Coping with Limbo-land

New diagnosis and before diagnosis
1

Hi everyone. You all seem a nice and supportive bunch on here so thought I’d post about my health problems and maybe ask a couple of questions.

A brief summary of my symptoms:

March - June 2011: Numbness/tingling on right side of body. GP thought it was likely caused by a virus. Eventually disappeared.

Nov 2012 - June 2013: Return of numbness/tingling as above. Eventually disappeared.

June 2013 - present: Strange sensation in head and on left side of body many times every day. Often uncomfortable and sometimes painful. Includes loss of balance, feeling of weakness and lack of control of left hand, slurred speech, bumping into things etc Has become worse since it began. Lasts 10-20 seconds at a time. Sometimes many times an hour. Some residual weakness/slurring in between episodes.

I have seen a neurologist and had an MRI and various blood tests. The MRI showed some lesions on my spine but none in the brain. It also showed I have a minor defect of the brain which is not likely to be the cause of my symptoms. I am awating results of blood tests and was recently called in for an additional blood test for Aquaporin 4 Antibody, although no one could tell my why I was having this test (I’m hoping it’s for elimination purposes as I’ve googled it!).

Up until the last few weeks I have been trying to be patient and positive but I’m now really struggling. I’m totally exhausted and not coping well with my daily symptoms. I’m struggling at work but afraid to be off sick. My self esteem has hit rock bottom and I find myself avoiding people because I feel such a mess. I lie awake at night worrying about losing my job and being unable to pay my mortgage.

I’m 48 and until now have had good health, a hectic social life and have always been the one that helps everyone else with the ups and downs of life. Friends and family don’t seem to understand how I’m feeling and don’t understand where the old me has gone. I’ve never felt so alone in my life :frowning:

Anyway, what do you make of my symptoms? Could it be MS? Any other ideas?

Any advice for coping with limbo-land?

2

hello Sharrona, i’m the same age as you, not dx, MS was ruled out initially despite high signal brain lesions, but have had some antibody blood tests back that are positive and suggest some type of auto immune disease, my neuro is on holiday so still waiting to see him to discuss, These symptoms can be indicitive of any number of things, not all of which are serious. I feel your frustration, like many on this forum we are in limbo and just want answers. At first I was very impatient and angry that I didn’t seem to b e getting anywhere or taken seriously, but over time i have accepted that I have to play the long game and go lots of tests to eliminate things so that the neuro can get a better picture. i guess the worse thing about limbo is being so ill but not being able to tell people what your condition is because you just don’t know yet, it makes it hard for other people to understand what you are going through. The way i now cope is to tell myself that one day, some how an answer will be found and i will then be able to get help/treatment for what ever is going on. One thing i have been dx for is migraine aura but it seems thats not the full story but does explain some of my symptoms. Hang in there and don’t give up, you’ll get there one day. all the best x

3

Hi hun, I spent many years having tests and nothing coming back to prove anything. Many conditions were ruled out, but PPMS stayed as the main contender for a long time.

After about 11 years, MS was discounted and Hereditary Spatic Paraparesis became the diagnosis. A year later that was quoshed and PPMS figured again.

Last year i saw a different neuro who specialised in HSP and MS. He told me I definitely did not have MS, but as there was no evidence of family with HP, I now wear a label which read;

Spastic paraparesis/cause unknown.

Still i am still at a loss to know what exctly is wrong with me.

i understand what a horrible, anxious time it is in limbo-land. how did I cope all those years? i guess my supportive family and a few friends helped a lot. My own natural bubbliness did a lot to help. But there were many dark times, when i cried and laid awake at night wondering what was what.

My main symptoms were/are tripping/falling as foot drop was bad. Plus spasticity and spasms in legs, arms and feet. Then bowel and bladder problems arrived. Pins and needles in my feet can be bad.

I take amitriptyline for nerve pain and balcofen for spasticity and spasms, plus quinine for restless legs, and oxybutynin to calm my bladder.

My problems began in 1998 aged 45,and I retired at 47, as progression was rapid. I am now 60. I use a wheelchair full time and am hoisted. Like you, I didnt want to go sick and wondered how we would manage financially. But things sometimes work out better than we fear.

Hang in there hun, keep talking to us and hopefully that diagnosis isnt too far away.

luv pollx

4

Hi Sharrona x

Limboland sucks as we all know & sometimes it feels like it’s all going to go on forever with little help or support coming our way!

