I thought I would pose some questions here and see if I can get any advice from people who have been through this.

    In 2011 I was (in my opinion now) falsely diagnosed with a Horner's Syndrome. At a routine eye exam the doctor noticed problems with my right eye dilation and sent me to a neuro-opthamologist who did some testing, didn't find a brain tumor, concluded I must have been born with it and that was that. It never sat well with me but I was 25, two months from my wedding date, and I just took the diagnosis of no tumor as a relief and went on my way.

    2012 I first noticed numbness and tingling in my hand and feet. Went and was tested for diabetes and found that negative but was told that if I lost weight the symptoms would go away (possibly due to poor circulation).

    2013 Pregnant with first child

    2014 Numbness and Tingling more present and was once again told to lose weight

    2015 Lost 80lbs, still numb and tingling and the numbness has now progressed up my right arm in to my forearm. Its only on my right side. I have had episodes of shortness of breath, lightheaded and dizziness and was seen by a cardiologist and diagnosed with Bradycardia and Orthostatic Hypotension. My right hand locks up and I saw hand specialist who removed a cyst from the base of a finger joint but it continues to lock up. Now I am seeing a neurologist who thinks it could be MS. Here are my results so far.

    VER- Abnormal
    MRI- brain and cervical spine were clear. Thoracic Spine showed an "artifact" and I go in tomorrow for a chest x-ray. I have no idea what that could mean.
    MRA of my neck- I have no clue what those results are since my doctor doesn't answer
    EDIT: Wanted to include that at my initial appointment with the Neurologist they found "marked" weakness in my upper extremities.

    Blood work:
    Low total Cholesterol
    Low HDL
    Low Creatine Kinase
    Low AST
    Low B12 (187, from what I've read thats very low)
    Negative Lyme Disease
    Negative RA
    Negative MMA
    Negative ANCA
    AChR shows 7% inhibition (no clue what that means)

    A lot of other things were in the low or high spectrum but those are the only things that were flagged.

    Also, my thyroid level has been fluctuating so I was also sent to an Endocrinologist that has started me on a low dose of Synthyroid which I start tomorrow. I don't know if that is related.

    Absolutely any incite in to any of this would be VERY helpful, as I am at a loss. I have read some things that could indicate Myasthenia Gravis which scares me since I have a young child that is also showing signs of eyelid drooping (which I occasionally have, which was part of the original Horner's Syndrome diagnosis)

    Sorry for the novel. I'm just worried.

    Last edited by messymama; 10-28-2015 at 07:14 PM. Reason: added weakness in extrememites

     
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    Old 10-28-2015, 07:31 PM   #2
    MSJayhawk
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    Re: Please Help, Need Advice

    messymama,

    Welcome.

    Your low B12 falls into a deficiency which can mimic MS. Your blood test should have also measured your D levels as well as your Calcium and magnesium levels. Vitamin D deficiencies are another notable MS mimicry.

    Who read your MRI? Often a doctor with little or no experience with MS can miss the lesions in an MRI. Also degenerative and or other disc issues might be in play.

    Vision problems with MS would have a lesion noted and would or should have been observed by a neuro-ophthalmologist

    Do you have MS? It is impossible to know. Added to this, your thyroid levels are another MS mimicry.

    There are over 400 known MS mimicries. Your blood tests may need to be redone to include the other vitamins. Calcium deficiency can play a part in the neuro transmitters in your brain. D-Calcium-magnesium play a three way teamwork in muscle cell communication. A single deficiency can cause problems. You might work to bring your B12 to a mid normal level while watching for other deficiencies. The likelihood can be higher postpartum.

    As you are starting Synthyroid, I would encourage you to record your symptoms. My former pastor in California thought he had MS, but his was the thyroid and his "MS Symptoms" disappeared after he started Synthyroid and he now feels normal again. I cannot tell you that this will be your case.

    If you see an MS Specialist, a full blood test in advance as well as a period of time on Synthyroid will help your situation. You might even find that you lose weight with your thyroid levels in control or managed.

    There is no single test to say "MS". The diagnostic process requires the doctor to eliminate the 400 known mimicries. Once these have been identified or eliminated, then the data is weighed against the Revised McDonald Criteria. If you meet the criteria, then you could be diagnosed with MS.

