Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
I have been having problems for over 2 years now. I have had MRIs, lots of blood work, thyroid function, gallbladder, CT, Lumbar Puncture. Nothing showing on these tests. I continue to have problems but I do not have a definitive diagnosis & have not had a good experience with the 3 neurologists I have been to. Some of my symptoms are continuous and some come & go. Just last week I went for a vng test & do not yet have full results but was told I have inner ear nerve damage.
These are the symptoms I have had for the long term. Vertigo, fatigue, weak arms, right eye bulging, shaky vision, blurry, floaters seen in lights, right ear spasm (fluttering) feedback w/loud noises, tongue fascillation, constant jaw tremor/teeth chattering, right throat feels swollen, right facial numbness, tip of tongue points slightly to the right, right corner of mouth slightly drooped, right hand diminished feeling, pinkie gets hot when other fingers cold, tingling sensation, right foot plantar fasciitis, ibs, uh, anal charlie horses.... I'm sure there are others but that's what I can think of right now.
This has been very frustrating because when you look at me you can't tell I have all of this going on unless I complain about it but I choose not to because when I do people say the wrong things & my feelings get hurt. This has made me feel very closed off from the world. I don't know anyone else going through things like this & sometimes people around me (including my doctors) make me feel like I'm crazy. I want so badly to get better so I can go back to my old self. This has effected my kids, husband, work, my friends & feeling of well being.
Has anyone had similar symptoms & a diagnosis or advise for me? I am hopeful that I will find the right doctor who listens and puts it all together. Until then I will be patient & live my life the best I can.
Sorry for the long post but I had to get this out.
These are the symptoms I have had for the long term. Vertigo, fatigue, weak arms, right eye bulging, shaky vision, blurry, floaters seen in lights, right ear spasm (fluttering) feedback w/loud noises, tongue fascillation, constant jaw tremor/teeth chattering, right throat feels swollen, right facial numbness, tip of tongue points slightly to the right, right corner of mouth slightly drooped, right hand diminished feeling, pinkie gets hot when other fingers cold, tingling sensation, right foot plantar fasciitis, ibs, uh, anal charlie horses.... I'm sure there are others but that's what I can think of right now.
This has been very frustrating because when you look at me you can't tell I have all of this going on unless I complain about it but I choose not to because when I do people say the wrong things & my feelings get hurt. This has made me feel very closed off from the world. I don't know anyone else going through things like this & sometimes people around me (including my doctors) make me feel like I'm crazy. I want so badly to get better so I can go back to my old self. This has effected my kids, husband, work, my friends & feeling of well being.
Has anyone had similar symptoms & a diagnosis or advise for me? I am hopeful that I will find the right doctor who listens and puts it all together. Until then I will be patient & live my life the best I can.
Sorry for the long post but I had to get this out.
Hi there: have been having issues with l'hermittes (which was also triggering veritgo and facial numbness), headaches, leg spasms and weakness, weird burnt skin feeling, and fatigue. MRI of brain came back clean but LP showed elevated tcells. Under watch of Neuro but nothing definitive. All she said is that I don't have MS now, but that that doesn't mean I won't have it in the future.
I think that about sums it up :)
Cutie
I think that about sums it up :)
Cutie
Hello fellow Limbo landers!
I found this forum in my quest for more info regarding my symptons and while waiting for neuro appts.
It started 4 years ago when I injured my right foot - 3 ortho's told me I had torn tendons and that without surgery it would not get better - severe foot drop. Finally the 4th opinion said they thought it was a neuro problem since my left leg is now weak and I have balance issues and walking issues - my legs feel like lead weights! So now I am waiting for new MRI's to be done and just trying to hang on to my sanity since I hate not being able to do anything for myself! Also have Thyroid issues so between neuro appts, MRI's and The endocronologist all I do is go to Drs! And I am never sick - haven't had so much as a cold in over 7 years - So that's my story - and I am thankful I found you all! It is a godsend to have others out there who deal with this every day like I do - cause unless you are going thru it you may say you understand but you really don't!
Take Care
Tracy
I found this forum in my quest for more info regarding my symptons and while waiting for neuro appts.
It started 4 years ago when I injured my right foot - 3 ortho's told me I had torn tendons and that without surgery it would not get better - severe foot drop. Finally the 4th opinion said they thought it was a neuro problem since my left leg is now weak and I have balance issues and walking issues - my legs feel like lead weights! So now I am waiting for new MRI's to be done and just trying to hang on to my sanity since I hate not being able to do anything for myself! Also have Thyroid issues so between neuro appts, MRI's and The endocronologist all I do is go to Drs! And I am never sick - haven't had so much as a cold in over 7 years - So that's my story - and I am thankful I found you all! It is a godsend to have others out there who deal with this every day like I do - cause unless you are going thru it you may say you understand but you really don't!