My last bad patch lasted 4 months - during that time they wouldn’t let me go to work (even if I could!) and I was worrying about my job etc.

But I think the worst thing was feeling helpless - isolated and alone - just waiting waiting waiting all the time! My GP’s were outstanding but were pretty helpless - nobody would give me anything to help the symptoms because amongst other things they found my pituitary gland was enlarged and giving me the wrong drugs without knowing exactly what was wrong could cause more problems.

Eventually I was prescribed baclofen followed by gabapentin - what a relief!!

I know it’s hard but you just have to hang in there - use this forum - we have all been there and some are still right there with you xxx

Most of the tests you are going through now are to rule things out or rule things in so don’t panic or worry if they are testing for nasties as well as simple things - looking back I wish with all my heart that I could have developed an attitude of ‘whatever will be will be’ - it would have saved me so much anguish in the long run! But sweetheart be assured that what you are feeling is absolutely normal - you are probably stronger than you think & you WILL get through all this xxxxjenxxxxx

5

Hi :slight_smile:

Im in the same boat… waiting. It seems interminable sometimes!

I’ve had all my investigations now. Just waiting for results.

With hindsight I now realise I have had symptoms for approx 7 years now. I really hope to finally find out what’s going on!

Good luck :slight_smile: xx

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yeah reading through this section of the forum it is very apparent that limbo is a well termed verse. I have been off work now for almost five weeks and I have isolated myself. I have not wrote on Facebook as I normally would or kept in touch with friends. On days when I have felt good I have stayed in as we’ll I case someone from work saw me and think ‘she’s off work’ which has isolated me even more. So my advice would be to keep in touch with your friend, keep as normal as you can during this testing period and take advantage of the good days that you may have. All this goes towards ensuring that this ‘limbo period’ is not period of isolation, and friends and family and support groups like this are around you. and whilst can’t make the days go quicker to you find out what is happening you can make them more bearable. Yvette

7

Thank you so much for all your kind replies. It really does help knowing others are in the same boat (although I really wish NONE of us were in it at all!) I also realise lots of people have much worse symptoms than I do and marvel at how you all keep going.

I had a bit of a wobbley moment at work today and ended up having a long chat (and a bit of a cry) with my manager. I was honest about what is going on for me, something I’ve been reluctant to do up until now. He was very supportive, and told me to take time off if I need it. He also offered me 6 sessions of counselling through work which I think I’ll take up - I’m hoping it’ll help me get my head round limbo-land!

Bunnycat, I’m glad to know you’re the same age as me. I’d come to the conclusion that neurological conditions affect younger people so thought I was a bit of a freak! I too have been told that I have some sort of autoimmune condition. Good luck in finding the answer to yours.

Boudica, thanks for sharing your story. I am full of admiration for the way you have coped. I’ve always had a belief that things work themselves out in the end and have come through some other great trials of life remarkably unscathed. I guess I need to get that belief back?!

Kizzydane, thanks for your inspiring words. I too have a great GP and get what you mean about them being a bit helpless to help us in this situation.

kaz-x-, it sounds as if your long wait might soon be coming to an end? I hope so. I’ve been reflecting on my previous health and keep having realisations about other minor things that I think could be related.

Evejam, I think you’re right, trying to keep life as normal as possible is a good idea - not always easy though! Could you follow your own advice and reach out to a friend or workmate? Just to keep you connnected to your real life?

Thanks again all of you. Keep looking after yourselves xxx

8

Sharrona I think writing to others on the forum provides a chance for us to reflect on our own situation. Following me writing the response yesterday i arranged to meet a friend at work for lunch. I also made an attempt to rejoin friends on Facebook. I have never been isolated like this and I do need to make changes to combat it. I am a social worker and often come across older people who for whatever reason have found themselves isolated and I readily give out suggestions to them. I need to listen to my own advice ha ha. By the way I am 45. Yvette

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Hi, I’m here in limboland too! I’m 39 and have been having various symptoms for many years but last year I finally began to seriously suspect MS and went to my GP. I didn’t tell her what I thought it was but the way she examined me made me realise that she was looking for neurological symptoms. She suggested I keep a symptom diary (which I had just started doing anyway). I’m now considering going back as I’ve been having a rash of symptoms such as mixing up words, dropping things (knives…not good. Missed my foot though!) fatigue, trouble hitting the right keys when typing, vertigo, slight numbness and tingling and a reoccurring pain/ stabbing sensation in my upper back, muscle twitches, difficulty concentrating, poor memory…yet all these things seem minor on their own, don’t happen necessarily all at the same time and are hard to show people! So what do I say or ask for when I go back to my GP?

