Hi everyone! This is my first post here. I have been having “odd” sensations/symptoms for the past 8 years. I have had multiple diagnosis…menieres disease, fibromyalgia, posterior scleritis, low vitamin D… etc. I am still sitting here and the doctors disagree and think there is more. I get “flare up’s” where symptoms come and stay for awhile about a month or so give or take and then disapear. I do of course have symptoms that linger (bowel incontience, severe charlie horse foot cramps without my feet looking funny) about two months ago I hit a bad patch of a flare that left me completely blind in one eye while standing in the middle of the store shopping. prior to the vision loss i had been expeiencing blurred vision and double vision. the vision came back with a hour and i went home. next day went to bed woke up in the middle of the night with this HUGE spot (size of a car) that was a black hole more or less, the neuro said it was a scatoma? He said you must be having migraines.? what! my optho didn’t agree, my vision that week went from 20/20 to 20/80 and she COULD NOT refract me back to 20/20 at all!!! I was loosing my vision!! my GP said i needed a new neurologist. I had all along with this tingling sensations im my arms/hands. I then had an electric shock sensations from my head/neck into my back that left me where i couldn’t turn my head to the right for about 6 plus hours. then a few weeks like this stange bit of symptoms went away. Before this i had my first “eye flare” in 2008 where after 4 eye doctors I had something called Posterior Scleritis and took steroid eye drops to clear it up. They did visual field testing and determined i have VF defect and then VEP’s (visual evoked potentials) when was delayed/abnormal. I was also hospitalized last year for what they diagnosed me with Menieres Disease (i had a severe vertigo attack) i couldnt walk felt like i was severely drunk for a whole day. went away never came back. Now currently I am having this Burning sensation in my hands off and on, like they were dipped in hot wax. I also get a severe squeezing/pressure that has that hot wax type burning in my chest and sometimes it goes up and down my arms and other times down my thighs to my knees. It dosent seem to matter what i am doing walking/standing/sitting its pretty random. The first time i thought i was having a heart attack…test was negative. They also checked my aorta for a tear, all normal, all very reassuring thankfully. But they still dont know what wrong with me. I have had testing done…colonoscopy for the incontience normal (but was not having the symptoms during the time testing was done?)…endoscopy (upper) showed chronic inactive gastritis. My C-Reactive Protein was elevated, a test that shows inflammation.I had a brain MRI (without contrast) showed I have Chiari Malformation. My GP mentioned this may be MS or it may not be. He says its deff neurological. Is there anyone else here in Limboland with me? Whats your story? I’d love to hear it
Hi Ladybug and welcome to the forum,
Im sorry to hear how many problems you have been having, I have not been dx’d yet either and feel somewhat in limboland.
Like you I have had a colonoscopy recently which was due to lower stomach pain/cramps and to detect the location of a bleed which was never found. Its really frustrating. I also have had vision problems (though nothing as serious as you) and memory/thinking problems, I get burning sensations but in my legs and have had numerous other issues with my hands and legs, physio has been really helpful and encouraged me to keep persisting for answers.
I could be here all day listing the amount of things I have had happen or go wrong symptom wise in the last year or two, its taken me a year just to get to the point of GP referring me to neuro and feels like Im in for a long journey ahead. Im at the point Im terrified what they are going to diagnose me with but at the same time terrified that they dont diagnose me at all!
Karen xx
Hi I am sorry to hear your plight and I can see so many similarities with mine which has been going on for at least 20 years, that is the earliest I can trace it back too. Very similar issues and no diagnosis - Simply treat the symptoms as they occur. All I am told is an ‘unclassified, rare and complex auto-immune disease’. It never leaves me and each day is a battle to overcome the symptoms that present themselves. During times of flare up, like now, inflammation and fluid in the eye, heart and lungs, It breaks my motivation and routine making recovery slow and arduous. Suffering in silence is sometimes a way of life not wanting to drag others down, give into it or even admit to myself the extent of my condition. Makes other stresses of life, no matter how small more significant and difficult to manage. Lovely to hear from you, I too am new to this forum only registering last week after an awful attack and feeling lost. Told to rest by caring folk, but taking high dose steroids that prevent any rest or sleep for extended periods of time. People mean well but I fear do not understand which can at times add to my frustration, sense of loneliness and feelings of going mad with one problem after another. Happy to chat to an understanding other
Hi Ladybug,
I too have had problems with sensory organs as part of my symptoms. My eyesight has been deteriating for the past 18 months its worrying. When it gets worse it follows a bout of blurry vision. I lost my sight temperarly on a few occasions too and it came with double vision. Its scary when your out and about, so I have stopped driving. Optician thought it maybe a migraine in my eye.s but I do not have headache’s with it. I only needed a slight change in glass’s to read 18 months ago, but now need bi-foculs for reading and computor work {I have had the lense’s made stronger at least 4 times now) plus I suddenly now need glass’s for long sighted too after the last attack of sudden temparory loss of eyesight last December. I have also at the same time been loosing my hearing mainly only on one side, and its virtually gone alltogether now,I have been given a very strong hearing aid which gives me some hearing. After a very bad episode of Vertigo last Ocotober and dizziness and balance issue’s since, I was also given diagnosis of Meneire’s desease too by GP. Audiology wanted me to see ENT but my GP refused because I have already had MRI scans that showed not tuma’s.
I hope you get answers soon xx
Hi, like me you`re fed up!
My problems began in 1998…age 45…falling mainly due to drop foot. I also had leg and arm spasms. Rigidity in my legs came a little later. For several years, I presented as typical PPMS.
After a year of falls and family urging me to see my GP, I was told there was a 10 month waiting list to see a neuro. So I paid £175 to see one privately and then another £25 for the results of an MRI. He examine and questioned me for an hour and ame up with this jewel;
There is defintely something seriously wrong with your left leg, there are signs of the same problem in your right. I dont know what it is, but it wont get better.
Isnt that a doozy of a statement?
Over the years, this followed with 3 more MRIs 2 LPs, EMGs, a VEP and oodles of blood tests…nothing showed any abnormality!
I dont want to bore you with too many details, so I`ll cut the rest of story short and just give you the jist of where I am now.
After being mis-diagnosed with PPMS for 7 years, my current dx is;
spastic paraparesis/cause unknown/possibly genetic.
luv Pollxx