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grunzle

A BIG thankyou to all your messages !

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grunzle

Hello !

 

I just popped in to see if anyone had replied to my posting and believe me, I was thrilled to see that there were some replies after all ! Bless you ! Many Thanks !!

 

Well....shall I bore you ? Are you sitting comfortably ? I'll begin to tell you something about me and my situation !

 

I first experienced some Mobility problems in my very early 20's.....it lasted for a while, but despite seeing a GP or two, and also a Physician, nobody could shed any light on what was happening.......needless to say that apart from a chest Xray, I had no other tests.....

 

Soon after this, whilst in my Final year on my First Degree, I went abroad on Research (Textile History etc !!), and whilst in India, on my 2nd day, I obviously ate something which had been washed in "Bad" water....grapes or a salad....had to be one of these, and I got dysentery...oh boy....was it bad !!

 

Following this, I became desperately ill.....and grew weaker, more Jaundiced etc.....I was diagnosed over there with Suspected Malaria, Hepatitis etc etc......I lost most of my hair (All came back though !!! )

 

Some months later, I returned to the UK, and I have to say that since this Illness, I have NEVER been too good at all.......

 

My usual Practice refused to see me as I was a Student.....despite the fact that i lived at home ....they said i ought to get seen by a DR on Campus.....Ridiculous !

 

So, I changed my Gp, and then was examined and the New Surgery were horrified as to how thin and poorly I actually was....again though....after various tests etc (Bloods etc) nothing positive was arrived at, other than to tell me that I'd had Glandula Fever as well as everything else ! The Gp also thought that I had a tubercular bone in my foot etc, and he mentioned the possibility of MS.......soon after this, the GP left (pity, as he was super) and since then.....the other Gp's have changed, moved on etc.....

 

I never really made much more headway for some time, but my life altered drastically....gone was the person (me) with boundless energy.......I could barely do anything at all......and so I had to stop going out / socialising (Of course all my so-called shallow / plastic friends ditched me totally.....I no longer looked presentable and "Trendy" as far as they were concerned.....I had been doing some Photographic Modelling work prior to my illness, but those days were gone !!)

 

I went on to graduate, study further, eventually work....taught for some years etc...but continued to struggle upon a daily basis.....every so often I would pester the GP's , as I really wanted some answers as to why, as A youngish person, I felt so lousy, weak....listless, experienced pain and mobility problems etc.......eventually i was given a Diagnosis of CFS (Chronic Fatigue)

 

Having always been a skinny person....I went on to gain a large ammount of weight, which despite my efforts, I have not been able to shed at all.....

 

 

Cutting a long story short (as I know how "Wordy" I can be !!LOL) Over the years, I've found things pretty hard going......

 

I went on to have phases of recurrent Kidney stones, Angina, Malignant Hypertension (Highly resistant Blood Pressure, which without my many tablets each day is at alarming levels 24 hours per day ). I was diagnosed as a Diabetic too.. Have Arthritis, poor circulation, Raynauds...and according to my Cardiologist, this awfully high and uncontrolled Blood Pressure has caused damage to my heart, eyes etc.....

 

what about now ....??

 

Well for quite some years, I experience the most devastating tidal wave of exhaustion, which can strike at any time of the day...no warning.... It;s never been mere tiredness...this is seriously something else !

 

My mobility can be dodgy, Feels like my legs , hands etc are so weak and will not work...get cramps too...... and i have such aching muscles.....my left side does not always work too well, and i have chronic pain in my back / spine and neck.....and the headaches can be dreadful.... I feel dizzy and sickly, and my eyes are not too good.... but it's not Migraine, as I have had that...so am able to tell the difference

 

I have had balance issues, and the Gp said it was Vertigo / Menieres.....

 

My Hearing has deteriorated, and I have 2 hearing aids

 

I can have problems in swallowing at times, and my speech can get slurred and my voice weaker......especially as a consequence of that recurrent exhaustion, and the pain etc

 

Everything can be such a damn effort....sorry to whine folks..... I try not to feel sorry for myself at all....and push myself harder and harder until I am at breaking point....

 

I suffer with depression, anxiety etc ......I do try to remain positive....tis hard though at times..

 

Every time I go to the supermarket, I am aware of how I struggle...that damn left side etc, and I have problems pushing the trolley etc

 

I could go on further, but I'll have mercy, as I have tortured you all more than enough !

 

 

Last week, someone said to me "Have you ever thought that you might have MS ?"....after a while I did start to think about things.......

 

 

Now.....what do I do ???

 

In all honesty, and I am sure that I am not alone by any means, some of the GP's in my practice are not really very inspiring.....you know how it is.....you get looked at blankly, and after you've had your few minutes, they want you out ! One even told me that I'd had my 3 minutes !!

 

I guess I've just got to get my act together and approach one of them......Dare I ask for an MRI scan ?? I;ve never had one....

 

I suppose that I am deliberating as I feel rather daunted....but after all these years of having little quality of life, I've reached the stage when I truly would like an answer.....maybe I'll never get one...I'm just so aware that things are not getting any better at all....to say the least !

 

Many's the time that I've thought that I'd be better off out of this world....but hey..I am still here....ever the "Creaking Gate" !

 

 

Apologies for waffling on......Perhaps putting you all on the spot, but what do you think of it all ?

 

Many thanks in advance to those of you who will read all my waffling.

 

Cheers

 

Grunzle x

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Sunshine

Hi Grunzle

 

You are not "waffling on". It sounds like you have had a really hard time and have been a really strong person throughout. :lolbash:

 

I suggest you go to your Dr with a copy of what you have written here. Make a double or treble appointment. If you are not happy with your Dr, change them.

