It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

  • MS? Yikes!

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 01-13-2016, 05:19 PM   #1
    Bellazae333
    Newbie
    (female)
     
    Bellazae333's Avatar
     
    Join Date: Jan 2016
    Posts: 5
    Bellazae333 HB User
    Question MS? Yikes!

    :-) Hi I'm trying to just figure out what kind of things to ask my neurologist as I've been in limbo for 5 months and literally about to lose my job as I have been on leave with really no answers and it took this long just to get into a neurologist. 3 Drs (including the ER) have stated that it sounds like I have MS but I'm just waiting until Monday to see the neuro to see what he says.

    I do however know that my B12 level was 240 and Vitsmin d 13. left side (entire) tingling/numbness/pain and weakness, dizziness, difficulty swallowing, exhaustion and intense pain in my shins,feet hands, ear and back and overall out of it feeling with low grade fevers off and on-is there anything that would distinguish the lack of those vitamins and MS?

    It literally started the day after being out at my daughters soccer tournament in 100 degree weather. I woke up spinning and have spun out of control since then. I can say that as a teenager I had to take muscle relaxers to sleep due to the pain in my back and again in my 20s. But it was episodes and it didn't last more than a couple of months at a time.

    I have read that the sun affects MS and wondered if my involvement in marching band may have anything to do with it? Also I noticed the burning in my feet about 3 years ago but thought it was because I worked on my feet 2 years prior and now had more of a sitting job? Also fluctuating blood pressure from high 163/109 to low 91/65 (norm for me is 121/78 )

    Sorry to post a loooong message. Just kind of frustrating that this is taking so long and now really putting a damper on my lifestyle and income. Thank you in advance!

    Last edited by Administrator; 01-13-2016 at 10:19 PM.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 01-13-2016, 11:15 PM   #2
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: MS? Yikes!

    Bellazae333,

    Welcome.

    The earliest history of MS was in the northern parts of Europe, hence the sunshine linkage, but it was believed to be a lack of sunshine. MS is found in Northern Asia, but is now found in tropical countries too.

    Your Vitamin D deficiency could likely be the sole cause of your current dilemma. About 15% of patients presenting with MS like symptoms have a deficiency of Vitamin D> Since your D is deficient, has your doctor started you supplementing? It can take 3 -6 months after normal levels are reached and maintained before D deficient symptoms start to reverse.

    Have you had an MRI? While an MRI IS NOT a specific test for MS, it can push your case to the neurological side of medicine. While MS does cause lesions, there are other maladies and problems which can also cause lesions. Also about 5% of MSers present initially without lesions.

    My blood pressure runs high when I have nerve pain. I do not know if your does the same. My family history is a low blood pressure, which to me is normal. 121/78 would be high for me.

    If you are waiting to see a neurologist, you should make sure you are seeing an MS Specialist rather than a general neurologist because your doctors have indicated MS as a possibility. It can take 3 - 6 months waiting to see an MS Specialist, While waiting, if possible, getting as much testing done in advance will save you time. Forward all your records to the neurologist to also speed things up.

    If you are supplementing with D already, another blood test might be needed to confirm your current levels. The D deficiency would certainly have to be ruled out because the symptoms can "muddy the waters" for your diagnosis.

    Your dealing with a hot day is not unlike MSers who have heat intolerance issues. I have had those temperature intolerant concerns since 2002. Mine came 20 years after my original diagnosis. Some patients develop the intolerance early. There is nothing set in stone. I also have a lower limit with troubles when temperature dip below 52 F (11.11 C). My upper limit depends on heat and humidity and can vary. When heat is an issue, my energy levels can be sapped in 5 - 10 minutes.

    Let not your heart be worried. You should not be long in limbo land. Swallowing issues for me are helped and alleviated with ice cold drinks. In the winter and spring burning feelings in my hands or feet are usually helped with a pair of gloves or an extra layer or two of socks. In the summer a cold soak helps my hands too.

    Heat and internal temperature increases can block neuron communication and our brain does not get the messages or they are delayed. Our body can also experience difficulty regulating our internal temperature (a problem for me).

    These symptoms can certainly point towards MS, but you need to eliminate all the MS mimicries. Then the doctor needs to compare your results with the Revised McDonald Criteria to see if you meet the criteria to be diagnosed with MS.

    IF IF IF you have MS, nothing you have done or not done is the cause of your MS. After 700 years, doctors still have no idea. Life with MS can take some adjusting, but you can do it. Thank you for sharing
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Reply With Quote
    The following user gives a hug of support to MSJayhawk:
    Bellazae333 (01-15-2016)
    Old 01-14-2016, 02:54 AM   #3
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,201
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: MS? Yikes!

    Hi there. You wrote "I have read that the sun affects MS and wondered if my involvement in marching band may have anything to do with it?". I am not sure exactly what you mean by this....if you mean that youre wondering if being in the Marching Band might have caused it, absolutely not....but if you mean that being in the Marching Band might lead to your symptoms, possibly. You also stated that being outside at your daughters soccer game is where it started.

