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Limbo Land of waiting

So I’ve had a few months of odd symptoms. I’m a big believer that it is all in my head and I’m over reacting. In fact that is a consistent thing I do with every ailment I get..... think it is nothing and I’m that I’m over reacting and then it turns out to be a “thing.” One example is thinking I was overreacting about a coughing fit and reluctantly drove myself to hospital and it turned out I was having a serious enough asthma attack that required 1:1 observations.

 

anyways, I initially put down my pins and needles down to Morton’s neuroma (MN) even though far more of my foot was effected than would be indicative of MN. The pain was pretty bad and I was having shooting pains a couple of times a day but kept putting off going to the GP because it’s not an emergency. Anyways, I ended up having a fall and broke a toe. After a few weeks in the boot I couldn’t tolerate the sensation and had to take it off because it was so unbearable plus I kept tripping up even more. When the boot was off I had tingling still up as far as my knee.... it was more evident because the increased “sock” sensation from the boot wasn’t consuming me.

 

Also had reduced sensation which I attributed to swelling from the fracture. Turned out my foot was ice cold too but I couldn’t feel the temperature change myself. Went to GP who ruled out circulation problems and said it was neuropathic but because I had an I healed fracture I would have to wait and see. Also had random back twinges and bolts of pain but everyone including myself was Happy this was posture related thanks to the fracture.

 

at the same time I was also having extremely bad fatigue, impaired cognitive function and difficulty with word finding. I was willing to put that down to the energy it was taking to heal a fracture. Also a total drag as I started a new job that I need a lot of brain power for and need to remember how to form a sentence that sounds like I know what I am talking about.

 

so, after many weeks later, tingling/sock sensation remains on my foot and leg. It’s relieved temporarily by massage...l returns as soon as I stop. The pain is intermittent but I get either a bolt of pain or burning sensation a couple of times a day. It’s bad enough to make me stop what I’m doing and grimace. I’m getting lovely muscle twitches on the same side too. More relaxed I am the more prominent. Still a chronically exhausted pigeon. Coordination was never my strong point but these days I’ve had many an accidental hug with the walls in my apartment. I don’t feel dizzy, it’s more like I’m being pulled sideways and downwards by gravity. My back symptoms went away as my posture returned to normal post fracture. Hand had started tingling too.

So after having many problems getting a GP appointment (why did I decide to go with 9-5 life for a promotion), he initially didn’t hear what was I saying and checked out my foot for fracture healing then when I listed a bit more he had that “oh (removed by moderator)” face for a fraction of a second before returning to normal business like face (I really hate that my training and job make me notice very subtle changes in people’s reactions). Bloods were ordered. Did turn out my hand was carpal tunnel thanks to using crutches and spending most of my work life on a computer.

 

Fast forward to today. Went in for carpal tunnel injection and it turned out my bloods were back..... bloods were all completely normal. I was really banking on it being B12 deficiency or my love of sugar finally taking me to type 2 diabetes. Part of me was super relieved and thinking..... yay! I am imagining it all! There is nothing wrong! I’m overreacting! Hypochondriasis FTW! But also thinking whhhhhhy can’t it be B12 deficiency so I can get my butt muscle pumped full of that lovely orange liquid so I can feel human again. To “oh (removed by moderator), what if it’s one of these times something is really messed up with me.”

 

So, GP says to go away and see how I am in 4 weeks and if I still feel the same a referral to neurology will be made. I’ve no problem going away and waiting underneath it all. I’m rather ok with it being “nothing” because I’d much rather have hypochondriasis than anything else. But there is always the what ifs...... 

 

i know it could still be something else but I’m still having that darn what if. 

 

My my question is..... what helped you get through the what ifs and waiting? I’m crap at waiting. I like a plan. Give me a problem and I’m instantly in planning to manage it mode. Right now all I can manage is to eat my worries.

 

I have MS

Hello

I must say, that is a limbo land post which made me smile. All your ‘overreaction’ and ‘hypochondriasis’! 

You are clearly someone who wants answers and now, dammit!!

Unfortunately, those answers aren’t going to conveniently come when called upon. 

You should remember that for everyone who wonders ‘what if ... this is MS?’ the vast majority do not. 

