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    Old 03-01-2015, 10:04 AM   #1
    Mags H
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    Lightbulb Could it be MS or something else?

    Hi everyone! I am reaching out to share some symptoms that have been getting progressively worse in hopes someone else knows/ or has experienced the same ones. I am trying to get any incite I can as some of them are alarming now. I do have an appointment with Neuro already scheduled but still wanted to share.

    1) Feet become numb. When I walk I know I'm making contact with the ground but can't feel it, like when I had an epidural with the delivery of my son.

    2. Vision is doing some wonky stuff. Sometimes I look at stuff and what I see shrinks and expands, its really quick and last a few seconds. Also I am getting "blinder" black fields of vision in my peripheral. Also eyes hurt and burn. Increased floaters...they are so bad....

    3. Trouble gripping objects with right hand. I can't even grab the sheet on my bed and pull it to me. Just no strength, very weird sensation.

    4. My face has started to tingle on the right side by my cheek and chin area. This started last night. Didn't hurt just felt like a thousands of little feather tips were brushing on my face.

    5. Horrible tinnitus! Usually in left ear, but has now showed up in right ear. Also the most alarming one is the sound hallucinations. I will " hear" music. Usually old 40's bandstand music. I know I am not losing my mind. It is there. Also last night instead of music I heard what sounded like an old pinball machine game. I even went into my sons room to see if he was playing anything, and nope he was fast asleep.

    6. I now get up 3-4 times a night just to pee. This has never happened. And every time it's like a downed gallons of water. At first I thought well maybe I have been drinking to much before bed...nope.

    7. The newest scarier one is the sleep paralysis and now waking hallucinations. The other night I heard this loud buzzing by my ear, it "woke" me up and I sat up and saw what I thought was a giant mosquito hawk flying around. It almost had a glowy white silhouette. It scared me so bad I almost fell over the back of the couch. After about 45 sec I realized there was nothing there, and then burst into tears cause it felt like I'm losing my mind.

    8. I also have bad joint pain, and experience shooting electrical pains down my arms and legs that go straight to my fingers, back of a knee, or into my feet.

    I am experiencing hair loss again (so fun). My hands and feet are always cold. I have zero tolerance for cold weather anymore. Also showering now has to be done in luke warm water otherwise my feet burn so bad, and then the itching all over starts.

    Also sometimes my neck muscles will get locked out, best way I can describe it after I yawn. This has happened twice now. I had random episode of losing my voice, was hoarse and croaky sounding with voice breaking, lasted about 2 days then returned to normal.

    RA, Lupus, have been ruled out.

    If anyone can relate or can shed some light I would be so greatful! Thanks!! Maggie H

     
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    Old 03-01-2015, 12:04 PM   #2
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    Re: Could it be MS or something else?

    Hello Mags H,

    If you have not had your vision evaluated by an Ophthalmologist then please do so, the eyes are their specialty.

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    Feet become numb. When I walk I know I'm making contact with the ground but can't feel it
    In the case of Multiple Sclerosis your feet would be numb even when not walking. Numbness in Multiple Sclerosis is not affected by position. You cannot shake the numbness away and it doesn't matter if you sit, stand,or lay down.

    Sleep paralysis and the hallucinations that can happen are really quite common. Many people deal with this and do not have any health issues. However, there are medications that can cause sleep paralysis as can sleep disorders. A sleep study could rule in/out a sleep disorder.

    Tinnitus is very common and should be evaluated by an Ear Nose and Throat (ENT) specialist. This can also cause auditory hallucinations.

    Hair loss can be caused by medications, health issues such as Thyroid but is not caused by Multiple Sclerosis. Hair loss experienced with MS is due to the Disease Modifying Drugs (DMDs) used in the treatment of MS.

    Urinary problems should be addressed by a Urologist and do any necessary testing.

    Joint pain is not a Primary symptom of MS but is a Secondary symptom due to mobility problems and spasticity.

     
    Old 03-01-2015, 12:05 PM   #3
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    Re: Could it be MS or something else?

    Maggie,

    I will go through your list herein and give you my non-medical opinion

    If MS is a possibility, a general neuro should be replaced with an MS Specialist.