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Hi, I think you should go back to your GP with that diary. Hopefully she will refer you to that neuro now.

pollxx

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Thanks Poll. The question I have now is, do I actually say that I’m concerned that it might be MS or do I just keep that bit quiet? My main worry is that I am frequently the responsible adult in charge of my daughter and we are essentially home alone together for much of the time, as my hubby works long hours. (Something else to mention to the GP). I did have some bowel problems a while ago which I underwent an ultrasound scan for but they didn’t find anything and the band-like pain and constipation eventually faded. I couldn’t tell you when this was though…unless it is written on my calendar somewhere. Does MS affect how you perceive time as well? I have trouble placing past events in a time line, unless I have a very definite ‘landmark’ event to refer to. I get in trouble for leaving food in the fridge far too long, for example. I lose track of time during the day easily, too. So what exactly do I say to my GP?

12

Well done Yvette! It’s not easy to reach out to people when you feel lost and vulnerable. Maybe you just needed to take a step back for those few weeks but now you need people again? Hope it’s all going well :slight_smile:

Reikiblossom, I have seen your other thread too and a lot of your symptoms sound similar to mine. I have periods of time when I feel drunk and wobbley everyday! I’m very worried about falling over, bumping into things, breaking things or slurring my words and seem to spend all my waking hours trying to conceal all this. I think this is probably why I also feel totally exhausted most of the time (well that, and not being able to manage a good night’s sleep!). Keeping a diary sounds like a good idea though …might start doing that too. Thanks for the tip :slight_smile:

I found the last time I saw my GP, he seemed to really take notice when I talked about how this was all impacting on my life - avoiding social situations, stopped going to the gym, driving a different way to work as feel unsafe on the motorway, feeling lost and insecure, worried about managing work etc He seemed more concerned once he knew it was affecting me this way.

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Well done Yvette! It’s not easy to reach out to people when you feel lost and vulnerable. Maybe you just needed to take a step back for those few weeks but now you need people again? Hope it’s all going well :slight_smile:

Reikiblossom, I have seen your other thread too and a lot of your symptoms sound similar to mine. I have periods of time when I feel drunk and wobbley everyday! I’m very worried about falling over, bumping into things, breaking things or slurring my words and seem to spend all my waking hours trying to conceal all this. I think this is probably why I also feel totally exhausted most of the time (well that, and not being able to manage a good night’s sleep!). Keeping a diary sounds like a good idea though …might start doing that too. Thanks for the tip :slight_smile:

I found the last time I saw my GP, he seemed to really take notice when I talked about how this was all impacting on my life - avoiding social situations, stopped going to the gym, driving a different way to work as feel unsafe on the motorway, feeling lost and insecure, worried about managing work etc He seemed more concerned once he knew it was affecting me this way.

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Not sure why it posted twice?? Anyone know how to delete one?

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Yvette - I’m a holistic practitioner and so I know what you mean about taking your own advice. I find that Reiki helps me to reduce anxiety, though I could certainly treat myself more often! Sharrona - thanks for your reply. I will make sure to mention to my GP how these things affect me. For instance, I haven’t ridden my bike in …years! Our daughter has just got her first bike and hubby keeps pushing me to ride with her but to be honest I’m scared of losing control. I never learned to drive and have been thinking that I might when money allows but again, my various symptoms are really making me doubt that I’d be safe behind the wheel. I love being independent and yet feel so restricted. I don’t trust my own body anymore. It feels a bit dramatic saying stuff like that when others are coping with so much more. I’m fed up with this all being so fuzzy and almost wish for something more obvious to present to my GP…though my diary makes things quite concrete. It helps to put things into perspective, especially as I have trouble remembering when events occur. Thanks for reading, I’m really chewing things over again and need to see my GP again, I know.

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I think you’re right Reikiblossom, sometimes saying something out loud (or writing it down) helps you to see things more clearly.

I also know what you mean about things being fuzzy and hard to get a grasp of. I also feel a bit sorry for our GPs trying to make sense of our vague descriptions of symptoms that don’t have any obvious cause but feel quite overwhelming to us. The human body is certainly a weird and wonderful thing!