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  • Undiagnosed but wondering if it is MS

    Hello, I am new to this site and and hoping for some clarity. I went through a major depression in 2017-2018. In 2018 I started having pain, tingling and numbness in my hand and feet. I now have it up past my knees. Months later I was so weak had to start using a walker. Then a few months later began having speech problems, then later the ringing/busting in my ears. Gabapentin makes it possible for me to get around with the walker and speak somewhat coherently. I know I have other symptoms but my mind just draws a blank right now. Went to multiple doctors last year but no one would listen to all of the symptoms together. I have not been able to work for the last two years so have no insurance. I can’t get Social security disability because I can’t get a diagnosis and can’t get diagnosis without insurance. Just want to know what is wrong with me. So frustrated. Thanks for listening, Wendy

    Crawling sensation on scalp

    Hi people, I joined this site last year because it was suspected that I have MS, but after an MRI (showing 2 small lesions) and a (useless) 10 minute consultation with a neurologist it was concluded that I suffer from silent migraines.

    By now though I have serious doubts about this diagnosis, since I also have symptoms which don’t match with migraine (sudden debilitating fatigue, muscle spasms and ‘the hug’) but with MS, alongside most of the other symptoms mentioned on this site.
    I also have this intense crawling sensation on my scalp, like an electrical current rippling over my head, mostly from the back towards the front. I would be happy to hear if anyone else in here recognizes this since I’m wondering if it is one of those odd symptoms which aren’t on the official list but are common among patients anyway.

    Apart from that I also experience a sort of ‘brain zaps’ especially when I’m lying down at night to go to sleep. It’s a really bizarre feeling, like my brain is jolting inside my skull. This waxes and wanes over the weeks and months, like the other symptoms. Does this sound familiar to anyone?

    Thanks for reading so far, I’m trying to get some more clarity since I am contemplating on getting a second opinion. Your input is greatly appreciated.

    Odd "smell"

    From time to time I have the sensation of a very disgusting, sickening smell. It’s mostly if I am under a lot of stress. The scent is so overwhelming that I can’t eat. Even water tastes like the scent. It is kind of like bad sweat (way past perspiration) and rancid oil. It can last a few hours to a few days and I have often lost a small amount of weight because I can’t make myself eat. Because my doctors can’t find any other reason for it, they have said it must be my MS. Has anyone else been bothered with this?

    MS & Kidney Cancer

    Has anyone else, past or present, been diagnosed with kidney cancer? Also- I have never typed in a forum. I apologize if I’m doing it wrong. lol

    Worried sick :(

    Hi everyone,

    I’m starting this thread because I don’t know where else to turn. I’m really worried I might have ms but have not been diagnosed.

    A few months ago I started having a weird goosebump/crawling sensation on my scalp – it only happened a few times over one day, and then went away completely so I didn’t think anything of it. A few weeks later I noticed a tingling sensation on the back of my legs while standing in line one day, but again it went away for weeks after and I didn’t think anything of it.

    About a month ago, the scalp tingling came back, though I’ve only had it a couple of times since. However, my legs have been the biggest concern, as for the past 3-4 weeks, I’ve experienced:

    – tingling on both of my legs, though definitely more on the left side. Sometimes it’s a tingly/prickly feeling, sometimes more like the feelings of goosebumps, but never completely numb.

    – In the last week or so it’s been more on my left foot, and it’s a mix of a tingly/prickly/buzzy feeling and a mild dull ache/cramp. In the last couple of days it’s been an all day long kind of thing, though it does seem to feel a bit better when I’m walking, and worse when I’m still.

    – Sharp upper back pain, more on my left side (between the neck and shoulder). Have gone to an RMT which helped and went to a chiropractor yesterday – the pain has greatly improved since the chiro visit, but the leg/foot tingling has persisted.

    – I have noticed my vision seeming a bit worse/blurry, from a distance. I had lasik done years ago, and made an appointment with my eye doctor. He said I am showing no indication of optic neuritis which was my concern, and said I have dry eye, which is causing the mild blurriness. He gave me special eye drops which have seemed to help when I use them.