    "1) Feet become numb. When I walk I know I'm making contact with the ground but can't feel it, like when I had an epidural with the delivery of my son."-

    How long does this last? Is it only when you walk? It can be a cardiovascular issue or something as simple as a pinched nerve.

    "2. Vision is doing some wonky stuff. Sometimes I look at stuff and what I see shrinks and expands, its really quick and last a few seconds. Also I am getting "blinder" black fields of vision in my peripheral. Also eyes hurt and burn. Increased floaters...they are so bad...."

    Vision concerns should be seen by an ophthalmologist (an eye doctor with an MD, not an optometrist). The eye doctor can usually see you sooner than an MS Specialist and can evaluate your vision concerns. Optic Neuritis affects up to 20% of MSers, but those with ON may or may not develop MS. It was once thought to be the same but is now seen as a different chronic problem.

    "3. Trouble gripping objects with right hand. I can't even grab the sheet on my bed and pull it to me. Just no strength, very weird sensation."

    Is this something that corrects itself or does it last long (24+ hours). Again, this can be a pinched nerve too or can be a sign of a vitamin or mineral deficiency. This is a symptom that continually affects me 3-4 times a week.

    "4. My face has started to tingle on the right side by my cheek and chin area. This started last night. Didn't hurt just felt like a thousands of little feather tips were brushing on my face."

    Facial tingling or numbness can be an MS symptom. Look in the mirror and smile and see if your smile is even or lopsided. When I have "droopy face" my right side sags.

    "5. Horrible tinnitus! Usually in left ear, but has now showed up in right ear. Also the most alarming one is the sound hallucinations. I will " hear" music. Usually old 40's bandstand music. I know I am not losing my mind. It is there. Also last night instead of music I heard what sounded like an old pinball machine game. I even went into my sons room to see if he was playing anything, and nope he was fast asleep."

    My experience with tinnitus and MS in Pulsatile tinnitus which will persist for several days. Pulsatile tinnitus may or may not be MS related. It sounds like your heart beating in your ear or a helicopter approaching and departing. Big Band music? LOL, maybe your son likes Lawrence Welk or Glenn Miller??


    "6. I now get up 3-4 times a night just to pee. This has never happened. And every time it's like a downed gallons of water. At first I thought well maybe I have been drinking to much before bed...nope. "

    This happens to me when stress is affecting me. One thing that may work is to cut off the bladder supply 2-3 hours before sleeping. This has helped me. Bladder issues may or may not be MS related.

    "7. The newest scarier one is the sleep paralysis and now waking hallucinations. The other night I heard this loud buzzing by my ear, it "woke" me up and I sat up and saw what I thought was a giant mosquito hawk flying around. It almost had a glowy white silhouette. It scared me so bad I almost fell over the back of the couch. After about 45 sec I realized there was nothing there, and then burst into tears cause it felt like I'm losing my mind."

    The buzzing sounds like my pulsatile tinnitus but yet different. Not sure about your hallucination or dream. Guys do not remember these things as well as women.

    "8. I also have bad joint pain, and experience shooting electrical pains down my arms and legs that go straight to my fingers, back of a knee, or into my feet."

    Sometimes the pain is felt at our joints, but it can in fact be related to muscles. A vitamin D deficiency can cause such pain too. A simple blood test can help.




    Heat and or cold intolerance can also be MS related.

    That all said. MS symptoms are not consistent with all of what you have shared, BUT you cannot dismiss MS and you can have more than one thing happening. There are over 400 known MS mimicries and an MS Specialist would have to eliminate all of these and then weigh you against the Revised McDonald Criteria.

    While awaiting your appointment, see the eye doctor as well as your GP. Your GP can do a blood test to see if you have any deficiencies. About 15% of those who present with MS like symptoms are actually Vitamin D deficient and this is an easy fix.

    Thanks for sharing I hope I have been able to help you and not muddy the waters
    __________________
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    Old 03-01-2015, 12:50 PM   #4
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    Re: Could it be MS or something else?

