Sjogren's Syndrome :: Brain Fog And Memory Loss
Feb 6, 2014
I am concerned about my memory, 32 year old, diagnosed when I was 30. Mind goes blank, forget names of people I know. Mentioned this to my consultant and told it's just the tiredness. Mentioned it on another occasion and told I'd have to see my GP. Eventually went to my GP who said they'd never heard of SS causing memory issues but I've had people on the BSSA say they have the same thing. When I went to my GP I was presented with a sheet of paper with tests I felt were embarrassing, both me and my GP agreed I could quite easily pass these but if for any reason I didn't she'd have to refer me to a psychiatrist which she really didn't want to do. I agreed there's nothing wrong with my mental health but I would have thought I'd be referred for a MRI. Why do I get brushed aside - this condition is bad enough without being ignored as well. I'm just about holding onto my full time job. I even go light headed but no one seems to care. I'm now faced with going private, thankfully I have private healthcare through work but not everyone does.
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I was diagnosed with underactive Thyroid 18 months ago by a doctor who was just standing in for my regular doctor, I had been going to the doctors for 2 years with little complaints but nothing was done as I had been on antidepressants. Since starting the Thyroxine 100mg daily I don't feel any better. My doctor even told me depression can do things to the body like the symptoms I am having.
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10 months ago I started a new job 3 months into the job my hands began to swell and I have pains in my fingers the doctors took a blood test but said there was nothing wrong however I saw another doctor at my surgery and she referred me to the hospital rheumatology . The specialist took another blood test as the one my doctor took showed an abnormality, she also sent me for several other tests. Once all the tests where back the specialist diagnosed Sjogren's Syndrome and mild rheumatoid Arthritis in two fingers that don't hurt as much as the others! I have been on Naproxen & Plaquenil for 2 months and due to go back to the specialist in September.
But I still don't feel any better!! and my IBS has become worse. I have changed my doctors practice as I have lost confidence in my previous doctors however I am not sure this new practice will be much better!
I had my first appointment with the doctor I told her my symptoms and for the past 3 weeks I have been in pain with IBS, she concentrated on this problem and stated that I should come back again as "10min appointments were not long enough to go through all the issues I have." Told me to book for another blood test which will be next week.
Long and Short- does anyone else relate or recognise these symptoms?
1. For the past few years I have been having problems with my memory. I forget what people have said to me, forget to lock the door, where I have put things what I was going to do next. I have always been a little scatty but it seems to be getting worse and many times it is only other people reminding me that I realise that I have forgotten or not done something.
2. Lethargy, weary even after just waking up but gets worse around lunch time and by tea time I feel like I should be in bed. I have always slept approx 7-8 hours but I don't feel refreshed after sleep.
3. Painful cramps, wind, constipation I will only go to the toilet if I have Movicol or a few halves of Guinness. My urine is dark and sometimes cloudy
4. Dry Skin and itchy spells where I could scratch the skin off, Dry eyes and mouth
5. Aches and stiffness all over and clicking wrists, elbows,shoulders and knees
I am a 25 year old female and I was diagnosed with Hashimoto's Disease probably around 2012 or so. I take 75MCG every morning and I do blood tests about once or twice a year to make sure my levels are stable. What I need help with are symptoms. My boyfriend has been very supportive, he was the reason I went to get the initial blood test because he said my symptoms reminded him of Graves Disease and it worried him. Well, I went to the doctor and got the tests done and he told me I had Hashimotos. Since then, my boyfriend has told me that he hasn't seen any improvement in my symptoms, in fact he thinks they've gotten worse. I have looked at a lot of different lists of symptoms that people with Hashimoto's Disease can experience and I experience a lot of them. I'll list the ones I experience the most and a little bit of a description to each so maybe someone can help me with what I need to do to feel better because honestly it makes me miserable.
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-Hair Loss - Every time I brush or wash my hair there is always tons of hair in the brush or tub. It's everywhere all the time, I shed like the cats.
