Sjogren's Symptoms Vs. Multiple Sclerosis
Jul 23, 2014
I just want a little input from people who have a sjogren's diagnosis. I have a lot of symptoms that my Dr first thought were from MS. I've had all the tests and that's been ruled out. I've had a low positive RA factor for years so the neurologist sent me to a rheumatologist. He thought without swollen joints and no treatment for years after dx that it's not RA. He did more bloodwork and xrays of my hands, feet and chest. I go back to see him Aug 6, so no info yet. My question is do you have these same symptoms? Leg pain, tingling in legs feet and hands, can't tolerate heat, migraines, brain fog, itchy rash on my chest and arms, Epstein Barr virus, leg cramps, b12 and vit d deficiency that I'm taking shots and supplements for and extreme fatigue.
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I have noticed some symptoms that I have developed in recent years that I believe to be symptoms of MS. I am 62, female and concerned that I may have the disease. It's affecting my arm, hand and head and I didn't put it together until I went to a yoga class and it just came to me to check out the symptoms. I have been having tremors, spasms, sometimes painful, in my arm for a few years and it's gotten progressively worse. Last year I noticed my head would shake if my arm was in a certain position. I went to an orthopedist and he said it was due to an old cervical fracture so I let it go. I am going to see my primary doctor and ask for their opinion. But I would like to know if I'm too old to develop MS.
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I've been having MS symptoms for nine months. I've seen three doctors and no one could find anything so I asked to see a neuro which I will do later this month.
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I have mirror image (symmetrical) numbness on my hands and feet every day. I have patches that feel tingly that come and go on various spots on my left side. I often have shaky legs and fingers and feel unsteady.
I have shooting pains in my left arm about once or twice a month and my arms get weak when carrying 2 pounds or greater.
I am a nervous flyer and was prescribed xanax for a cross country flight. Xanax dramatically decreased my numbness and my shaky limbs felt fine.
Would xanax take away my symptoms if I in fact have MS? I also am an avid runner and have been able to keep running through this entire 9 month ordeal. No issues..no fatigue..no leg exhaustion. Would this be possible?
I am writing this post after over 20 years of being worried about getting MS having been around my beloved Mum who has had it since I was 5 (I am now 33).
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As a child I really suffered from bad anxiety, clearly related to my Mum being ill and in pain around me and my parent's relationship very slowly breaking down. This would come and go, but included a lot of missing school, night terrors, panic attacks, feeling ill when nothing really wrong etc. When I was 22-25 it really came to a head and I suffered terrible panic disorder. After months of therapy (talking it out and CBT), it went away and I was able to live my life again. I felt like a new person.
BUT, last year my father left my Mum which was a huge strain on me and more recently my mother has been very ill and in hospital for weeks after a bad relapse. I got extremely stressed travelling to and from the hospital every day and also trying to sort funding, hurry up the social services and hospital nurses that were so overstretched Mum's care was appalling (not their fault, but the NHS cuts) and then I had to sort a new care home for her that would look after her properly with proper nursing.
Anyway, for the past few months I have been having some very scary symptoms and I really want to believe that they are anxiety related and that my nervous system has been under so much stress that it isn't computing properly and me telling myself my worst fear, but I also need to be sensible and realise that my chances of getting MS are higher than the norm having an immediate relative with it. And I suppose I have been thinking about it all my life and I am sure that must have a long lasting effect on people.
I would say that I am experiencing a lot of symptoms all at once, I am not sure if these can occur through pure stress and anxiety as they are so physical! I have spent my whole life not reading about the disease or symptoms, only being around my Mum (lifting her, putting her to bed, sorting district nurse appointments constantly, caring for her during two MS trials she did years ago (which didn't work. Again hugely stressful etc etc) - and I think that reading about it all now would send me off the rails!
My symptoms include tingling in left hand and right leg, headaches, heavy feeling leg that is stiff when I sit down for long periods of time, strained feeling in eyes (recent eye test ok though) constant painful neck (helped by Osteo), light feeling in arm, chest pains, itchy feeling as if bugs crawling on my legs when I lie in bed...