    Thank you so much for taking the time to write me back! The first time these symptoms showed up was in 2012. And I trumped it up as well as mu husband to a pinched nerve too. They lasted for months, with some consistent and then new symptoms would pop up differently each week, then some symptoms would drop off. I have had an episode of face drooping, that was in 2013 sometime...I also was having olfactory issues...smelling ammonia and gas out of no where,,,then my face did the drop thing. My neighbor and friend saw me and took me to ER. They did a cat scan/ mri and there was spot found, but they did not see any cause for concern so I just thought it was stress related etc.

    My feet stay numb, I did't explain that very well in my first post, whoops! It's been about a week now. First it was off an on, now all the time. Laying down, sitting etc.

    My right hand as started with the tingling now too with some numbness but so far it comes and goes, been about 2 weeks.

    I did cut out liquids hours before bed to see if that helped, but still have the night time bathroom rushing to pee. So much fun LOL. Also my poor husband I about fell over him trying to get out of bed. Also the one thing my husband as noticed is I run into things a lot more these last few weeks. I am by nature " a bull in a china cabinet" as my mom says hahah. But Ross (hubby) says he has noticed an increase in clumsiness.

    I did recently have blood work done and my OH-25 Total (vitamin D) was extremely low. This is the first time I have ever had this show up on blood work.

    Also I am adopted and when I was pregnant they gave me a full genetics test and the result was CMT (Charcot-Tooth Marie) Now I was never made aware of this while I was in the Army. (Was in for 7 years) When these symptoms showed up in 2012 I did my own investigating into my medical history and found that test. Waiting to have it reviewed by my doc cause they found 8 genetic mutations, but not sure if just a carrier or I actually have it. My adopted family history is Acadian French and Cajun. I also was made aware that females in my biological family have MS so hence why I decided to, course they are that have CMT as well... its like a game of Where's Waldo!!!

     
    Old 03-01-2015, 04:05 PM   #5
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    Re: Could it be MS or something else?

    Maggie,

    Thank you for your clarification. You should have the previous spot found sent to an MS Specialist. As time has passed and symptoms have presented, an MS Specialist should be consulted to look over the images. A new MRI could be ordered to see if additional spots are present.

    The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body. The normal range is 30.0 to 74.0 nanograms per milliliter (ng/mL). Your levels and what is low will depend on which test you were given. Your "score" was or is low but might also be considered deficient. Have you supplemented your Vitamin D since the test? D3 is the normal long term supplement. If your D levels were or are deficient, you can have MS like symptoms which can increase debilitation. You can also have MS and a D deficiency.

    I had a low normal and supplement to maintain my D levels at mid-normal. For me, I just need 1000 iu/day of D3. My MS Specialist has monitored my levels and determined that the dosage is sufficient for me. I know others who need more each day. One lady takes 10,000 iu/day. She had a very low level of D and also has diabetes and MS. For her, she has responded best to 2000 iu/5 times per day. Again, your doctor is in the best position to advise you.

    MS has yet to have a genetic link found. Even though you might have a biological medical history, the greatest risk is if you have a blood sibling with MS, but this risk is still statistically insignificant. That is, the risk exists, but the chances are near zero. There are families with a propensity to develop autoimmune disease which could include MS.

    I would go through your history and log in a journal your symptoms to date from 2012 or earlier? You might find a pattern. Symptoms which persist for 24+ hours would reach the MS threshold for consideration. Ask an MS Specialist to review your case history, especially with the spot that was found earlier. You might be close to an answer already.
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    Old 03-02-2015, 11:45 AM   #6
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    Re: Could it be MS or something else?

    Mags,
    there is nothing I can say which hasnt been said already. I urge you to see a good opthamologist~ what you describe could be optical neuritis, which is inflammation of the optic nerve. It causes both color blindness and peripheral problems. It can be found very easily by a good opthamologist and a field vision test.
    I also urge you to see an MS specialist, not a regular Neurologist. Unless your neuro has a large stable of MS patients, they do not always know what can be attributed to MS. No two cases are exactly alike- and if the doctor isnt overly familiar with MS, he can miss things...an MS specialist will not.
    I hope you start feeling more like yourself soon. Keep the good attitude. I can hear your smile through your post and youll need that positive attitude to get you through the massive amounts of tests which await you.
    Good luck and please keep us posted.
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    Old 03-02-2015, 07:47 PM   #7
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    Re: Could it be MS or something else?