    At this time, your B12 and Thyroid need to be your priority and to check your D levels. You might very well find that your symptoms have disappeared by then.

    I realize that this can be overwhelming and that many doctors have poor communication and interpersonal skills. We are here and would love to tell you not MS. As you move forward, please know that you are not alone and we will be here with you. Thank you for sharing
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    Old 10-28-2015, 08:12 PM   #3
    messymama
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    Re: Please Help, Need Advice

    Thank you so much for your response!

    My Vitamin D levels were checked and they are in the "normal range" but at the low end (33).

    All I know about the Visual Evoked Response Test is that there was "abnormal delayed response". I have not actually seen or spoken to my actual doctor, just talked to his nurse, since this all began.

    Could the "artifact" in my thoracic spine be a lesion? Would that show in the x-Ray they have scheduled tomorrow?

    Also, does the AChR antibody modulating 7% inhibition blood result point towards Myathensia Gravis since I don't think that should be present at all in my blood?

    It would be awesome if I could get ahold of my actual doctor during all of this to answer these questions but it's amazing to have nice people on the internet offer their input! This whole process has felt so isolating and lonely.

     
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    Old 10-28-2015, 08:34 PM   #4
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    Re: Please Help, Need Advice

    messymama,

    I was at the low end of normal vitamin D. My MS Specialist said that she wanted me in mid-normal. Now, the range is an average and being at the low end could mean symptoms presenting. I would certainly ask your GP about boosting your D levels. For me, my doctor has me supplement 1000 iu daily of D3. My D levels are mid-normal with supplementation. Our D levels fluctuate and get lower during the winter months and as we get older.

    An X-ray would not do anything for you regarding any lesions. I have t-spine lesions which were found with an MRI after a positive VEP. Now, a VEP is not able to identify what is causing a problem and it is not an MS test. Many MSers have positive VEPs, BUT not all MSers do. The VEP is a sensitive test and measure minute interference. If your eye has a problem, this could be why your response was as such. My last VEP was stopped after just looking with my right eye because the technician said it was quite obvious something was happening. The sent me for another MRI to include my t-spine and found the lesions there.

    As to your MG question, the reference range which you shared would fall into the negative range. Here is the reference range:

    Reference intervals for Modulating antibody is:

    Negative: 0-45% modulating

    Positive: 46% or greater modulating

    I hope this helps

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    Old 10-29-2015, 04:01 AM   #5
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    Re: Please Help, Need Advice

    Hi messymama,

    Quote:
    AChR shows 7% inhibition (no clue what that means)
    Quote:
    Also, does the AChR antibody modulating 7% inhibition blood result point towards Myathensia Gravis since I don't think that should be present at all in my blood?
    No,the AChR should not be in the blood and yes it points toward Myathensia Gravis. AChR is a blood test specifically for Myathensia Gravis (MG)

    There is another blood test, Anti-MuSK that is also specific for MG and one that your Dr. should order.

    MG can cause weakness as well as many other symptoms. Be wishes!

    Last edited by Snoopy61; 10-29-2015 at 04:05 AM.

     
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    Old 10-29-2015, 04:09 AM   #6
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    Re: Please Help, Need Advice

    Hi there. Sorry you are going through so much. It is scary when you know something is wrong, but dont know what.

    You asked "Could the "artifact" in my thoracic spine be a lesion? Would that show in the x-Ray they have scheduled tomorrow?" An artifact can be anything from a shadow to movement when you took a breath during the MRI. Thoracic lesions are extremely rare- but they do happen. 99% of lesions are in the Cspine and Lspine.

    Your blood work doesnt scream MS, but as Jayhawk stated, there are 400 mimicricies to MS- and just having low D can be the problem, it definately causes numbness and tingling. Also , a pinched nerve, which doesnt always show up in an MRI (better in a CT scan) can cause the same symptoms. The other problem is that not all lesions will show up in an MRI.....sometimes they have to be "big enough" to be seen, which can take 6 months. During the diagnostic phase, its important to have MRIs every 6 months. You also didnt mention, did you have them with contrast? If you did not, something could have been missed. As Jayhawk also said, if a MS Specialist didnt read the films, and your doctor relied on the radiologist, another potential miss could have occured. Not all radiologists are good at reading MS films.