    – I did notice a mild tingling on my left hand once or twice on days when the back pain was really bad, but nothing too noticeable.

    – No other pain, dizziness, headaches, bladder changes, sleep changes or anything else I’ve been able to notice.

    The foot/legs tingling (and the scalp thing) has me seriously concerned about MS, to the point that researching MS in the past month has basically become my life every day. It’s impacting my every day life because it’s ALL I can think about. I did go to the hospital one day and he ran some basic tests and said he wasn’t concerned, but referred me to a neuro to give me peace of mind – the neuro appt is in 2 months and if he decides to give me an MRI I’ll probably have to wait even longer (I’m in Canada and the wait list for MRIs here is insane – out of pocket would cost me several hundred dollars).

    I’m so scared and don’t think I can live with this anxiety for the next several months. Prior to the past few months, I have never had any symptoms like this before (except for the upper back pain which I’ve always had on and off due to poor posture – but never had any body tingling).

    I’m so concerned that even though I’ve felt the tingling and goosebumps on both legs, it definitely seems more prevalent on the left leg and left foot and I know MS usually manifests first on one side of the body.

    I’m so so scared and unsure of how to live the next several months of my life until I’m able to get an MRI – I might just bite the bullet and pay for a private scan.

    Is there any way I can differentiate the type of tingling/prickling that happens with MS vs with other diseases?

    New member…Old to MS!

    Hi! I’m 33, but have had MS since age 17. Recently joined because I’ve realized I have no real support.
    Also I have no other MS friends, and it’s always great knowing someone “gets it”.

    … unhelpful reactions.

    I am a bit disillusioned at the moment. I am having yet again another bladder infection and I am really run down. My line manager at work has just given me loads of work, more than even a healthy person could manage. I did discuss the issue with him on several occasions, but he does not want to listen. He knows about my MS, but somehow do not understand, that 40 hours plus doctors appointments and so on is a lot to take on.

    I feel really exhausted and all my sister has to say is, that I should just pull myself together and get on with it – on one occasion describing me as being weak. My partner tells me that, I should think more positive. In fact, at the moment he is thinking of leaving me, because I am not enough “fun”. While ignoring the fact that maybe him getting hardly any work (he is a freelance designer) is the main cause for his unhappiness.

    I am trying my best to get on with life, even when walking is difficult, my bladder is all messed up and I am just tired most of the time. I know it could be worse … but still. I just wished that sometimes, people would be a bit more compassionate and think before they speak. I guess they are just as scared as I am … and do not know how to respond differently. But that makes dealing with MS a lonely business at times.


    Hello, I am on the Tysabri drug and am up to number 14 infusion, At my last one they queried my low blood pressure, since I have been having daily on going issues, headaches, dizziness and my walking is terrible?
    My BP ranges from 80/55 to mid 90s over mid 60s my pulse is generally 64 to 70,
    My last set of blood tests were ok, Now the MS Nurse seems to think it maybe Heart related???
    Has anyone had low blood pressure issues with Tysabri ?

    How do I afford MS?

    I don’t know how to afford this disease. I am 45 years old, diagnosed 1/2008, never married, never had childeren. I was on AZ Medicaid, running smoothly for 2 years, then bombshell. Due to Obamacare my Neurologist stops accepting Medicaid patients, I get terminated from my 20 year career for not meeting a quota, and the stress makes me feel like the “Walking Dead”. After the loss of my job I received assistance from the drug manufacturer while looking for another job with benefits. My doctor convinces me to apply for SSDI as “work is killing you”. I find another Neurologist upon first appointment hands me a letter he too is dropping Medicaid patients. Boom another bombshell. Then I get a Medicare card and booklet describing a premium, copay, coinsurance, deductible. My Medicaid will end 4/1/2016. Now I need a neurologist, can’t afford Medicare, and can’t afford my prescriptions. I may as well crawl under a rock somewhere.

    Skin necrosis and Aubagio?

    Hi, my doc is recommending that I start on Aubagio, but I’ve had issues with skin necrosis while on Rebiff. I see that skin issues are listed as a side effect with Aubagio too. Should I be concerned? Have others had skin necrosis or other issues with Aubagio? Thanks!