There are many, many diagnoses that share symptoms with MS. Only time, doctors appointments, waiting, referrals, tests, waiting some more and then waiting a bit longer will give you the answers you so dearly want. 

Unless of course, a bit of time goes by, your symptoms improve and you decide after all that it was an overreaction. 

We are very happy to share your miserable waiting time. We may not have all the answers you want answering, but we may have some. 

Hope for the best, expect some waiting around. 

Sue

I’m still rather content to think it is absolutely nothing expect my very wild imagination or that my knickers are too tight. But the health professional in me then kicks in and says “well life isn’t always a complete embarrassment and things can actually be wrong.” I hate it when that side kicks in because usually that side is what gets me to a doctor and then I get told off for not coming in sooner. But I’m very aware that there are so many other things that don’t show in bloods that can be like MS but I’m not knowledgeable enough to jump to those conclusions (Dr Google is a (removed by moderator)- I don’t trust it). But then I would much rather be told right this second that I have a raging imagination so I can get on with my life as normal and just get used to all the weird sensations because I’m rather good at tolerating discomfort (I rearranged my work schedule within minutes of my fall, contacted my boss to say I needed to work from a base nearer to home temporarily then called a taxi to take me to ED then walked in to ED because I didn’t want to inconvenience anyone by waiting for a wheelchair and when they confirmed a broken toe my response was it can’t be.... I live in a flat and need to walk my dog.... genuinely... I was really pissed off with them) In my weird head I know I am better off with planning for all eventualities so I “know” how I will deal with it and that method is usually far less stressful for me. I was in such shock that my bloods were normal that I couldn’t even respond. Especially since I really over indulged at the weekend thinking that this week I would be told a sugar free diet. I was also holding off doing productive life stuff until after I was told I had a b12 deficiency and also facing diabetes if I didn’t get a grip and being told that my foggy coggy brain was just foggy because I’m a hypochondriac. Being told that would be the kick in the butt I need to actually do the study I need to do for my course because I have no more excuses for delaying. Now I have to wait God knows how many more months to be told to wear looser knickers so I can feel something other than pain in my foot?! It’s going to be even more mega embarrassing to be told that by a neuro when my Gp could have said it. My friend, who is actually a GP, picked me up for an outing this evening so I could whinge. She’s a great GP.... she offers no advice whatsoever and supported my decision to comfort myself with a brand new Nespresso machine with all the bells and whistles. And also reminded me that even if it is MS I will likely to be feeling way better by the time I even get an appointment anyway.

I have MS

Your writing is excellent. I’m sure it reflects many people’s feelings about their right knickers (bras, socks, etc)! It really does make me smile, even though I know that in part you write it all down as a way to sort out your own feelings about it all (that’s what I’ve often done!). 

A brand new Nespresso machine is an excellent way to cheer yourself up. And if it came with a free George Clooney it would be even better!

Whatever happens in the end, you won’t be embarrassed. Hopefully you’ll just have to live with buying slightly bigger knickers!

Sue

Thank you! I like to keep my head above water by at least using a bit of humour. Have to have a giggle though.... my bra was far too tight today and it was welded to me by the time I got home.

 

my new machine is amazing and I can now have lovely frothy lattes from the comfort of my own home. I’ve decided I’m going to loose weight to fit back in to my knickers by just living on lattes. Don’t worry though, I do have lots of decaf pods.

 

I have to admit I googled while I was at uni today and all the even more serious/lethal stuff are definitely not what I have. The classroom was awful warm so I ended up feeling really ill while I was there. I had a day of pains that made me jump which I hate when there are people around. oh and I somehow got a soaking wet foot and didn’t even notice until the water climbed up as far as my knee. I had to turn around and go back home to get changed because it was muddy too.

I’m missing the fracture pain. At least when I had that I could convince myself that the other stuff is totally linked to it (even with 2 GPs and a physio say they are not related). 

 

I have MS

May I suggest that you give that old quack ‘Dr’ Google a wide body swerve? You know his MD came from a mail order company? And he’ll either sell you some snake oil tonic or convince you that you have Ebola, a brain tumour or rabies. 

If you want information about MS, stick to this site or the MS Trust. 

But probably better just to avoid random searching at all (you already know this!) 