- Depression - I don't know if it is actually depression, but a lot of the time I feel like I'm just not good enough to be around anyone. I'll find myself crying at ridiculous moments with absolutely no reason for it. I also find myself thinking that people I know (and can acknowledge even when I'm feeling this way) love and care for me, and yet I still think they don't care about me and will abandon me at the drop of the hat, which breaks me down mentally.
- Stress - This is probably one of my worst symptoms. I am always stressed out about something, even ridiculous things that shouldn't be stressing me out. One of the biggest things I stress about is what I mentioned with the depression. I feel like my friends and loved ones are going to abandon me at any minute, which scares me and results in me lashing out at them in ways that if I can't control it soon enough may result in them actually leaving, which terrifies me and just puts me into a never ending loop of stress and depression.
- Anger - I can't seem to rationalize other people's behaviors. Completely normal behaviors that don't normally bother me result in me lashing out and screaming at people and saying things that I don't mean to say.
- Memory Loss - This is a really bad symptom. I forget things very quickly. If I don't actively keep it in my mind, I won't remember it. A perfect example, when I was still in college I was walking through town with some people and when we were going back to the dorms I made a comment about a truck I saw. I used to see it all the time and hadn't seen it in a while so I made the comment. The people I was with looked at me really confused and just flatly stated "You said the exact same thing when we walked by it on the way out" and I honestly don't remember seeing it at any point that day. In fact I didn't remember seeing it for around 5 months, and yet they claimed that I made the exact same comment I just had, earlier that day. It really messes with my head when people tell me that I did or said something and I can't remember doing it to save my life.
- Weight - Before I started taking synthroid I weighed 110 lbs, after I started taking it I gained like 30 lbs and I can't lose it. I'm stuck between 135 and 140 (I'm about 5'6" tall)
- Headaches - I get headaches on a daily basis. Sometimes they're really bad but generally they're just a slight discomfort in my frontal lobe area.
- Sleep - It takes me forever to fall asleep and even when I do I can't stay asleep and then I feel exhausted all day when I wake up, as if I never slept at all.
Another thing I've noticed and that is that sometimes I feel like I can't swallow properly, I always feel like I have to yawn to get a lung full of oxygen, and my nails curl downward along the curve of the tip of my fingers on like 3/5 fingers.
I have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
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I can not remember what I did in 1996. I have researched my personal papers but nothing can clearly tell me anything concrete.
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Im 19 years old and my memory has gotten real bad. I forget just about everything if someone tells me to do something I forget what they told me the next minute. Or I just forget the whole thing until they bring it back up or ask me again. I always seem to forget important things. Now its kind of affecting me at work if a coworker of mine asks me to do something I always forget. Im constantly lost in space alot. Is this something to worry about or just a really bad memory?
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I am a 61 years old male alcoholic and my memory is very bad. Is this normal?
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So basically I'm a teen girl. Over the past 2 years I have been having these symptoms and they have been more apparent these past days. My anxiety has been raising and there are times when I'm super happy and then a second later I get super depressed. I'll get paranoid and scared of I don't even know. I have terrible memory and can't remember a lot of things. My parents yell at me for not doing things they asked me to do, but I don't even remember. My teacher was crying one day and I smiled at her. I know I shouldn't do that, but that's how I reacted. I'll hear things like whispers and someone saying my name, but that's all. I can't perceive any actual words, just sound. One time I thought someone had said my name and blew into my ear. I've also seen thing that I know aren't there. For a while I just thought to myself everyone has those kind of moments so it's fine. But then yesterday I thought I saw an actual person standing there. I was so scared and told myself is wasn't real and it was gone. Then today I thought I saw a kid in the parking lot, but when I looked again they weren't there. Just like I thought there was something on my friend today, but when I blinked it was gone. I'm so scared now that its going to happen one time and it's not going to be gone after I blink. That one day I'll actually be able to talk to the voices. Then I even question if it was real or just imaginary so many times everyday. They only thing that helps is to listen to music during the day. I'm also losing interest in a bunch of things I used to love. I would also self harm as punishment. I don't even know what for, but I just think I have too. My grandfather has schizophrenia also.