    Could this be an Ms?

    Hello there,
    Please pardon any grammatical mistake in this post as English is not my first language.
    So let me try and make this post as short as possible so as not to bore you.
    My problem started last 4 months. It was one afternoon that I felt a weird sensation in my head, like there was something at particular spot on my head. I dusted it with my hand but it wasn’t going any where. I became freaked out.
    Later in the night when I was about to go bed. I started thinking about that sensation. I started thinking about a lot of things that night. I remembered that I have had what I could describe as exploding head syndrome two months earlier- when falling asleep I felt a weird noise like electric shock and saw bright like in my eyes. Then I didn’t even know that could be exploding head syndrome, so I head to Google and search about that kind of experience. The Google search lead me to a forum and there, someone mentioned that such kind of feeling occur with brain tomor. I literally had a panic that night after reading that. I couldn’t sleep and my body was shaking, trembling. I cried that night. I was very scared because my brother – not same mother died of brain tumor and I saw what the excruciating pain he went through.
    I became very anxious since then because I believe I have a tumor. I’m always worried and couldn’t sleep in the night and my head feel weird. The first sensation I had went away but my scalp still feel weird. It feels like itching or little tightness on the right side of my scalp and some funny sensation like crawling on my head. So I thought it was because I’m not sleeping well. I was scared of going to the md because I’m afraid they may confirm my suspicion.
    I lived with anxiety and insomnia for over month before I summoned a courage to visit a MD. After explaining everything to him, he referred me to psychiatry, the psychiatry say I should just calm down and I would be sleeping fine.
    I came back home but still couldn’t stop worrying about the tumor so I wasn’t getting enough sleep- just 3 hours a day. I was walking one day when I felt a problem of pickle in my leg. I became scared and worried again. Then episodes of pin and needles followed. I was searching forum about insomnia when I met someone that faced similar issue. We talked on phone and he calmed down and give me sime tips. I become less worried and my sleep is improving. The pin and needles feeling went away completely but still I was little anxious. Anytime I went to bed, my mind would tell me I may experience exploding head syndrome or sleep paralysis again but I was still having no difficulty sleeping.
    it has been almost a month now my sleep pattern improved but I’m still feeling a sensation that feels like crawling, fizzing, itching, bubble on my scalp. Sometimes if I’m busy or occupied, it went away but once I remember it and I’m like where it is, it will come back. It also stops once I placed my hand on my head.
    Last few days it spreads the intensity of the sensation reduced on my scalp and spread to some areas on my forehead.
    I am also having the problem of anytime I think or read about a Patriculr symptoms of a disease, the symptoms would start manifesting on me but will stop when I forget about..
    There was time I was searching on Google because I felt like I was choking, I saw that it could be liver issue and other symptoms include itching on the skin. I started feeling the itchiness not long after reading that. The choking went away after some days and the itchiness went away completely. Even before this crawling/bubble spread to my face, I thought about it that it may spread to my face and cause me facial numbness. And boom after few days, it’s already there.
    Now when I am walking sometimes , I feel little tingling in my right leg that run from my patella to my thigh. Few days back I felt a little ache at the extreme of my index finger in the night and some time toe and it went away few hours later.
    I always bathe with hot water before going to bed since my first incident yesterday I didn’t and the sensation on my head is very less today.
    Could this sensation on the scalp and little tingling on the leg be an early symptoms of ms?





    Helicobacter treatment in MS

    I have MS for about 15 years now. Recently I got diagnosed with Helicobacter pylori. According to some studies this germ might play a role in the context of MS.
    Now I am looking for people with MS that had Helicobacter and were treated successfully. My question is: did your MS improve the years after the Helicobacter treatment? Or did it progress faster? Or has there been no change in the MS progress?
    Would be so glad to receive some answers! Thx a lot, Tom

    Chin numbness and lesion on frontal lobe

    Hi there,

    I suppose you can add me to the long list of folks who think they may have MS. It’s a big maybe, but here’s my story.

    I’m a 27 year old female-to-male individual. Five years ago I was hit with a debilitating treatment-resistant depression and severe fatigue out of the blue. I was sleeping 36 hours at a time. I also began to have sharp headaches in one spot on the front right, and this continued daily.

