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I need to chat

Hi All,

My name is Ian and I am new to the forum :slight_smile:

As the title says. I need to chat!! Before I start thanks in advance for reading.

A few years ago I was struck down with Ramsay Hunt Syndrome. It took a few months to recover but I eventually got back to work. However the one thing I was left with (other than tinitus) was a partially numb right thigh. My Dr assured me I probably had a trapped nerve due to laying still for many days. I was happy with this answer as it made perfect sense but as time went on the leg got number and around a year later the left leg joined in the party!! A few months later I was out walking my dogs when my legs seem to go from under me it soon passed but again over months and years the attacks became more frequent and more aggressive. I now have to use a stick when they occur and this can be for a period of weeks or months at a time. I also have bad headaches, bladder issues, muscles spasms in both calf muscles 24/7!! When I am having an attack/flare up my vision becomes blurred I have a pressure feeling in my head which is like a strained confused feeling when I am trying to walk (thats how bad it is now) I have to concentrate on every step!!

I saw a neurologist around three years ago and had an MRI scan the results showed markings on the brain which in his words “In the right context could be attributed to MS” Before I could see him to discuss this result my GP had given me, he left. His replacement has a different view and feels the markings are consistent of someone my age? I have since had two lumbar punctures (both borderline). After a few more visits the neurologist and rheumatologist who I started seeing last year both decided I may have Sjogren`s Syndrome affecting the CNS. I went for a biopsy of my saliva glands in February and the result was again borderline.

I then had a really bad flare up in March and could hardly walk and was put on 60mg of steroids for weeks slowly reducing them down to 5mg by April when I saw the Neurologist. As they had kick started my system they kept me on 5mg a day until my next visit in July. However last week things again took a turn for the worse and I am on 20mg a day and my visit is now in 2 weeks.

Ever since I was a child I have had border line illnesses of one type or another and when I got chicken pox I was laid up for weeks. My parents, brothers, friends, wife and even myself all doubt my sanity? Having never had a full diagnosis I feel so unsure of my own inner feelings i.e am I laying it on thick, am I trying to get sympathy, am I trying hard enough to get better…am I really ill. Of course at the end of the day I know I am ill but I have no one nearby who has had a similar experience that I know of? The DR`s are doing everything they can to come up with an answer but the frustration and despair is something on top that I hope venting openly for the first time will help.

Thanks again for your time reading this post. If anyone has any thoughts on my condition I would love to read them.

Ian :slight_smile:

Hi Ian

sorry to hear of your worries. I have nothing to add about your condition, but can empathise with your situation.

I notice a question mark after your “doubt(ing) your sanity?”. The only thing I would add is that if the docs thought it was in your mind, I am sure they would have got around to saying - its part of their job.

I actually voice my concern of being labelled “worried well” at my last GP visit, and he said there was clear evidence of stuff being wrong. From what you say, sounds like you have evidence too. Problem is, the body is far more complicated than doctors are smart - and with hundreds of thousands of things to go wrong, I am sure working out the problem is not always easy.

Hope things pick up for you.

g

Hi Ian

That must be so difficult for you being in limbo like this . This may sound stupid but if you got the Ms diagnosis would you get any more / different treatment. Would it make you feel better to know its Ms ? Of course you are trying hard enough to get better . I’m wondering if the diagnosis of Ms would make you feel more legit ? But of course whatever you have your symptoms are very real and I can empathise with you . I am in limbo too and im having counselling , not helping as yet but we will see .

Best wishes

Kat x

Hi Ian I like you have not had a diagnosis yet this limboland can be a very lonely and frustrating place.It isn’t your fault that your are not diagnosed yet and I must admit the symptoms are hard enough to deal without felling you are some how in the wrong for having them.All neurological conditions are difficult to diagnose and it all takes time and I have been warned by my GP that I may never get a diagnosis but at least now they are looking for one.You can not force your body to do something it can’t or wont do unfortunately the only control you have in this situation is to keep plugging away at the health service adn hope things don’t take too long an inthe mean time try to get on with life and don’t waste energy blaming yourself(can you tell I’ve had counselling)I’ve been convinced that this is my fault but not now some higher power with a sick sense of humor is in charge.Take care and venting is good family members don’t always understand.Sue

Hy guy75,

Thanks for the reply.

The sanity worry is a passing doubt I have every now & then. The Drs know I have a CNS illness they have said as much and although I get down not knowing the name of the illness I realise the DRs are trying hard to help.