    So many "what ifs" that its hard to say right now. You are not screaming MS, because there are many MS symptoms which are more common which you are not complaining of.....but MS is a very individual disease and no two cases present exactly alike. Meaning, anything is possible. The good news is if it is MS- its very livable and you can and will live a normal life....knowing what you are dealing with is half the battle.

    Question, when you were pregnant, how did you feel? Did the symptoms go away? When an MSer is pregnant, they are at their best. The hormones secreted protect mother and baby from the disease and pregnant women go into remission...once the baby is born, thats another story. Most women who give birth immediately go into a MS attack. Did things get weird immediately after birth? These are just random questions, but this trend tends to be across the board.

    Let us know how we can support you. I hope you get your answers soon! Ask about contrast and ask who read the reports...and then ask to get a referral to an MS specialist who can either rule out or dx MS.

    Best,
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    Old 10-29-2015, 06:49 AM   #7
    messymama
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    Re: Please Help, Need Advice

    Thank you SO so much everyone for your replies!

    To answer the question about pregnancy, yes I felt completely fine! It was a little less than 6 months postpartum that I felt like I was hit by a truck. The fatigue was unbearable but I just thought it was exhaustion from having a newborn. I should add that about 10 years ago was when I had my first round of extreme fatigue symptoms (which also coincides with the first time I had a small or "droopy" eye noticeable in pictures. It is only really noticeable in pictures, not if you were looking at me in person and this symptom seems to come and go but it is always present when I have the extreme fatigue). My exhaustion was so bad my mom pulled me out of my semester at college and had sleep studies done on me to check for narcolepsy. Nothing was found.

    I would say that fatigue, every day tasks being too much, extreme anxiety and mood swings, and the numbness and tingling on my ride side are my main symptoms. I was put on anxiety medication last year after what doctors said was an anxiety attack. A few weeks ago my anxiety and fatigue came back full force so I went to the doctor and asked for my dose to be increased since it didn't seem to be working. He noticed a hand tremor at that appointment and then sent me to a neurologist and things went from there.

    With the Myathensia Gravis, if it's not supposed to be in my body why does the test reference say <32% inhibition? That is what has me so confused. The AcHr binding and blocking tests just have numbers but it doesn't say "normal" or "high/low" or "negative" like the other tests. It just says numbers. And then the modulating result came back a few days after the first two and it says 7%. I'm so confused. If it is MG I have already contacted my daughters pediatrician since we noticed a drooping eyelid in her a few months ago, but thought nothing of it at first. Would MG show up anywhere else in my blood work? Could that explain the low CK?

    Also yes the MRI was done with contrast. I am not sure if my doctor has actually seen the images, as I have not heard from him, just hearing from the Imaging center whenever he is adding more tests.

    Last edited by messymama; 10-29-2015 at 06:54 AM.

     
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    Old 10-29-2015, 08:05 AM   #8
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    Re: Please Help, Need Advice

    I have had the blood test for MG. My report has different columns --- Test, Low, Normal, High, Reference range. The only columns that have anything in it on mine is "Normal" and Reference Range. Just about any blood test has a reference range --- this is the normal range of what a blood test should come up in. The Low, Normal, High columns shows what your actual results came up as.

    I don't think the whole report has been made available to you yet. Have patience it can take time.

    Last edited by Snoopy61; 10-29-2015 at 08:07 AM.

     
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    Old 10-29-2015, 01:03 PM   #9
    MSJayhawk
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    Re: Please Help, Need Advice

    messymama,

    I agree with Snoopy that you have not gotten the full report on MG and it is something your doctor needs to cover with you. I think if something was required immediately, you would already be under that care.

    Anxiety untreated or un-managed can also mimic MS including hand tremors. As you anxiety is not managed well by your current meds, you may already have identified the cause, but again, this is something the doctor should evaluate. MSers can have anxiety too, but anxiety can be a standalone malady. Anxiety can be lessened with activity such as exercise. As you also have fatigue, this may be reversed with B12 supplements as a deficiency of B12 can be responsible for this fatigue.

    I know that patience can be short and difficult, but you have appointments and you will get to an answer. MG, deficiencies, etc....these all need to be addressed and eliminated or managed. Even if you saw an MS Specialist today, there really is nothing magical other than getting a diagnosis quickly. There simply is no single test for MS nor is there a cure. Many of the difficulties you now have are mimicries or can be part of MS too.