    Heat sensitivity is something that many MSers deal with. I am one of them. If I spend more than a few minutes outside on a very hot day, I become disoriented, start having intense muscle spasms, get exhausted as if I have just run a marathon and absolutely need to hit a cold shower and a couch or bed for 8 hours to recover. One of my earliest symptoms, which I didnt know was a symptom at the time, was that I would get out of a hot shower, start to blow dry my waist length hair, and wind up on the floor of the bathroom crying, having no idea why I was crying, but I would be dripping with sweat- completely frustrated and feeling disoriented. My husband thought I was nuts....

    Later, I found out about heat sensitivity and with a thorough history run by my doctor, learned that I had had symptoms for about 5 years before I had a symptom which actually took me to the hospital and resulted in my dx.

    So, hearing that your problems started after being outside for hours on a hot day, doesnt surprise me. However, do not confuse this with the sun causing MS. Yes, there are theories about not having gotten enough vitamin D as a child causing MS. I debunked that one personally. I grew up on the beach. I spent my entire high school years as a life guard, and then continued to work outside for the next 5 years. I was exposed to so much vitamin D, my biggest fear is skin cancer. There was never a day that I didnt get hours of sunshine....and yet, I still have MS. I am living proof that MS can happen to anyone, for any reason.

    There is criteria, called the Revised McDonald Criteria, which doctors look for in order to give out a MS diagnosis. You can read up on it. It all starts with MRIs and other testing, looking for damage (scars) on the brain and spine, which are caused by MS attacks. The damage also causes symptoms which show up. If the symptoms and the damage are both present, you might meet the criteria, if not, its a wait and see game, because the damage sometimes takes longer than the symptoms to appear...

    Please see a MS specilalist. Not a regular Neurologist, as not all Neuros are trained in MS. Many only deal with strokes, migranes and other brain truama. MS specialists can both rule out and dx MS, and they wont leave you hanging...if you do not meet the criteria for MS, they will want to see you again in a year to repeat the tests, and if they are positive that this caused by something else, will almost always refer you to the proper specialist.

    I hope you feel better. Not knowing is a horrible place to be in, but hopefully you will get answers soon.

    Best,
    MSNik
    __________________
    RRMS- dx 05

     
    Reply With Quote
    Old 01-14-2016, 05:05 AM   #4
    Snoopy61
    Inactive
    (female)
     
    Join Date: Nov 2007
    Posts: 1,565
    Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
    Re: MS? Yikes!

    Hello Bellazae333,

    Quote:
    I'm just waiting until Monday to see the neuro to see what he says.
    That is a really good approach...waiting to see what the Neurologist has to say

    Other Drs. may tell a patient it "sounds" like MS but to know if it IS MS requires a Neurological evaluation/exam, testing and ruling out other possible causes for a patients symptoms.

    It's impossible to know if someone has MS based on symptoms alone. There are many other conditions, medication side effects and mental health problems that can all cause similar symptoms as MS. No symptom(s) is exclusive or unique to MS.

    Quote:
    I do however know that my B12 level was 240 and Vitsmin d 13.
    is there anything that would distinguish the lack of those vitamins and MS?
    No, in fact B-12 deficiencies as well as other deficiencies can cause symptoms that mimic or are similar to symptoms seen in MS. Vitamin D deficiencies have been linked to many conditions including MS.

    Blood work and what may be found is to check for other conditions. There is nothing found in blood work that will indicated MS.

    Best wishes on your upcoming Neurology appointment and I hope you receive answers soon.

     
    Reply With Quote
    Old 01-15-2016, 11:18 AM   #5
    Bellazae333
    Newbie
    (female)
     
    Bellazae333's Avatar
     
    Join Date: Jan 2016
    Posts: 5
    Bellazae333 HB User
    Re: MS? Yikes!

    Thank you so much for your response. Yes I am on 50k units of vitamin d once a week (just started this week) and 5k of b12. I just received a copy of my MRI results in anticipation of seeing the dr on Monday. Nothing mentions the word "lesions", there is discogenic degenerative changes in c3-t1 with mentioning of bulging and protrusions and stenosis yadayadayada. ? Wish I could read this stuff :-) however I just noticed that although I sat through an hour and a half MRI this says it was w/o contrast yet my Brain MRI states it was with? I have had two MRIs since Sept. My most recent on 12/24 with a new mention of bifrontal cortical sulci prominence/strophic change for age and prominent partially empty sella Turcica. Other than an arachnoid cyst (prominent retrocerebellar CSF structure with mild mass effect) found during my September MRI which a neurosurgeon said wouldn't cause my symptoms, I don't know what to make out of all this. I'm sure the neurologist will explain it all and perhaps some of this is what is causing my symptoms? I'm assuming I would see other verbiage that would outline ms right? Anyways, thank you again for your time and kindness.

     
    Reply With Quote
    Old 01-15-2016, 11:59 AM   #6
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: MS? Yikes!

