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Feeling Lost

Hey everyone this is my first time posting so a bit nervous lol. So i’ll try and keep this as brief as possible! 4 months ago i went “numb” and had tingling /pins & needles from the wasit down. I’d had a similar incident to this a few years ago and had been referred to neurology but had cancelled my appointment - little did i know lol. A week later i went to my GP as i was losing sensation when passing urine and he sent me straight to A&E stating he thought MS or a problem with my spine, at this stage i was also having some difficulty walking. At A&E they thought i had a condition Cauda Equina and sent me for MRI on my lower back. This came back clear and i was sent away saying i was being referred to neurology. My proplems with walking & driving were getting worse so i went back to the GP who did all the relevant blood tests, when these came negative i then decided to pay for a private consultaion.

When i saw neurologist in May he advised me to sign off work, looking back i don 't know how i was managing to still go at that stage and he referred me for an urgent MRI. So i got my MRI and then saw him a couple of weeks later - this was almost 5 weeks ago. My MRI had showed up 5 “spots” as he called them, on my brain and 3 on my spine. He said it was looking like MS but before he could confirm and begin treatment he needed to do a few more blood tests and also wanted me to get a lumbar punture. From an aunt who works in Neurology i have since learnt that my bloods have been returned clear which adds to the diagnosis of MS. My neurologist has just returned from 3 weeks leave so who knows when i’ll get the LP or see him again.

This past week my symtoms have also took a turn for the worse. I’m having problmes with balance and have fell over quite a few times resulting in me hurting my back. My GP has put me on a mild dose of steroids but so far these arent helping. In the middle of all this i’m also trying to buy a house and just got the awful news on Friday that while my payslips show sick pay i’ve no chance of getting a mortgage. I’m at a loss what to do now, do i rush back to work even though i’m not ready or give up on my dream of owning my own house - i currently rent a flat and have real difficulties getting up the stairs.

Also on a more trival matter, one of my best friends is having her hen night in just over a week. The girls going know my situation but i don 't think they have any real concept of what if actually means. I’m so worried how i’m going to cope with this. Being a hen night needles to say there will be drink involved and also walking from bar to bar. Im debating with getting a walking aid but without a definite diagonisis am i jumping the gun and in my vanity am i really ready to use a stick especially on a night like that.

Pheew that feels good to get that of my chest …sorry for the ramble!!

I’m sorry you’re going through all this. I am in limbo land myself and because of a wait list, I don’t get to see a neuro until January. I am feeling pretty frustrated as I’m feeling like I’m falling apart. Hope you are feeling well. <3

I guess that the hen night is this weekend? I hope that it goes well. Personally, I find that using a hiking pole is good not only for stability but for indicating to the world that you are not too steady on your feet, even when blamelessly sober. So it deals with the risk of being considered drunk when you aren’t (yet!) when on a night out. A quiet word with your friends to let them know that, if you are feeling that it is all too much, you will phone for a cab and make your own way home early, and that this is fine by you and that they are not to worry, can be useful too. Prepares the ground for a civilised get-out, without you feeling that you are pooping the party, and it might make you feel better to know that you have an escape plan that will get you outski with minimum disruption to others’ fun.

As for the bigger issues, well, I am sorry that you have all that on your plate and I wish you well as you navigate your way through.

GOod luck with it all.

Alison

Thank u for ur lovely replies, it’s good to know ur not alone! Yes hen night is tonight . I got myself a fancy walking stick so it is packed in my bag! I’m feeling a bit better this week and actually really looking forward to it. I suppose it’s a matter of learning I can’t act the edjit like I used to but that doesn’t mean I still can’t have fun!!

Sinead

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Hi Sinead, I’m still in limboland myself. Well done for getting a stick! Is it a fold-up one? I got myself one last month and am due to see a Physio next week so I’ll get the height checked. Too long or short could be bad for your posture, you see. As for alcohol…I was never a big drinker but since having these suspiciously MS -like symptoms, alcohol tends to aggravate them. It is a case of finding out your limits, so I recommend taking things easy. I wish you all the best with your housing situation. Keep asking for help when you need it, you never know what possibilities might open up! Have fun tonight :slight_smile: :heart:

So how did the hen night go? Hope you all had a rip roaring time, without the cops getting involved…unless, of course, one of `em was a strippogram!

pollx

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Hi. I am also in limbo. I’ve had 6 MRIs, 2 MRAs, 2 CTs and a Lumbar Puncture in 2 months. All with good results. My symptoms have included an ongoing numbness and weakness in my arms and legs ,as well as, blurred vision with numbness in the front of my face and back of my head. I even had slurred speech, difficulty chewing, and reduced hearing at one point. I ended up hospitalized a couple of times through this, once with a migraine following the spinal tap. My symptoms move throughout my body surprising me each morning. Although my sight is better today, my back and neck are hurting which seems to make my right leg go numb along with the back of my head. I have a second appointment with neuro in a couple weeks and an appt with a rheumatologist in September. I have been called a “medical mystery.” This is such a difficult position to be in but it seems that I am not alone. The hardest part for me is suffering basically untreated with an undiagnosed illness that is oftentimes questioned by some healthcare professionals and probably others. Luckily, I have had a few great supporters along the way. Hoping for fading symptoms and/or a diagnosis with treatment for all those affected!

Hi Sinead, how was the hen night? And just wanted to say you’re definitely not alone. Had my first consultation 3 weeks ago and first MRI this week, waiting for result. Numbness tingling in leg, hand, face, throat. But 98% of time on the right side only…how weird. And feeling pressure behing right eye, balancing problems etc. Hold on! I’m trying to do that too.