The doctor has checked my blood and all was fine, checked my reflexes and everything seemed OK. I do think I should be referred to a Neuro but I am TERRIFIED.
I have had too much stress and worry and all my friends say I cope so well, but it is just a front, I don't think I can go through with an MRI and the worry of waiting to hear what I think I have expected all my life...to get MS like my Mum.
It all started with the feeling of hot water being poured on my right foot. Started out slowly, then became very frequent and has slowly gotten better - now I only feel a sensation of "heat" pressing on my right foot occasionally. The worst of it lasted nearly 8 months. During that time I also had a worsening of many other symptoms such as: fatigue, horrible tremors, dizziness, nausea (from the dizziness), brain fog, chronic headaches/migraines, weakness in my entire right side, thighs that twitch and "pop" when I get warm, severe muscle cramping, vision changes also when I am warm, and urinary frequency problems. I say worsening because I have had some of these symptoms for years and just blew them off. In fact, I had a period of time about 20 years ago when I believe I was having something like the "ms hug" (really sever and unexplained pain in my ribs), as well as a hot feeling on half of my face, and my neurologist at that time said "you probably have some autoimmune disease that will show up later in life". I've had chronic daily headache and migraines for more than 20 years, and an essential tremor for about 10 years that has worsened lately. I also have an unrelated autoimmune disease, which I have been told makes it more likely that I have another (but which one?!). MS was suspected so...
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I've been seeing a neurologist (and a PCP and a rheumatologist) for these symptoms for a while now and feel like I've had every test under the sun. I've had a normal cbc, sed rate, hemoglobin, basic metabolic panel, tsh, b12, all kinds of vitamin and mineral levels, folate, lyme test, MRI of brain and lumbar spine, MRI of brain, and an EMG. I have not had a c-spine MRI and wondering if there is a reason it was not included in these tests. So far the only thing that has come back was a positive ANA (which I believe is from my other autoimmune thing) and a low vitamin D (23), which fell from a level of 58 in under a year. I've been supplementing for more than 4 months. My neuro did not think that ALL of my symptoms could be from the D. Some, perhaps, but not all. Why does he think this, I don't know!
I recently finished a taper of prednisone and feel like the "fog" has lifted, like my brain is working again - hooray. My main symptoms now seem to be fatigue (it's insane), urinary problems, and some newer problems with my left foot (not the foot I was originally having problems with) - where it will cramp up for days and days (two and a half weeks one time), just like a never ending cramp. When it's not cramping I get feelings of heat, or sometimes just a vibrating feeling. The cramping can be very painful, the "hot" feelings are just strange. I've also now started having problems with jumping/twitching muscles in my left hand and arm (different than my normal tremor). I continue to have some right-side weakness.
So I'm wondering, do these symptoms sound as though they could all be because of the vitamin d? I've got a month until I see the doctor again, and he has been trying to push some meds on me, but I wouldn't want to start something if it's all because of the D. Since supplementing, I have had some improvements in my cognitive symptoms, but not much else.
Lastly, my neuro said he may send me to an MS specialist for a second opinion if I am still having problems next month... but if my MRIs are all clean, then there surely must be a more likely explanation, right? I just don't know why he is so sure that the low d couldn't be causing everything. He said that it was very unlikely because my levels had previously been ok and the severity of my symptoms would more match someone who had been very deficient for a much longer time. Does that sound logical? Would an MS specialist be able to tell me anything new?
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Back in March of this year I ended up heading to the emergency room for this strange numbness feeling that began in my hands and feet and then travelled throughout the rest of my body; it lasted about five or six days and then went away completely. I was in the hospital for four days and while I was there I had a CT, lumbar puncture, and an MRI of my brain, all of which were normal. I ended up with a diagnosis of 'post-viral acroparasthesia' and was told that I would be fine.
However, this numbness came back again a couple weeks later. I went back to the emergency room and they said that it wasn't that out of the ordinary for this happen again but gave me a referral to a neurologist who then ordered three more tests: 1) peripheral nerves, 2) evoked potentials, and 3) an MRI of my spine. I've done the peripheral nerve test and that was normal and I have to wait a bit to go to the other tests. I've also had my blood tested for pretty much everything and it's all been normal.