Take Care
Tracy
No ANSWERS,
I still have a few weeks before I get all my results from the sjogrens study.
I am going to yet another neuro.......I so fear this I fear that It will be a waste of time and just one more person making me feel dumb.
AND im always conflicted on how to present myself, when I talk about my symptoms it makes me want to cry. FEARFUL that I will be seen as emotional I pull it in so far that I may come off as flat.
Please let me know should I just let myself cry?
I do hate this
I still have a few weeks before I get all my results from the sjogrens study.
I am going to yet another neuro.......I so fear this I fear that It will be a waste of time and just one more person making me feel dumb.
AND im always conflicted on how to present myself, when I talk about my symptoms it makes me want to cry. FEARFUL that I will be seen as emotional I pull it in so far that I may come off as flat.
Please let me know should I just let myself cry?
I do hate this
WOW,
I am so sorry you are going through all of this..Thank God you got testing for Sjogrens..any answer yet?
Have you sought another opinion from another neuro?
Jibs..
I am so sorry you are going through all of this..Thank God you got testing for Sjogrens..any answer yet?
Have you sought another opinion from another neuro?
Jibs..
Hello fellow limbos,
Im too am in limbo for about 3 years and getting no where. I will tell my story as well starting with my history.
32 yr female no major health problems. As a young child suffered with headaches, my mom states they started before I could talk. about 9yr began with headach so severe that they were debilitating. No doctors then believed child had migrains and never vomited with them. Even as an adult never diagnosed with migrains.
Also as a child frequent syncopy usually positional. as a child I spent more days with headaches than with out. As a teenager began snycopal episodes related to going into buildings that felt very warm to me. Even in my 20's first day on the job not even 1 hour into it completely out head bounced on the counter and then fell straight back. sent to ER nothing found after being monitored for 4-6 hours.
I have 2 children 13 and 6, with basically no complications. In 2005 had a sever allergic reaction 1 big hive, on predisone for 2 weeks. It seemed like I was never the same. 6-8 months was still noticing malaise.
2008 Developed what I thought was earlie s/s of flue, knowing I had to work got in to see my primary, gave me tamaflue, took 1 dose out cold for 12+ hours woke up feeling disoriented extremely weak, gave it a few days no improvement and no further s/s of the flue went back.
At this point sent for a full lab work up cbc, metabolic, all normal, then more labs lyme and any guillian ALL of it he tested for, sent for sleep study
All labs normal sleep study showed a central hypopeania with about 15 awakings, suggested to increase my trileptal ( which was started for mood swings, mild),
At this point still unable to function, on bad days too weak to hold a remote to change channels and scarred to drink to much, fearfull that I would be unable to walk to the bathroom. On good days short trips out of the house with lots of rest periods, nothing like going to nthe grocery store.
Having tremors difficulty with fine motor movements like putting a key in a lock, started stuttering, just felt like my body didnt want to listen to what I wanted it to do. trouble with concentration, finding my words, this all lasted about 6 weeks with really bad days and not so bad days.Even talking the best I could do was a few 2-5 word sentances, so trying to explain I would get frustrated. I also had an irritable bladder what I call it. I would pee no prob, if I walked into the bathroom or turned on water even 2 min. later I would just about pee my pants, well I did a few times. This all scared me soo much
After my pcp rulled out all common ailments sent me to a neuro, MRI showed 4 white matter lessions, bilateral occipital and frontal lobes. With this both of us feared ms and sent me to stanford
Stanford MRI head and neck nothing new same lessions, LP clear, blood work pos for sjogrens, Yeah for you dry mouth no treament needed just manage dry mouth and eyes with over the counter.
At this time my pcp left the practice to go to kiaser for more money. eventually sought out a rheumy, didnt even look at me looked at my labs and said nope not sjogrens. I pushed the issue and said I could have an painful lip biopsy, but not needed because my lab work is a false pos for sjogrens.
I then dropped the issue for about 2 years with only mild episodes lasting a day or two. Durring those I would feel tired, try to workout for 20min and become completely wiped out and beg someone to pick the kids up from school, Im a single mom. So when Im down it all falls apart.
Recenty back in the fight I woke up one morning walking like on a ship in a storm, thank gooness for the walls in my hall or I would have had a bad fall. No stuttering but my body feels heavy and its like it doesnt want to do what I need it to. Like it take more concentration to walk, pick things up, feel like my movements are jerky and stiff, hands are clumsy. I feel fatigue but not sleepy.