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Having been officially diagnosed with Sjogren's syndrome about a year ago, I think back on ALL the diagnoses I have had related to it: "nutcracker esophagus and severe GERD", "esophageal spasms", polyarthritis, fibrotic lymph nodes, fibromyalgia, Prinzmetal angina, benign parotid tumor excision (trabecular adenoma), dry skin, dry mucous membranes, etc. and now know they are all part of the same syndrome, which has been steadily worsening and becoming more malignant (and I am only sixty). There are many other more serious difficulties, but now I'm wondering if I, too, will get non-Hodgkin's lymphoma, since that is what some people progress into. It is NOT that this frightens me at all--but now there is something of which to be aware (and I'm not certain my M.D. knows of this). I also have glaucoma and cataracts--so I really have to protect my eyes (and I have had a vitreous bleed into one of them).
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My ophthalmologist (a retinologist) placed upper and lower tear duct plugs in my eyes--which has helped, but I still have to use lubrication. Since I am a writer and use the computer extensively, I find it quite hard on the dry eyes. I am extremely careful to drink lots of water and often mix pure fruit juice with my water to avoid calories (sugar) and to make the water more interesting. This does, however, exacerbate my stress incontinence gained after fracturing my back--for which I stay close to a toilet (but my writing is done at home.)
I'm 15 weeks tommorow and my memory is so bad I can't even remember if I took my prenatal in the morning Or what I had for breakfast lol anyone else experience this or am I going crazy ?
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I have always had an issue with forgetting and losing things but it has been getting consistently worse over the past few months and I'm not quite sure who i would speak to. I am only 25 but tend to work very long hours in a stressful job, I'm sure this contributes to my memory loss but i think there might be an underlying reason.
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What seems to happen is when I put an item down i forget it is there and when i leave don't even notice i don't have it.
For example I might be on a train, put my coat on the seat next to me, get to my stop and walk off the train without even noticing I don't have it. I leave laptops and iPads on tables and walk off and its becoming an more regular accurance.
Three weeks ago I noticed my daughter (age 38) could not remember anything from 10 or 15 minutes and kept asking the same questions - She seemed confused. I took her to the hospital and they began running test. After 2 days she was having difficulty standing so I had to help her stand and then she could walk - after 4 days she could not stand or walk at all. Her legs and arms both have some numbness, burning sensations, and pain. The MRI scan shows no issues - they have run MRI, CatScan, EEG, EMG, Muscle Biopsy, Spinal Tap, all sorts of blood work and after three weeks have found nothing except some vitamin deficiency. She still cannot walk and has confusion and short term memory - Has anyone heard of anything like this. Is it possible that is vitamin deficiency?
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I'm 48 and have always been forgetful. In the last year it's gotten worse. Strange things have been happening like:
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** I'm folding laundry, I hold up a shirt to fold it and I go blank, I can't remember what it is, how to fold it.
** I'm telling someone how to spell the word " letter" and say L-E-T as in cat and they say "what?" and I repeat it "T as in cat"
** My toothbrush is grey, my husband's green. I get both toothbrushes out, run water on them and put toothpaste on them. Five minutes later, I can't remember which one is mine, so I wait for my husband to brush his teeth so I know which one is mine.
I've got many more examples...the scariest of which is:
Driving at 5am on an access road, felt like the car turned sidewise, everything went black, when I could see, I realized I was trying to negotiate a curve and I didn't know where I was.
My MRI was looked at by the radiologist and a neurologist. The only thing out of the ordinary was: A few subcortical T2 hyperintensities in both hemispheres-more on the right. Several flair punctate hyperintensities in the occipital lobes bilaterally unchanged from previous exam (2006)
Mild or early age-related microvascular ischemic changes mostly likely account for the few subcortical T2 hyperintensities observed.