    Postpartum can be a time when MS rears up. During your pregnancy your body produces a hormone called Estriol. This hormone has been studied and is under study as it appears to suppress MS Symptoms in women. After delivery estriol production ceases or tapers off and then symptoms usually strike. Additionally you are dealing with other hormones too that are in need of re-balancing due to your body changes. This can have lingering effects on you as well.

    Rather than simply upping your anti-anxiety meds, oral counseling may be a viable addition. Oral counseling, meds, or a combination of both are effective, but each patient is unique and a balance has to be determined. Having activities which redirect your worries into a beneficial direction helps and this is something which oral counseling may help you achieve.

    If you keep a symptom journal and track your symptoms, you may observe patterns. There may be times during the day that you need to "shut down" to rest. I have found this for me too. Being a mom is certainly more difficult, but finding a schedule that works for you is really important to protect your health. If you are not well, you cannot help others effectively.
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    Old 11-01-2015, 04:33 PM   #10
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    Re: Please Help, Need Advice

    Once again thank you everyone for getting back to me.

    So I went in for my chest x-ray on Thursday and the doctor at the imaging site immediately called my husband and I back. He was very nice and understanding (I told him I haven't actually heard from my doctor so I have no idea what is really going on). So he showed me the reason for the chest x-ray. On the MRI of my thoracic spine they found something behind my heart, in my pericardium it looks like. I'm not quite sure what to make of that. The doctor said he thought it might be a pericardial cyst but they wanted to do further imaging to get a better view of it since it was just an "incidental finding" on the MRI of my spine, so a CT scan with contrast is being ordered. In March I saw a cardiologist after almost collapsing after running a local race and I was diagnosed at that time as having bradycardia and orthostatic hypotension. An echocardiagram of my heart was done then and my pericardium was clear. So I don't know what that means, since pericardial cysts are congenial. But my cardiologist said that maybe it wasn't seem if its behind my heart. He doesn't know and he is now requesting those films and ordering tests of his own.

    Since the two growths were found on my thyroid a month ago, and now this one in my chest, I'm very scared that they are all related. I know this has nothing to do with MS but I guess I'm kind of just venting right now about the latest findings.

    As far as the MS goes, I don't have an explanation about what the abnormal and delayed response on my VEP test means but I do know they found a protruding disk in my cervical spine and it makes contact with my spinal cord, so I'm thinking maybe that and the combo of the low b12 and low vitamin D could attribute to the numbness and tingling, especially since the disk is pushing on the right side and all of my numbness and tingling is on my right side.

    Basically, I have no idea what any of this means, and I'm terrified. I'm trying to stay as positive as possible but my anxiety with all of this is out of control (all to the stress that my daughter turned 2 yesterday and I had to host a large family birthday party and I turn 30 in 3 days and am packing for a vacation that we planned and paid for a year ago). Whew. Its been a wild and crazy few weeks!

     
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    Old 11-02-2015, 07:07 AM   #11
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    Re: Please Help, Need Advice

    messymama,

    Let not your heart be troubled. MS would be much less of a worry. Thyroid concerns and your vitamin deficiencies and your protruding disc issues need to be addressed first. It looks like you have doctors attending to those issues now which is a blessing. You may need to advocate for the deficiencies to be supplemented.

    My younger sister was tested for MS when she started getting fatigue. Her doctor started with cardio checks and found a valve defect that she had had since a child and it did not present until later. Within 2 weeks she was in surgery to have it repaired. Your onset of symptoms could be a culmination of the various concerns you have. Work with your doctors to resolve these and then you can explore MS if symptoms persist. I think you will feel much better to deal with your "front burner" issues. MS is only chronic and would place it (if you have it) on the "back burner"

    Still going to support you here. You are not alone.
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    Old 11-02-2015, 07:16 AM   #12
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    Re: Please Help, Need Advice

    messymama,

    If you have not yet perused the other forums on this site, there is also a thyroid disorder forum under "Other" on the message boards. You may find some with thyroid experiences which are similar to yours. I want you to have access to the best information possible and others who are or have experienced it can bring you understanding and relief You can do a site search for your needs too.

    You are also always welcome here too; .
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