Most recent nuero told me after an MRI with no changes that its probably anxiety.
THANKS TO BINKS I got into a sjogrens study at UCSF and awaiting results
WOW sorry everyone that was complete ramble, SO sorry about the spelling between my stumbling fingers and lately even simple words the spelling seem to miss me.
I dont even care for a diagnosis I just want someone on my side to help me with this war thats happening inside my body, I feel like my life is slipping away and I dont want to sit back and let it without a fight.
I do have othe r s/s like numbness and tingling in my legs and arms, water dripping when its dry, sharp stabbing pains.
Thanks to anyone who reads this!
Im too am in limbo for about 3 years and getting no where. I will tell my story as well starting with my history.
32 yr female no major health problems. As a young child suffered with headaches, my mom states they started before I could talk. about 9yr began with headach so severe that they were debilitating. No doctors then believed child had migrains and never vomited with them. Even as an adult never diagnosed with migrains.
Also as a child frequent syncopy usually positional. as a child I spent more days with headaches than with out. As a teenager began snycopal episodes related to going into buildings that felt very warm to me. Even in my 20's first day on the job not even 1 hour into it completely out head bounced on the counter and then fell straight back. sent to ER nothing found after being monitored for 4-6 hours.
I have 2 children 13 and 6, with basically no complications. In 2005 had a sever allergic reaction 1 big hive, on predisone for 2 weeks. It seemed like I was never the same. 6-8 months was still noticing malaise.
2008 Developed what I thought was earlie s/s of flue, knowing I had to work got in to see my primary, gave me tamaflue, took 1 dose out cold for 12+ hours woke up feeling disoriented extremely weak, gave it a few days no improvement and no further s/s of the flue went back.
At this point sent for a full lab work up cbc, metabolic, all normal, then more labs lyme and any guillian ALL of it he tested for, sent for sleep study
All labs normal sleep study showed a central hypopeania with about 15 awakings, suggested to increase my trileptal ( which was started for mood swings, mild),
At this point still unable to function, on bad days too weak to hold a remote to change channels and scarred to drink to much, fearfull that I would be unable to walk to the bathroom. On good days short trips out of the house with lots of rest periods, nothing like going to nthe grocery store.
Having tremors difficulty with fine motor movements like putting a key in a lock, started stuttering, just felt like my body didnt want to listen to what I wanted it to do. trouble with concentration, finding my words, this all lasted about 6 weeks with really bad days and not so bad days.Even talking the best I could do was a few 2-5 word sentances, so trying to explain I would get frustrated. I also had an irritable bladder what I call it. I would pee no prob, if I walked into the bathroom or turned on water even 2 min. later I would just about pee my pants, well I did a few times. This all scared me soo much
After my pcp rulled out all common ailments sent me to a neuro, MRI showed 4 white matter lessions, bilateral occipital and frontal lobes. With this both of us feared ms and sent me to stanford
Stanford MRI head and neck nothing new same lessions, LP clear, blood work pos for sjogrens, Yeah for you dry mouth no treament needed just manage dry mouth and eyes with over the counter.
At this time my pcp left the practice to go to kiaser for more money. eventually sought out a rheumy, didnt even look at me looked at my labs and said nope not sjogrens. I pushed the issue and said I could have an painful lip biopsy, but not needed because my lab work is a false pos for sjogrens.
I then dropped the issue for about 2 years with only mild episodes lasting a day or two. Durring those I would feel tired, try to workout for 20min and become completely wiped out and beg someone to pick the kids up from school, Im a single mom. So when Im down it all falls apart.
Recenty back in the fight I woke up one morning walking like on a ship in a storm, thank gooness for the walls in my hall or I would have had a bad fall. No stuttering but my body feels heavy and its like it doesnt want to do what I need it to. Like it take more concentration to walk, pick things up, feel like my movements are jerky and stiff, hands are clumsy. I feel fatigue but not sleepy.
Most recent nuero told me after an MRI with no changes that its probably anxiety.
THANKS TO BINKS I got into a sjogrens study at UCSF and awaiting results
WOW sorry everyone that was complete ramble, SO sorry about the spelling between my stumbling fingers and lately even simple words the spelling seem to miss me.
I dont even care for a diagnosis I just want someone on my side to help me with this war thats happening inside my body, I feel like my life is slipping away and I dont want to sit back and let it without a fight.
I do have othe r s/s like numbness and tingling in my legs and arms, water dripping when its dry, sharp stabbing pains.
Thanks to anyone who reads this!
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