My neurologist wants me to have neuropsychological testing done. He says that the MRI does not explain the things that are happening. "something is going on and we can't just attribute it to getter older"
I have a continual tremor..sometimes even in my head (I take lithium..probably a side effect). Had a 6 month experience of some kind of neuropathy in my left arm last year. Just recently developed numbness, tingling, and burning in my right hand and now it's in the left hand too. I have headaches most every day..some are very short. I'm also on a lot of medications.
My question, if the MRI isn't showing anything what could the testing show besides memory loss/approaching dementia?
My mother had her thyroid and a benign tumour removed about 6 months ago. She lives 3 hours away from me, so I have seen her a few times but only for short intervals and we regularly speak on the phone. Since her operation I have noticed she is always tired (also due to her heart medication) and that she has become more of a glass half empty type of person. Recently my father had a heart attack (serious but my Dad is a trooper and is now recovering after surgery). I have spent the last week with my mother, and with her thyroid and stress of my father I became her personal punching bag. Her erratic mood swings, outbursts and obsessing over trivial matters are well documented relating to the thyroid in all the googling I have done. What I can't find is any information on her memory loss/memory distortion of the facts. To give 2 examples (of many): 1. My parents had a lawyer at the hospital to update their will, so I went out and sat in the foyer. I was on my phone looking at Facebook to fill in time and one of Mum's friends sat beside me. I put my phone away and chatted to her friend. On the way home Mum had a go a me because her friend told her that I spent the whole time looking at my phone whilst she was trying to talk to me. 2. After leaving my niece's 21st, my Mum tells me that one of my brothers was very cold to her all night and didn't talk to her. A couple of hours later as everyone is heading off to bed, my mother says "So (my brother) didn't talk to you either" with which I replied "Yes we did, I spent quite a lot of time talking to him". My mother than lost it completely and started yelling that I had told her that my brother didn't speak to me. Though I can't find any information about this type of memory loss, I am hoping someone might be able to give me a heads up. Also if someone has been told by a family member about their erratic emotions I would love to hear your advice on how to bring it up with my mother.
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Been in a relationship with a bipolar disorder person ( i believe) and after a while into the relationship , she has the notion of hurting me in the situation when she is very much emotionally involved with me as in romance etc. Seems like she loses herself and starts scratching me . i kind of ignored earlier but when i wake her up kinda thing she completes looks puzzle and asks me dis she hurt me kinda thing. She also did mention lets breakup coz its gonna get worst then this but i must admit i was adamant and was sure i can find a solution for this and we can be happy together. Then came a point whereby she went through the same episode and woke to ask me did she stab me and when realized no, she went on saying this has to stop kinda thing since next she will go to suicidal mode etc. She also went on i just cant be as normal anymore to you since my mind has already shutting u down. That evening when i got in touch with her , she told me that its happening and she was somewhere alone in her office not sure what she was trying to do neither any recollection how she got there. She was infact awaken by the cleaner lady thankfully she said. She said "i love u more then my life" to me and that's the problem . The next day when i got in touch with her , she acted as though she has no recollection of what we had in between and she seems to have memory loss on all the places and events that she has been and was with me. She even started calling me by my real name instead of dear or darling how she used to. She is also doing her studies now, and i'm confused to whether to help her to recall things that we had in the past or let it be as not to distract her from her studies and help her to recollect once she is done with her studies and then seek medical help so that we can be on track again.
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So a couple nights ago I drank and can't remember part of the night. The funny thing is usually when I get drunk a trip n fall and that type of stuff and remember it fine. I wasn't drunk enough to be doing that but the whole night is hazy. And I guess I tried to have a conversation with a buddy's mom and I don't remember it. The bad thing is there are thoughts and feelings I have that I hope I didn't tell her about and I'm afraid I did. I'm to chicken to ask. I kept on telling them I wasn't drunk. I also remember thinking this is my last beer and I'm done but I'm pretty sure I drank more after that. All the people that I was drinking with say I was very drunk. And I just can't remember. I know my drink wasn't spiked or anything. But I'm also told my husband wanted me to go to bed and I didn't want to don't remember that either. I did start drinking on an empty stomach. But then I ate after about 2 beers.