    Thank yall and you for the responses and positive messages. Not gunna like almost teared up reading yours. For a little while I've been feeling like a crazy person, or at least felt like I'm going a little nuts. It's nice to hear that I have not been the only one. I was luck enough to get an appointment with a really excellent Neuro here in Houston. Well all what I researched on him he seems like a really great guy and doctor. He does specialize in different diseases, MS, Mystania Gravis ( not sure on the spelling) Parkinson's and a few more. So fingers are crossed that he can piece together stuff. I have also called my GP and asked about some specialized Ophthalmologists in my area and they gave me one and I will be calling tomorrow. :-) Again I can not express enough appreciation just for everyone taking the time ti write me back. Sappy sounding I know but I've been frankly a little nervous and scared of all the new symptoms.

     
    Old 03-02-2015, 08:04 PM   #8
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    Re: Could it be MS or something else?

    Maggie,

    No worries. You will do well. Your doctor is probably not an MS Specialist as they usually have "fewer shingles". But if your doctor has MS experience, you should be fine. Getting a diagnosis, even if it is chronic, brings a sense of relief insomuch as it identifies your adversary and allows you the opportunity to have a game plan.

    I have been with MS for 38+ years and I can tell you that your good days outnumber the bad days. Give yourself time to "roll" through the rough times. You may have something easily treated and that is what I shall hope for you. Please know that you can lean on us as you need it.
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    Old 03-03-2015, 03:07 AM   #9
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    Re: Could it be MS or something else?

    Mags,
    Great job! Finding a doctor who can start guiding you is a first step. Please see that opthamologist as soon as you can. When you call, tell them you are having issues- theyll get you in sooner. Its important to take care of your eyes!
    Many an MS patient has been diagnosed by an opthamologist first....not to say that the eye doctor can give an actual MS diagnosis, but they can see the signs, and can usually tell if there is a reason to get you in front of a neuro faster.
    They can see behind the eye, to the optic nerve, and that is an indicator if something is wrong. So, please go see him!
    Keep us posted. If you need us, we are here.
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    Old 03-05-2015, 03:43 AM   #10
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    Red face Re: Could it be MS or something else?

    Well on Tues had the appointment with the Ophthalmologist. He was extremely nice and for once really heard what I was telling them. Good news my eyes show no signs of retinal tearing, pressure is good etc. Yay! He did though refer me too see Dr. Tran a Specialist Nuerological Ophthalmologist here in Houston. He just had the utmost respect for her and said she would absolutely do everything within her power to help me. With all that I told him he definitely wanted me to see her sooner rather than later. I see her March 9th!

    Now for the frustrating Neurologist I went to yesterday ( Wednesday Mar 4). I was determined and did arrive there positive and open. ( 7 years in the military and then dealing with the VA over the years has really jaded me ). I brought all what I thought was relevant, MRI/CT of brain from May of 2014 , old images, surgery stuff etc.

    The doc had me start at the beginning which I did and he typed up everything I said. He did a test with a tuning fork? It vibrated or buzzed when he touched certain areas.. well areas on my right side I felt much less than my left side. He also had me walk, finger-nose stuff/ and poked me with a broken wood stick in certain areas asking if I felt the point..again right side felt much less than left.......and then..

    He said you have a lot of years of dealing with symptoms etc. He said all the way back to some in 05'. I did remind him that deployments and typical Army wear and tear on some things I know have taken place...he said well one reason for your symptoms is an immunological B12 deficiency... he then said I would say/ incline to say MS but your CT/MRI from last year show no lesions, etc. Then he dropped the giant hammer on me and said...you know, there is something else that effects quite a bit of people.

    He said Somatoform Disorder- he said well people who suffer from significant anxiety can actually cause their brain to trick them into symptoms and pain etc, he said anxiety could very well be responsible for all my symptoms.... then said well because of the 17mm x 18mm mass from your MRI last year, lets re-MRI your brain- MRI T3, but I highly doubt its anything and the radiologist who read it may have just looked at it wrong...( I'm thinking ughhh ok) he then said lets get you set up with a nerve test also...