    Eventually I had an MRI and was diagnosed with what they thought was a 1.5 cm telangiectasia/vascular lesion in that spot.

    The depression has continued. I failed 20 drugs and had TMS, ECT, and ketamine.

    6 months ago I began having intermittent numbness in my left chin, just below my lower lip. I wrote this off as psychosomatic, but it has become almost constant now.

    I also began to experience some numbness in my left pec area and down my left arm into my pinky and ring finger.

    Today I’ve had a mild squeezing tightness all around my upper chest.

    The chin numbness is what I’m most curious about, because my lesion is nowhere near the motor or sensory areas of the brain, and is not thought to be a cause of any symptoms.

    I will meet with a neurologist to re-scan the brain lesion. But I wonder if anyone’s MS lesions were initially diagnosed as vascular.

    Thanks much,

    New to forum, awaiting diagnosis but have questions

    Hi all, I’m 29 and checked in to the emergency room at the hospital 2 days ago. I have been unable to move my toes in my left foot for the last 3 weeks and have a stepping gait in my left foot. I have been having issues with fine motor skills in my hands.
    I saw a neurologist about my toes and hands andhe said he thought I had damaged my perineal nerve and may have carpal tunnel on my hands. He set me up for a nerve test on January 9th. I started getting weak about a week ago especially in my legs. I was also getting incredibay bad restlessness predominantly in my legs. I called the neurologist and he told me I had anxiety.
    Over the last 5 days I became weaker and weaker. The night before I went to the hospital I was trying to put together a walk in kitchen toy for my son for Christmas. I kept telling myself it was just anxiety and that my weakness was in my head and that I wasn’t really off balance.
    I tried as hard as I could for 4 hours and could not complete it. I couldn’t use the screw driver, couldn’t get my hands to work, was falling over sideways while sitting down and realized i wasn’t making things up in my head something was really wrong.
    I had an MRI when I was in the ER the results showed many ‘abnormalities’ in the left and right side of my brain in the gray matter. (Sorry am new to some of the lingo)
    I was told I may have MS and they would do further testing. Today I had a lumbar puncture and another MRI to capture regions that were not captured in the first MRI.
    I am expecting some more clarity tomorrow and obviously hope it ends up being nothing but based on the results I think that’s unlikely. At this point I have to be holding on to something or someone because my legs are so weak and I’m so off balance. I have been sitting down to use the bathroom because of this and today when trying to stand up and holding onto one of the bars by the toilet I fell over.
    Sorry if I am being long winded, I guess my real question is if anyone had similar symptoms to me when they were diagnosed and more specifically if so has anyone regained their balance and ability to walk.
    I have a 2 year old little boy and I guess I’m hoping I am going to be able to carry my son again and hopefully have somewhat of a normal life.
    I know everyone’s journey is different and there are no guarantees. I also know I’m jumping the gun a little bit without an official diagnosis but am really hoping to connect with people who have walked through this. I’m just feeling a little bit alone and uneducated at this point.
    Thanks for reading, looking forward to hopefully seeing a response or two. I will update once I have a confirmed diagnosis whatver that may be. Thanks!

    Please help! Could this be MS?