But throughout all the months that I've been waiting to follow-up with the neuro, the numbness as well as some other strange symptoms keep coming out of nowhere (seemingly) and going away. I get really bad tension headaches, lightheadedness, numbness and tingling, fatigue, frequently urinating (sometimes I wake up four times throughout the night), feel a massive brain fog, and more generally I just feel a great deal of malaise. I usually feel like this for four-five days in a row every couple of weeks and then feel completely fine.
These symptoms are pretty ambiguous but MS is something that I'm pretty worried about. My dad has it and is in the latter stages so the doctor's are considering it a possibility. I've seen quite a few doctors now and they haven't been able really figure this out. The most insightful thing that I have been told is that I could have some type of virus, which sometimes may last for a long period of time, and this might explain why I'm getting sick so frequently. I have just been told that I'm going to have to wait to see the neurologist and have anything neurological ruled out.
Whatever is wrong with me is very frustrating. I'm 22 years old working on my university degree and being sick so frequently has taken a huge tole on my academic performance. Also, financially I'm not doing so great and have been cycling through jobs...I mostly end up quitting or getting fired due to the fact that it's been very hard to work like this; it's really causing me a lot of stress.
Prior to all of this I have been quite healthy. I'm very athletic and go out of my way to eat healthy. I don't drink any alcohol, don't do any drugs, and quit smoking cigarettes back in January.
Anything to suggest? Whatever is happening to me is really messing up my life. I can't afford to be so sick all the time and I feel so desperate to know what's wrong.
I am mid process during the diagnosis (I've had the MRI with and without contrast and get results Monday. I'm currently refusing LP and have the evoked potentials scheduled). If I were to be diagnosed (still hoping not) I have read a lot about being gluten free and that helping with symptoms. As a matter of fact, I may try it regardless of diagnosis to see if it helps. But, has anyone with MS tried it? Did it help?
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I was recently referred to a new neurologist. I saw him this past Friday and really liked him. I have had a lot of test run at this point. Including brain MRI which shows what my doctor called one "MS" lesion and one "ischemic" lesion. I am so confused when it comes to lesions. My new neurologist is scheduling a lumbar puncture and will do a MS panel. He also ordered a copper level. Anyone know the reason behind this? I was curious...I don't think I have ever had a copper level done.
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Just about every time I bend my neck forward I have pain that extends upward to the base of my skull and tingling up my head to envelope mostly the upper left side of my head. I am guessing I am having a relapse. I was unable to see my neurologist as its impossible to get in to see him for months. So a local clinic doctor gave me prednisone. So far it's the only thing helping. I have already been diagnosed with Ms but the only thing I have found is people speaking of Lhermitte's that run down the spine. Do I need a new MRI?
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The neuro scrapped the bottom of my foot and could not get it to jump like it used to. he kept trying but nothing happened. I thought this was important but nothing was said and when I asked my physician, he said this was normal. what's it mean if the foot doesn't react?
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Anyone else here experience extremely cold feet? Last night I was up till 3am because they felt so cold. When I feel them with my hands after repeatedly trying to warm them, they don't feel cold to the touch anymore but still feel cold... It got to the point last night where they were painful. They feel cold all day too though I'm able to ignore it somewhat when I'm walking around and doing other things. At night, it's not something I can ignore and it's keeping me awake. What do you do if you experience this? I should mention I've had numbness in my legs below the knee and feet for sometime now.
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I was diagnosed with RRMS in 2000 in the middle of flare which caused numbness in my face and just a weird feeling when I walked. I have been fortunate not to have experienced too many problems aside from a couple of minor flares and the usual fatigue that goes along with MS.