“Worried well” that is a new label!! Yes like you I have evidence in blood tests, MRI scans & lumbar punctures and a biopsy all showing something but just not enough to say “yes” that`s what it is.

All the best

Ian

Hi Kat,

Thanks for the reply

I think the diagnosis would help in whichever form it comes. Mainly for day to day things to be hones i.e my wife & I bought a flat a couple of years ago and I couldnt take out insurance as they asked if any part of your body was numb. Me being honest bought yes. Why? they ask. Dont know I reply. Sorry until you know we cannot insure you!! I am still working and thankfully I have been in the same job for 14 years so my boss knows this has been progressive and is letting me away for appointments and paying me, which helps keep the stress levels down. But since this latest flare up even he is asking questions I can`t answer.

The counselling I hope will help you? I actually trained as a counsellor in 1996 (I did my first year) then moved to Scotland where the certificate wasn`t recognised so stayed in the motor trade (not much difference). The people I trained with were a great bunch and I believe given time counselling helps.

All the best

Ian

Hi Sue,

Thanks for the reply.

Sorry to hear you are also in limboland. You are so right it is a frustrating place to be!! I get upset when I see my wife and children watching me walk when I have a flare up. I look like I have lost my horse!! My gait is so out of synch my whole posture changes (pregnant duck) is one expression one of my son`s used :slight_smile: I try to force the body to keep going as we are a very busy family but it is getting harder to do. Crazy thing is that once the phase passes I look ok and although I will never run again I walk fairly normally albeit slower than I used to.

How long have you been in limboland? I hope they get to the bottom of your problems soon.

All the best

Ian

Hi Ian I’ve had symptoms for about 10 years they assumed that they were due to damage in my neck and when 3 yrs ago I got worsening problems with my legs etc they sent me to pain management no one examined me until early this year when it was found that my reflexes are brisk I a,now waiting to see neurologist for first time middle os September.Unfortunately my symptoms are all the time I have perfected the art of slow walking what takes my hubby 5mins to walk takes me 25 plus.I know what you mean about your family watching you my daughter is 30 but has moved back home last year(not due to me but abusive partner)and she gets upset when I am having trouble walking she can’t accept that this is me now and she has to forget the old one fell walking riding etc.To deal with it we make a joke of my problems,we are going to Durham on a girls day out and last time a woman on the bus verbally attacked my daughter because she and I were laughing at me not standing very well my reply was “sorry if we have offended you but this is how we deal with the way I am please get over it I have to” she shut up after that but not until she said is was rude pot kettle black.My hubby accused me of stick rage the other day I ma so slow that I can’t get across a pelican crossing in time so start off as son as the traffic stops I was half way over whe a waiting car peeped it’s horn hubby grabbed me quickly I wanted to hit it with my stick the lights were still on red so I have no idea what his problem was.I do wish thye would time these things for us normal people and not for Linford Christy or Mo Farrer.All the best Ian

Hi Sue,

Ten years is a long time!! In honesty I have had problems of one sort or another for over 25 years and even when I was a youngster I didn`t always feel right. I hope your visit to the neurologist is productive, I am very lucky with mine as he is a nice person and easy to talk to and is (I feel) really doing his upmost to help me.

Even when I am at my worst I still try to get out and walk the dogs, the time difference for the same walk is amazing!! My eldest dog is 14 and on my good days I wait for her and on my bad days she stops and waits for me!! I am lucky in that I still work. I am in he motor trade and have worked at the same place for 14 years. Iam in the office in the service department and can stand sit whenever I need. I get plenty ribbing about how slow I am and how weird my walk is, but its all done in good humour and I am normally the first to start it off :slight_smile: The guy`s are all very understanding on a serious note and do look out for me, so again I am very lucky.

My eldest lad is 20, my middle, 16 and my youngest 11, all three are very good about things but I find it harder on me with the youngest. We havent done the bike rides or so much of the kickarounds etc as I did with my elder two. Also sports day until a few years ago i was one of the faster dads now I cant run which is hard on my son when the teachers call for the Dads race and my son comes to get me, I walked it last year (as in I walked not won easily) :slight_smile:

I haven`t had the pelican crossing rage but do agree they are blinking quick at changing. Mind you it sounds like the person in the car needs an attitude check? There is a name for them…but not printable :wink:

All the best

Ian