    Hi there! I am new here! I am a 21 year old female who has been having kind of weird symptoms since April 14th(just two weeks after my 21st birthday :'( ). Firstly, I wan’t to apologize about how long this post is and I am sure there are other people who have posted these questions before, but I just really need some advice. So, It started with headaches that triggered migraines that made me go partially blind in my left eye(my doctor diagnosed me with Ophthalmic Migraines). I had never had migraines before, so my doctor was concerned and I had an MRI done. Apparently it came back fine? I am not really sure because it took 2 weeks for anyone to call me about it, and all I was told was that I didn’t have a brain tumor lol… Anyway, a few weeks later I woke up and the left side of my body was numb. I didn’t think much of it; I just thought maybe I slept wrong or something. While at work a coworker of mine told me that she suspected I had MS, but I didn’t really know what it was so I just brushed it off. Eventually, I saw an ENT doctor and he said everything was fine. But I was still getting new symptoms like everyday it seemed like. It mostly started with cognitive issues; like memory loss, concentration, etc.. Typical brain fog symptoms. I brushed them off as migraine symptoms and my doctor scheduled me for blood work. They took 8 vials of blood and tested EVERYTHING. I am talking everything from a normal CBC to like my B12 and Lyme Disease. Everything came back normal, except all of my white blood cells were low. No one seemed concerned however, so I let it go. But I was still getting weird symptoms. I now started experiencing physical symptoms at this point. And this is where I started to question whether or not I had MS or it was just stress. So, for example one night I was getting ready for bed after work and out of nowhere I started getting like this tingly feeling across my chest. It started in like my under arm area and then wrapped around the front of my chest. I didn’t have any pain or tightness, and it was rather short. But it was weird. Later that night I had that same feeling on the center of my upper lip. Again it only lasted a few moments and then disappeared, but it was weird. Every once in awhile I will go through like a period where my legs/arms are constantly falling asleep and/or tingling. One night at like 3AM I woke up and realized the center of my right hand was tingling, again weird. I also woke up one morning a few weeks ago and I went to grab my phone next to me with my left hand and it literally felt like there was lead in my arm; it was SO heavy it just fell back down on my bed. I have also noticed that it is very difficult to walk in a straight line, I always have to pay attention to how I am walking or standing or else I am stumbling all over the place and falling down. I have never been a very balanced person, but I at least could walk in a straight line. It’s like I’m telling myself something and my body is doing something completely different? Anyway, so back in July I ended up seeing a Neurologist. My first appointment went pretty smooth. He told me that my eyes were “unusually dilated” and “weren’t really reacting to light”, but didn’t go on to explain what that meant, idk if it is relevant or not? He told me he was going to review my MRI again because he couldn’t believe it came back clear. Again, I heard nothing back. So, maybe it is okay after all? My next appointment he acted like we never met though, so?? But I have no idea(that’s why I am here haha). I had this MRI done in May though. Fast forward to like the end or July/early August. I woke up one morning and I felt like I had been hit my a freight train. I was physically drained, and my body was burning in pain. I could barely move it hurt so bad. My lower back hurt so bad it took me forever to sit up. This lasted for about 2 weeks and slowly went away. I still had a lot of the fatigue though. My last neurologist appointment I explained to him that I had also been experiencing this really intense burning pain in my left cheek bone and my jaw. This pain was excruciating! I ended up taking some of my emergency pain meds that I had never taken before to try and dull some of the pain. He basically explained that it appeared like I had Trigeminal Neuralgia(?) but it could just be caused by a viral infection… and then proceeded to ask me if I have herpes lol. So, basically I have gotten no answers and I am going to Disney World for 14 days in December and I am terrified. I walked to and from work yesterday(It only takes about 15-20 minutes to walk there) and I kept waking up in the middle of the night in excruciating pain in my entire body. I could barely walk this morning. I have been having the body pain for about 3 weeks straight now. Some days it’s a bit better, but other days it is debilitating. I also experience dizziness and lightheadedness. It gets worse in heat. My symptoms get 100x worse in heat. I don’t know about cold yet though.
    Thank you so much to anyone that actually reads all of this(haha), I know it is EXTREMELY long and I am very sorry about that! I just really could use some advice, that’s all. Thank you again!

    Too young for this

    I am 25 and was just recently diagnosed. Has anyone else been this young with M.S.?

    Looking for Work in Hospitality

    Hi! I’m new to Philly and working as a bartender. I have a pretty impressive pedigree behind the bar, been bartending for almost 20 years- most of it in NYC. I was diagnosed about 10 years ago but my symptoms were manageable until recently. I can’t keep at it much longer: the physicality of carrying ice buckets and cases of beer, long shifts on my feet, and issues with coordination and forgetting cocktail recipes. I’d like to move into a management position with benefits (and the opportunity to sit down occasionally lol). I’m having trouble since I’ve only been in Philly a few months. Can anybody help?