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My question how to prevent future memory loss cause sometimes it happens sometimes it does. And why. And does anyone think I would have said embarrassing things to the buddy's mom
Ps I'm not an alchohalic And I'm of legal drinking age and a responsible adult 90 percent of the time
I have a few problems I would like to ask about as I'm unsure if it's just me or not? The first one being my short term memory isn't very good at all, for example if I get asked to do something if I don't write it down I forget very quickly,another problem I have is my sense of direction it's bad. I can go somewhere (through to town) but I can't seem to memorise my way around. I'm now 29 and used to go with my friend every other weekend, no matter how many times we went I couldn't and still can't remember my way around. I hope what I've written makes sense and like I said I'd like to find out if it's a related problem to cerebral palsy or not.
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I have been on 50MG of losartan for around 5 months. The worst side effect was sleepiness and memory loss. I started taking it at night because i was sleepy all day. This worked well for a while. lowered my BP from 160/94 to 138/80 . Sleepiness wore off then came back with a vengeance. Memory loss was awful. I went to see my Dr. and we decided to try and half my dose. I still take at night. it really puts me to sleep. This has been about 2 weeks. The last couple days have been strange. I feel depressed and fatigued and my mind is cloudy. Very difficult to concentrate. It's worse in the morning and seems to improve as the day goes on. The thing is, I'm not positive it's the meds, and not my anxiety creeping in. I'm considering quitting the losartan all together and seeing what happens. Since starting the losartan, I have lost 22 lbs, am eating better, and exercising. My BP this morning was 145/85 . I will take it again this evening.
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I have really bad memory I cant remember almost anything I learned in university after 4 years. Is this normal? I am at a loss.. I cant really get a job in my field of social work because I have forgotten everything and would bomb any interview. This seems strange to me... I have gotten acceptances to complete a masters degree but I am wondering what the point of going back to school is if I will just forget everything. Any advice?
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I am a 57 yr old male not currently on any medication. I have recently been having very short term memory loss.By recently I mean the last several weeks. For example I needed to move my sons car. I walk into the house to get the keys. By the time I walk into the house I have forgotten why I went in. I have to pause for a few moments to think why I came into the house. That is just one example. This happens to me many times a day. At work I need another tool from my truck or tool bag. I move across the room to my tool bag or walk to my truck and I have to think what I needed. I mean, I have forgotten what I needed within seconds of moving to get the object. This is becoming very annoying. Can diet have anything to do with this. I don't often get to eat breakfast and just something quick for lunch. Though I do have a full dinner. Although this happens whether I have eaten or not. I am planning on calling my doctor this week to see if he can point me in a direction for help but I was just very curious to see what people had to say about this and whether they have had any of these problems also.
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I'm 19 years old . First time I ever smoked hash was when i was 17 years old i didn't like it very much as my life was perfect and enjoyed and absolutely loved being normal . i did not smoke again the rest of the year and then started smoking with m cousins occasionally for 2 - 3 months usually once in a week or once in 2 weeks then we all decided not to smoke and we all quit but this year had been a complete mess i smoked a joint when it was my best friends birthday 23rd january this year and from that moment on wards is smoked alot started from once a week and ended up smoking every day in summers for about 2 months with some unexpected gaps such as on a family vacation any ways for a month or so i have successfully cut back on the use by noting down the frequency of the use and now i take 3 to 4 puffs a week i have noticed that it did not cause any major problems for me besides i fell my memory is slightly of and the attention is a little weak but the most prominent problem is i'm not as energized as i used to be . i want hash to be completely gone from my life and how long it takes to my brain be completely back to normal and secondly it affected my skin badly its pale now and the youth seemed to be succked out of it with dark circles around my eyes and its making me depressed please just give me a timeline or just an idea of how long it will take me to recover from this so i can keep my self motivated.
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