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Last week I was on my computer and all of a sudden I felt like I was not quite sure what was real...thoughts racing from one thing to another. I kept thinking of things and would immediately wonder if it happened. I finally decided to go the the ER. Doc did a neuro exam and said it was OK. I also thought I had a UTI but urine came back clear. He told me to go home and rest. The next morning when I talked to my daughter she said I sounded weird and it was taking me a long me to explain things. The MS nurse also said my speech seemed a little off and slow. Neurologist was out of town but when he came back he told her to call me to set up an EEG because it could have been a seizure. Since then my hand tremor has been more pronounced and weird little symptoms like twitches and sort of an internal tremor in my legs when I walk. I have the EEG next week and then will see my neuro.
I was just wondering else has had something similar. It was distressing to me because I can't really remember things I am usually right on top of; I couldn't remember my meds (I have a list at least). I felt like I lost time and was not sure how much.
Since doctors don't seem to want to help me figure out what's wrong, I'm trying to investigate my various symptoms to find potential diseases to rule out.
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For the past two and a half years, I've had a problem with frequent urination. No incontinence of any kind, but I tend to pee on average 12-20 times a day. Sometimes I'll be up one or two times at night, sometimes more and sometimes not at all. I DO drink quite a bit of fluid. I tend to average 50-100+ ounces of fluid a day. Usually once a day I'll have a cup of tea, but I don't drink a ton of coffee or any soda at all. I am always thirsty, feel dehydrated all the time, mouth is dry, lips are chapped, light headed and dizzy often, even on the days I'm drinking 100+ ounces of water. I work in an office and don't do anything strenuous that results in sweating. When I do pee, sometimes it's only ten or fifteen minutes before I have to go again. Most of the time, I'm producing a full volume of pee, almost never is it just a few drops or a little bit. My urinalysis and cultures come back normal.
Went to the gynecologist today, he said my bladder is working fine and that when I pee, I am emptying my bladder all the way. His suggestion was to drink less. I'm thinking a 31 year old woman who does not have diabetes or a UTI that's lasted for 2.5 years shouldn't not only have this constant need to pee, but also this constant need to drink and feeling of dehydration. I went to a neuroendocrinologist because I truly believe with my other symptoms, I have some kind of pituitary problem going on (Cushings and/or GHD) but he laughed and blew me off because Hey, it's rare, therefore you don't have it.
Should I ask my PCP about looking into MS? In addition to the frequent urination, I have a great deal of cognitive issues (memory loss / retention problems, concentration problems, shortened attention span, sometimes can't speak properly), depression and anxiety, eye issues (wicked light sensitive, blurry vision, hurts to look up or to the sides), stiff and painful joints and muscles, muscle weakness, occasional tingling in hands or feet, INCREDIBLY fatigued, dizziness and lightheadedness, vertigo, occasional balance issues, and trembling / vibrations in body.
First off my name's Katherine and my mother has Primary Progressive Multiple Sclerosis. and I'm here on her behalf. She's in a wheelchair and in a nursing home. She's of sound mind but here lately she seems to be getting a cold and fever every month or so. I know those with MS has very week immune systems and have a hard time fighting off simple colds . My question is what are some good vitamins to help her keep from getting sick as much?
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I am sitting at work, like always, when all of a sudden.... inside my head (in the top, middle, and behind my forehead) I began to feel what seemed to be a muscle spasm. What? Rationalizing, I think... Our brains are muscles. Right? So it could be a muscle spasm. Whoa... I feel dizzy and lightheaded for a little bit. Now, I feel like my head is full (stuffed full) of cotton or something. It isn't in my ears. It wasn't my eyes. It was "in my head". WOW.
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I experienced this sensation of by brain shaking that was followed by dizziness. The "brain shake" felt like a jolt and then vibration/spasm that lasted about 5 seconds. I feel like the room is spinning and tilting and I was about to fall over (even though I was sitting down). The dizziness lasted about 2 minutes or so. The weird feeling of fullness in my head is still there.
Hi 31 yo female here! In march my Vitamin d was at 10. The DR told me 5000iu daily d3 until further notice.
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One month ago I went to ER and DR for nuerological prolems. Pins and Needles in my extremities that radiate up from feet. Since then it sometimes affects my head and rib areas. I have had a tightness in my ribs that was painful a few times. Trouble with speech, focusing, walking, feet heaviness (after a long day of work), extreme fatigue, migraines (4 in a timeline of 2 weeks), muscle spasms, sharp pains in my head and lower back.