    The Dreaded Normal MRI Results

    The very first MRI I had back in 2009, when my symptoms began, was examined by a neurologist, which he found a “small, nonspecific lesion” and mentioned I should keep a watch on it with future MRIs. My symptoms then started as left-sided, mild hemiparesis and left unilateral paresthesia. I noticed it in my left thigh, and it gradually radiated down to my left leg and up my back to the left arm. Of course, at the time like many others with unilateral hemiparesis/paresthesia, I thought I was having a stroke. The constant “buzz” and weakness persist for several days before dying out and transitioning to a chronic but transient reoccurance of the same symptoms, but albeit very faint in comparison to the episode that lasted several days. This transient buzzing has never stopped since.

    One later in 2010, I experience what I believe was the Lhermitte’s Sign. I was talking to a customer and leaned my head to the right, about 45 degrees, which then triggered a painful electrical shock jolting down my neck and right side. My grimacing and wincing response to the pain was outwardly noticeable, as the customer asked if I was all right. I told them I was fine, of course, even though my neck and side was burning with the aftershock of the jolt. This carries on for about a year every time I tilt my neck in that same position.

    Then, two months ago was the doozy. 6 years after my first episode, I experience what I believe is my second full-blown episode. At first, I believed it was a migraine aura with the whole nausea, faint spots in front of the eyes but not enough to cloud vision entirely, and a tension headache. This builds for an hour until I’m released from class and drive home. As soon as I get in the house the spots get bigger and explode into white. They are becoming so opaque, big, and numerous, that I cannot even see to read my textbook. This continues for an hour before my left side explodes and lights up. This is no longer the ignorable and tolerance faint, transient buzzing. The intensity of the paresthesia has increased to a painful level, and I now begin to notice a clear division between my flaming, electric left side and my normal, unaffected right side — from my scalp to my toes. Realizing that this was no migraine and that it was episode number 2, I begin to write every symptom thereafter.

    As this is already lengthy, I’ll sum that symptom list up. The next day, the total numbness and weakness kicked it. It affects my walking so much I end up with shin splints in my lower left leg within two days. The total numbness and weakness last for two days, and it transitions back into more of the paresthesia. Although every area of my left side was fair game, it kinda came and went like Christmas tree lights set on blink so that a group of lights light up, then fade, then another group lights up, then fades, and so on — several localized areas of my skin “light up” then fade as other areas begin to “light up” and fade just the same. I actually kinda thought this part was pretty interesting and cool, hah! Then after a day of Christmas tree paresthesia, it fades into similar normal transient buzz, but with greater intensity this time — more on pair with the intensity of the first episode.

    And that’s kind of my story. I had a second MRI a year after my first episode, which the radiologist and my primary said was normal. When I told him about the lesion that the neurologist found, he said he didn’t see it. I just had my third MRI done last week, of course because of this 2nd episode, and it was normal as well. I’m still waiting on an appointment with my new primary to cover the specifics, but I can’t help to feel extremely deflated and disappointed at this time, and I’m just so very confused as well. I’m currently in nursing school with a year and a half left, so this second episode is just very inopportune. I had to remediate and come back to perform hands-on skills that I just couldn’t do the first time because my left hand was locking up and the paresthesia flared up so bad that I couldn’t concentrate. I scrawled like a baby to the instructor that day. The whole ordeal was just overwhelmingly mortifying.

    I just dunno where to go from here, and I feel like a hypochondriac talking to most everyone else. The neurologist who found the first lesion is no longer in practice anymore, so it makes things harder surrounding the elusive “small, nonspecific lesion” that no one else seems to find. I think I’m just in need of moral support right now from those that understand, because I’m feeling so defeated and have no idea what direction to take from here. ;{

    Soft velvet skin

    Hi everyone!
    This past 10 months has been a real carnival ride. Can’t get a rule out diagnosis because mid testing my neurologist stopped accepting my insurance.
    As a positive side effect of time waited, a pattern or 2 have shown themselves. My husband noticed an increase in symptoms during my hormone cycle. But the strangest thing…my skin gets so incredibly velvety soft that it’s practically painful to feel it. It almost hurts when it’s touched. I break out with acne more, too, like I’m not letting go of the old skin cells like I should.
    I’m really curious if this is just me? What’s causing this? It’s not normal.

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