It seems that you really will have to wait for the necessary time when you can go back to the GP and then possibly get a referral to neurology. Sorry, no short cuts here!

(My coffee machine is a Dolce Gusto, that is pretty amazing too - the caramel espresso is great.)

Sue

 

I normally do give google a good swerve and stick to reputable sources however I do get rather distracted when in uni. At least I came out of it reassured that I don’t have anything serious! Luckily, I’m rather sensible at times.

I think my biggest need is to have it confirmed I will remain active and independent. I’m not good at being limited. When my toe was broken I was so agitated because of the lack of physical activity.... yet I still managed to win most days on the daily step count at work despite being told to “rest.” I mean.... it was rest for me.... I knocked 10k steps off my daily count. I couldn’t drive my normal 1 hour commute so I got up earlier and took 2 buses. I resented having to send my dog to kennels for a few weeks. When I got her back I was still in the boot and using crutches for walks that required distance and she got her two walks per day.

I splashed out on the Krupa Nespresso expert and milk machine. Very grown up and shiny. I’m sat enjoying the wonders of serious milk froth. It’s making me feel better about life.

Including my sleep last night and a nap today, I’ve had 11.5 hours sleep. Happy with that. I like having a few days leave from work because naps make the world go round.

Just a bit of a mindset update.... I’m in a less freaked out place of mind and a lot more practical. When I did my maths, it turns out I’m still in the rehabilitation period from the fracture hence why they probably want to wait another few weeks. I’m guessing a referral would be declined until I’m definitely out of the healing state as most people at my stage would still have some form of posture difficulties due to limp which could contribute to the main symptoms.

I’ve also started looking at the how I manage with what I have right now (as in the difficulties) rather than worry about an unknown future. It’s put a lot of perspective on things as I know I’ve functioned very well previously when going through extended periods of illness and worked through many a life difficulty with my typical stubbornness about being independent.

I’m trying to get back in to making better choices with food and trying to step up physical activity and doing mindfulness because I know the healthier my lifestyle is then the better the prognosis regardless of what is going on. I’m also making sure I still have plenty of time to do things I enjoy and make me feel good about life. Even if it is MS or something of that elk, I’m determined to have a part of my life, just not the defining feature of my life but I am going to allow myself to get upset and emotional when I need to while I’m going through the big wait.

I’m also thinking about buying some bigger knickers to rule that in as the primary reason why I’m having all these odd tingling things in my legs.

So, I’ve had lots of misses with the GPs I’ve seen since. Lots of go away and wait. But usually following a certain degree of not listening and a lot of rushing. I’ve a few fellow healthcare workers that I’ve been speaking to that are also patients there and they are also not happy with the surgery. One positive is I was started on amitryptine a few weeks ago and it has decreased the pain levels so that’s a reduction in that one symptom.

 

my friend who is a GP and my physio have encouraged me to go back. My friend doesn’t ever give advice but she’s been supportive and constantly reminds me of my symptoms. Also got lots of telling off that it isn’t all my imagination. 

Anyways, went to the GP today. Saw a different one to usual. Gave him an outline of my main problems. He said given my bloods being normal and the length of time it’s being going on he felt referral was appropriate at this stage.

At least that is a start, it might take a while to get an appointment, there are different ways of being put forward. I was put forward for an MRI from the eye clinic, as I had double vision (still do) they then put me forward to see a neurologist who the asked me to have a lumber puncture and blood test this took about nine months from start to finish, the neurologist saw me again in April and said that my LP was clear but I have a weaker left side and that he wants to see me next April. Good luck

Kay

It’s like one long wait replaced with another. I think my main relief is now I’m heading in a direction at least. My main worry is that I’m not doing enough myself to make sure I recover from whatever is going on. I was genuinely surprised when the physio said the muscles in my ankle were so stiff and that after lots of him working on the ankle it wasn’t much better. Then when my boyfriend (a doctor) tested the strength there was very little power in it.

I’m very close to taking sick leave from work so I can do a bit of a reset on my diet. Because I’ve been so exhausted all my energy is conserved for work, various physio exercises for various parts of my body, doing things at the weekend I enjoy so I don’t get depressed and sleeping, that I my diet is gone bad. I just don’t have the energy and strength to cook even though I always make one massive pot of something and make it last all week.