My primary physician referred me to a nuerologist and he has been testing me for MS and TIA, I had 2 MRIS 2 CT scans nerve test all normal, tested for lupus ect. Next week I"ll have blood results from vitamin d (6 months ago 10) again, b12 (6 months ago normal) again, cooper, choloestrol panel (6 months ago 132)
I can't go on like this. I have responsibilities. I need answers! Please sugs!
I'm aged 28 year old female and feel over all fit in myself i go to the gym etc. However for around 3 year's i have had this tingling all over my body. It all started one night when i felt all panicie and just in general detached from life i had night sweats i felt like i was on another planet and it was very very scary from then on i developed this tingling.
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there is not a day that don't have it I'm going out of my mind as I'm sure i have ms i also get other things like twitching,neck grinding,the tingling is worse after exercise the doctors don't seem to think there is anything wrong with me
I have done boxing since i was 16 could this have something to do with it ? i have never been hit hard or anything.
the tingling is sometimes itchy and in wide areas like the top of my leg's,stomach, sometimes it's just in a very small area. it last for 1 sec to 5 sec
I recently started on Tysabri and have had some strange side effects. I have experienced joint pain after every infusion so far. Same thing happened this time except now I have a huge purple bruise on the top of my foot. The foot is painful to put weight on. I went to my PCP today and she noticed a second bruise on the same foot starting to form, this one looking like it may even be bigger. She sent me for an xray which was negative. She also took blood to see if it is a coagulation issue. Has anyone experienced anything like this? My MS doc is aware of the joint pain but the bruising is something new. Should I wait to hear about the lab work or go ahead and call tomorrow just to notify them? I have no idea if this is meds, MS itself or something unrelated.
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I'm 23 and was just diagnosed with MS weeks ago. I still don't really understand all the in depth details of MS, but the more I research the more informed I become. My first question is, what medication would you think is best suitable for someone in my age rage? I'm a very active female, spend my days in school, nights at work and afternoons in the gym and I'm terrified of the thought of my medications keeping me from my day to day life. I was told Rebif has harsh symptoms that can effect me so I already am skeptical (fatigue, migraines, nausea etc) but Copaxone apparently doesn't have as good of a success rate in regards to MRI follow ups sometimes coming back as more lesions?! I only have two tiny ones for now and I'm REALLY hoping it stays this way .
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Second question I have is, does anybody else have any issues with brain fog/lack of focus or concentration on simple tasks whether in the workplace or schooling? This seems to be the only issue for me. Sometimes my train of thought while having the simplest conversation will come to a halt when I forget what point I was trying to make. I mentioned this to my neuro and she said that we can discuss medications to help with that but only after I try out my MS meds first because she doesn't want to fill my body with drugs.
I wasn't able to get anymore info but does anyone here possibly know what medications or what would possibly help this minor yet major setback I've been having?
Sorry for the long posts, I'm just so stressed about all of these thoughts going through my head .
Edit: another question, if someone were to start on medication as soon as it was detected, are they still at risk of disability or mobility issues? Even when I was numb for 3 months I acted as if it wasn't really happening. Still went to the gym and ran my miles I'm just scared next time it wouldn't go as smoothly...
I have a 2 mos old that I am breastfeeding. I am off my copaxone and once I stop BF I will restart it. Just wondering how long others breast fed? Did you have a relapse while breastfeeding and off your meds?
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I was never a big drinker, but lately I can't drink vodka or tequila without immediately getting a headache and pain behind my eyes. I'm talking one, maybe two drinks and I feel miserable. Some beers have the same impact - I always loved a good stout, but now I get a headache before I even finish one. I can no longer go out and enjoy a few drinks with friends. (They love it - built in DD).
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I was diagnosed in 2011 - and this intolerance to alcohol has gotten worse in the past two years. Is there a possibility that MS can cause this??? I can't imagine it would, but not sure what else could be going on.