Hope you can help? New to all this! Went to see a Rheumatologist about 8 weeks ago, who said I had Raynards, but something else going on, blood tests had shown some sort of auto immune problem. Took loads more bloods and suggested I see a Neurologist and suggest I may need an MRI. Went to opticians last week as getting blurred vision and double vision and feeling dizzy. He said my left eyelid had dropped and my left pupil smaller than right. Also my squint, which I have had for 38 years had changed direction! He seemed pleased that I was seeing Neuro but gave me a letter to give to my Gp, for a referral to see a Opthamologist. My father had Optical neuritis which prompted me to see optician and my sister has MS. Seen Neurologist today and he has ordered a head and spine MRI the referral says looking for ‘demyelinating disease’ Been told could be 6 weeks before scan and then 2 weeks for results. Not been myself for 6 months, my brain is all over the place, can’t think straight! Fatigue is horrible and my memory a mess, went to post office in my slippers the other day, when I came back, I told my children, look I forgot I still had my er pyjamas on, I ment to say slippers! Any ideas on how to survive the next few months, before someone is willing to comit to a diagnosis? Thanks
Hiya…I have to say limboland is the hardest place to be,and I’m sorry that it is unlikely that anything will happen quickly.
The fact that you have quickly seen a neuro who has ordered scans is by many peoples experiences a miracle,the flipside for you must be very alarming.
Having your eyes tested properly is a good thing as it will mean proper treatment if appropriate and I am sorry to say may prove helpful for your neuro in making a diagnosis as Im sure you know,many people with ms do have optic neuritis.
I am sure you know because of your sister, that diagnosis is mainly a process of eliminating other things that mimic ms which is why it is often a long drawn out process,however you do seem to be a fair way down the road.
As to coping mechanisms I am afraid that is a case of what works for you. The society has literature on coping with fatigue and cognitive problems that are worth a read.
I have post it notes everywhere,tell everyone to remind me of things,have pill alarms and pills in a box as I got to the stage of not remembering if I had taken them or not etc
The main thing is you have had a shock and need time to prepare for the possibility of ms.Fatigue cant be fought you have to learn your limits and stop to rest before you get there.
You are not alone either because there are alot of us here that can support you through whatever happens.
Take care Pip
Hi Apple Pad,
My journey (funnily enough) started Raynauds about 4 years ago. Never made the connection until you mentioned it.
My numbness and tremor started 2.5 years, at first they thought I’d had a stroke! I’ve had 1 x CT, 9 x MRIs, electic nerve testing and a lumbar puncture (along with various prodding) and finally got my DX last month. So I totally get limbo land.
You’re already seeing a neuro which is great- took me a year to get that appointment! So you just need to reassure yourself that you’re on the right path and you’re getting the tests you need.
If it is MS (and I say IF as lots of things have similar symptoms) it’s not that someone isn’t willing to give you the dx it’s that to fall into the MS box you have to satisfy a criteria which include demylinisation in spine AND brain, positive spinal tap for oligonclonal banding and had two relapses. Until all boxes are ticked you are in limboland along with a good chunk of the members on here.
At the beginning I remember thinking “I can’t cope with this”, but we do. Life goes on and we do cope. Just allow it to sink in as it is a shock and you will go through a whole range of emotions. Then brush yourself off and plod on and rememebr there’s a solution to most MS problems as Pip says; forgetful-post its, can’t do laces- slip ons… if you’re tired though you must rest or tomorrow will be worse.
And don’t worry about the pjs- I came to work one day wearing my dressing gown as a coat. Oh and in my house if you don’t know the words for something (cuz my brain’s gooey) it’s called a doofer! Other half quickly caught on.
Most of all know that everyone on this site is here for you and always willing to listen and offer support xxx
Hi Apple Ipad
I’ve been in limboland for the last 7 months so I understand the difficulties with waiting.
Everyone has there own individual way to cope. I found this forum and trying to help myself every which way I could kept me focused and in control.
I’ve tried to dance and do yoga to reduce the pain from spasticity. I’ve tried also not to let it take over my life so very few friends know about my situation and I’ve only just told my parents as I didn’t want everyone to be fussing or treating me any different.
I’ve tried to focus on the goals I want to achieve baring in mind I do have to take things a little slower at times; I want to write a book, complete my research and buy a home with my partner and I’m determined not to let MS or whatever it is I’ve got stop me even if it takes that little bit longer. Not to say I don’t have days where I do feel low.
Find what works for you and obviously any questions or support you need we’re all here.
Had a really bad night, woke several times to go to the loo. But worse thing was my legs! I have had some slight twitching in bed before, but this was my legged king several inches off the bed! Is this normal! Had numbness in my arm and hand/fingers and am always tripping over nothing, but does this mean it’s moving to my legs? Sciatica pain in my left leg now.
heya…welcome to the site…we all feel for you inlimbiland but we are here to support you as well. it’s good you’ve had your ees checked…I have recently had ON as well although brain MRI didn’t show any ms lesions, there was a lesion on my optic nerve. I am still getti g over my on which was in left eye but my right eye has always had a squint, since start of on left eye went lazy and right not after 40 odd yrs…the eye neuros told me is was my brains way of tring to cope with the loss of vision and it may or may not swap back. I have similar symptoms as you re legs and brain fog too and fatigue…so many can identify with you…whether its ms is another thing, I am waiting to see a. be urolgyst too…as sone things are not right with me and cannot all beput down to a road accident I had in 1994 coping with the waiting is not easy but your neuro sounds thorough and you will get the answers you need, in the meantime see your go re leg ppain ask for a neuro physio referral,any help ou can get now will be good. please pop on here anytime and hope we can all help these next few weeks a little easer for ou e, x.
I was also told I have reynaud’s syndrome about 5 years ago, but like the poster above, I never made any connection until I was reading your post. I found out when my daughter was born. It’s somewhat embarassing to admit, but I was diagnosed with reynaud’s syndrome of the nipples (found out because I was nursing my daughter at the time) and also fingertips.
Anyway, I want to say hello and encourage you that although being stuck not knowing is never nice, it’s a positive sign that you have already seen a neurologist. Sometimes it can take AGES (I’m still waiting) to even be seen. You’re now 1 step closer.
One day at a time… Best of luck for everything.
Yesterday I got my eye appointment at the hospital through, it’s in a month, also letter asking me to ring up to see Rheumatoligist again, 3 month review. Neuro wants to see me again in 6 months, guess it could take this long to bring all results together? Being in limbo for another 6 months is not pleasant and know I might not even know for sure then? How do you stop going mad? My brain is already a mess and I can’t think straight. On the up side, had a better nights sleep, took some herbal sleeping tablets called sleep aid.