    He was very amendment about this being in my head and that the brain is very powerful and can manifest pain and your symptoms, where you believe they are real, cause I have been doing this awhile and you are either the un-luckiest 32 year old girl I've ever seen, or its the anxiety that has taken over and controls your life....( Holy crap Batman! just two choices to choose from, woo-hoo! ).

    I kept my composure after checking out, made it all the way till I got outside the bldg and fell apart. Since deaing with VA docs in the past and getting bounced around all the time...etc etc The way he spoke to me and what he said just was a big ole damper on my morning.

    I feel like he just dismissed me or had made his mind up right at the get go. In the past I have felt like holy **** is this in my head? There have been instances when I have felt like I was losing my mind a bit,,,but I also went and sought help for it. I know I sound like a big old sad sack or Debbie Downer...but when he kept asking hows your stress level at home...how are you managing it, and I told him well my stress isn't bad...apart from the very new freaky symptoms now accompanying old ones....he asked again you sure your not actually stressed and don't realize it....I finally had to say...NO! I have dealt with stressful situations quite a bit,,,,Iraq deployment....just a wee bit stressful...and I handled that fine because I mentally know the importance of taking care of oneself. UGHHHHH!!!

    Ross( hubby) has reassured me that I'm not as he says "Cray-Cray" and that he knows this has been hard. Ross suggested lets just get the MRI done, nerve test and if he's still wanting to turf you as mental, then we take the reports and find someone who will do more than two things and label you an anxious-stressed somatic disorder...

    Well that was my saga over the past few days. Has anyone else ever been told this or something similar? Or told well we just don't know, lets refer you to a psychiatric doc. BTW I know this is not in my head, I do...but talk about cutting my static line before I was ready to jump out the plane!

    PHEW! This one was long...but I do feel better after furiously typing LOL Hope to hear from yall soon....thanks yall!!! Maggie H

    Last edited by Mags H; 03-05-2015 at 04:03 AM.

     
    Old 03-05-2015, 06:55 AM   #11
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    Re: Could it be MS or something else?

    Hi Mags H,

    The Neurologist is not dismissing you or your symptoms as he is ordering MRIs. Your Neurological exam sounds like is came back fairly normal, which is good.

    IF Somatoform Disorder (conversion disorder) does end up being the cause this does not make your symptoms not real nor would it mean you are crazy. Those with Somatoform Disorder have very real symptoms and very real difficulties.

    Some Drs. throw out Somatoform Disorder as a possibility. Sometimes the Dr. is right and sometimes the Dr. is wrong.

    If you do have a B-12 deficiency this can cause Neurological symptoms. Getting the B-12 levels back within normal ranges can decrease and/or resolve Neurological symptoms. B-12 is one of many things that can mimic MS.

    Take care and best wishes on your MRI.

     
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    Old 03-05-2015, 08:03 AM   #12
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    Re: Could it be MS or something else?

    Maggie,

    Great to see you get a referral to see a neuro-ophthalmologist as they are further specialized and often a member of an MSer's team specially when vision problems present.

    Anxiety as the neuro described can be very real, but treatable. It does not mean you are crazy and anxiety is a major MS mimicry along with Vitamin D and B12 deficiencies (or a combination thereof). My advice to you is to put the neuro behind you and see an MS Specialist. If it is MS, it is quite literally in your head.

    The MS Specialist may find nothing and might refer you to a neuro-psychiatrist. If anxiety is at the root, then the doctors need to know the best course of action to treat it.

    Losing it after an appointment is often NORMAL! Studies have found that when the patient's BP was checked by a nurse it was lower than when a doctor checked it. There is a certain amount of anxiety and stress with seeing a doctor. When you are stuck in limbo land this can weird you out even more. You are not crazy, just a normal person seeking answers. DO not let anyone paint you into a diagnosis without the facts to back it up. If it is Anxiety alone, then you should not have lesions consistent with MS.....etc. There are sufficient objective data against which to compare a diagnosis. I sincerely believe you will get that with an MS Specialist.

    Stay strong and remember, Anxiety and/or MS.......they are literally in your head!
    __________________
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    Eternally blessed and eternally optimistic!<><

     
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