    Bellazae333,

    Stenosis and disc issues can mimic MS. The large dose of D will give you a boost, but once you complete the prescription strength dosages, you will likely need a daily dosage. As you are just beginning the D supplements, you might need to allow yourself some time.

    With a lack of lesions or indication of lesions or demyelination, statistically you are in good shape. About 15% of patients have a D deficiency. It does not mean that you are without MS. That is, because 5% of MSers present initially with symptoms and no lesions, you might want to plan on some follow-up MRIs down the road. I think that after reaching your normal D levels that you will start to heal and recover from the deficiency. You might need a lifetime of supplementing, but fortunately it is inexpensive for Vitamin D3. If you are directed to take dosages in excess of 1000 iu per day, I would highly recommend you spreading the dosages out through the day. This would allow your body to most efficiently absorb and store the D. If you take a dosage at one time, you may not fully realize the benefits,

    I hope that your appointments go well. We are here for you still and I sincerely hope we can wave good bye as you exit limbo land as well as MS.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Reply With Quote
    Old 01-15-2016, 12:30 PM   #7
    Snoopy61
    Inactive
    (female)
     
    Join Date: Nov 2007
    Posts: 1,565
    Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
    Re: MS? Yikes!

    Quote:
    Originally Posted by Bellazae333 View Post
    there is discogenic degenerative changes in c3-t1 with mentioning of bulging and protrusions and stenosis yadayadayada. ?
    Those findings could account for many of your symptoms. Problems with the spine (mechanical back problems) --- bulging/herniated discs, stenosis (narrowing of the spine), protrusions, Degenerative Disc Disease (DDD) have the very real possibility of causing neurological symptoms. MS does not cause mechanical back problems such as those described above.

    In the MRI report there is an impression section which will give possible causes for findings but is not a diagnosis.

     
    Reply With Quote
    Old 01-18-2016, 07:43 PM   #8
    Bellazae333
    Newbie
    (female)
     
    Bellazae333's Avatar
     
    Join Date: Jan 2016
    Posts: 5
    Bellazae333 HB User
    Re: MS? Yikes!

    Hi, just wanted to update. Well, neuro says she doesn't think it's MS and is suspicious of possible Aorta issues? Have any of you heard or experienced any issue like this? I'm being scheduled for an angiogram. Kinda came out of left field since the other Drs were leaning towards MS.

     
    Reply With Quote
    Old 01-18-2016, 08:24 PM   #9
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: MS? Yikes!

    Bellazae333,

    Six years ago my younger sister started dealing with fatigue and other problems. She went to see a neurologist because I have MS. The neuro sent her to the cardiologist. The cardiologist arranged for her to go to the Cleveland Clinic because of a heart valve issue which started to show itself when she hit 35 yo. Six years have passed and she has fully recovered. I am glad you do not have MS. I certainly hope your cardio issues can be resolved without too much trouble.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Reply With Quote
    The following user gives a hug of support to MSJayhawk:
    Bellazae333 (01-19-2016)
    The Following User Says Thank You to MSJayhawk For This Useful Post:
    Bellazae333 (01-19-2016)
    Old 01-19-2016, 04:27 PM   #10
    Bellazae333
    Newbie
    (female)
     
    Bellazae333's Avatar
     
    Join Date: Jan 2016
    Posts: 5
    Bellazae333 HB User
    Re: MS? Yikes!

    Quote:
    Originally Posted by MSJayhawk View Post
    Bellazae333,

    Six years ago my younger sister started dealing with fatigue and other problems. She went to see a neurologist because I have MS. The neuro sent her to the cardiologist. The cardiologist arranged for her to go to the Cleveland Clinic because of a heart valve issue which started to show itself when she hit 35 yo. Six years have passed and she has fully recovered. I am glad you do not have MS. I certainly hope your cardio issues can be resolved without too much trouble.

    MsJayhawk, one quick follow up question, if it's not too personal, what were your sisters symptoms?

     
    Reply With Quote
    Old 01-19-2016, 05:36 PM   #11
    MSJayhawk
    Senior Veteran
    (male)
     
    Join Date: Sep 2007
    Location: Arizona, USA
    Posts: 9,811
    MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
    Re: MS? Yikes!

    Bellazae333,

    Her major one was fatigue and lack of energy. IT was similar to my MS fatigue which prompted her to ask questions. It was during the fall season, so no temperature intolerance was noted. As the heart valve was only intermittently problematic, a stress test is the only thing that was noted that I remember. She had surgery within 6 weeks of her cardiologist's visit.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Reply With Quote
    Old 01-19-2016, 05:47 PM   #12
    Bellazae333
    Newbie
    (female)
     
    Bellazae333's Avatar
     
    Join Date: Jan 2016
    Posts: 5
    Bellazae333 HB User
    Re: MS? Yikes!

    Ok thank you!!

     
    Reply With Quote
    Reply Reply

    Tags
    b12, b12 deficiency, multiple sclerosis, vitamin d, vitamin d deficiency



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 12:52 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!