 

Obviously no one can diagnose on here. Your symptoms can cover many things (including Hughes Syndrome that mimics MS) and you need to find support from your GP who will be able to refer you to the Specialists he thinks you need to see.

 

Good luck and keep us informed :lolbash:

 

Sue :lolbash:


Sue x

Life is good - now watch it get better :)

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grunzle

Hi there Sue !

 

Many thanks for your reply, and kind words which I did appreciate. I thought that i'd reply immediately otherwise with my memory and concentration, I'll forget !! LOL !

 

Yes, I will put something in writing for the Dr...and also, am seeing my Cardiologist on Thursday 9th Oct, and will try to tell him too....again ! You know how it is....we can all get "Blanked" at times...or "Dismissed "....at least he always writes to my GP, so maybe he will mention something ? Mind you, having said that, he wrote to the Gp asking for a prescription to be issued,requested blood tests etc, and he actually phoned the GP in front of me....however, all of this was ignored......no arrangements were made for me, no prescription was left, no slip for the blood tests.....so I have phoned the secretaries again today re the tests,and have managed to sort things out on that score...finally ! I had to pester the practice for the Prescription to be issued......It all seems negligent, especially as the Cardiologist needs to have the drugs levels measured in my blood, for absorbency etc, then to check my Kidney function etc

 

When I think of this, I am now beginning to question how good the practice actually is......mind you, I think that I'm luckier than many !

 

Do take good care of yourself. I do hope that all's as well as it possibly can be with you ?

 

I shall now go around saying to myself "I Rock " !!! Cheers Sue !!

 

:lolbash: That Grunzle Person ! :lolbash:

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KayJay

Hi Grunzel

 

Your post has so touched me, in so many ways, because aside the differing symptoms you describe, your journey is so very similar to mine, my illness began after falling ill in Kenya in 1998, admitted to hospital 2 days after getting home, tested for malaria, and given a LP, and told at that time, bacterial meningitis, and also, that I had Glandular Fever, my health deteriorated thereon out, and a long and very emotional journey led to the door of a Nephrologist after repeated bouts of blood in urine, and right flank pain, renal biopsy revealed a kidney disease.

 

Fast forward to February this year, and after years of episodes that doctors simply cannot explain, other than keep referring me back to my renal department, such as fatigue, repeated infections, low grade temperatures, and since February onset of vertigo, tinnitus, muscle cramps, numbness in feet, kalaedascope vision, vision disturbances, speech disturbances to name a few. Head MRI recently, revealed not a lot, but ENT stuck to their diagnosis of Menieres Disease, but given my poor mobility, recommended Neurology whom I see on 24/10.

 

You have been through a lot, and we all at some stage I am sure can wholly relate to where you are at and how you feel, we cannot as has been said diagnose you, and offer advice, my only advice is you absolutely have a right to be heard, and the support of a decent GP is I swear imperative, in that respect I am so lucky to have not just one, but two very good GP's who do/have fight my corner.

 

I hate that blanked look, one consultant even had the audacity to keep looking at his watch and yawn, so my other advice would be, take someone along with you who you trust, who can step in when you feel you are just not getting anywhere, I know it is extremely draining having to explain/justify yourself, but somehow we just have to do it.

 

And :lolbash: you do, we all do, and I always think at the back of my mind, wonder how some of these medics would feel if they had to walk in our shoes.

 

Stay strong.

 

Best wishes

 

Karen

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peter

Hello Grunzel

 

When Marina returns from her hidy hole she may be able to give you some good advise

Marina is the owner of this forum and had similar DXs as you

 

Take care

 

Peter


STILL LIVING ( I think )

 

DXed 2000 PPMS Wheelchair bound

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Hezza

Hi Grunzle,

A big :welome2: from me. I saw your posts yesterday but was having a bit of an MS day so didn't manage to reply :lolbash:

 

Thanks for sharing your story so openly with us all. I for one like to hear other people's stories MS and otherwise - though it goes without saying that I would prefer it if none of us had them to share :hello:

 

I'm going to echo what lots of the others have said after reading your story :lolbash: and your resilience shines through. Whilst this forum won't give you a diagnosis I hope that the support and feeling of community which you will find here will help you to feel that you're not alone with this thing - whatever your "thing" turns out to be. Settle in and make your posts as long or short as you want.

 

On the medical front I guess all I can say is don't take no for an answer - has your GP ever referred you to a neurologist? perhaps that would be the next thing to ask them about?

 

Well I've got to get myself sorted and start work. Look forward to hearing more from you :lolbash:


Life is short. Eat dessert first. Jacques Torres

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Vegged Out
Shirl

Hi again - I've just (belatedly) welcomed you in your other topic!

 

I too began to be unstable in the balance and mobility dept in my late teens/early 20s - then fell very ill following the birth of my first son and have never really recovered. My overall health slid downhill with non-specific illnesses and then I had a head injury accident while teaching in 1996 and haven't worked since.

 

Diagnosed with MS a few months later but DX retracted by Neuro following MRI scans that showed nothing - despite his having written to my GP that I definitely had MS. The same GP retired me from teaching.

 

So...12 years later I moved town and my new Neuro has dug through all my old records - writing to various Neuros - and found out the Truth. In fact, I now have a progressive type of MS.

 

So that story was to try and show you how familiar YOUR story is and how it is not at all waffly!

 

Never be afraid to 'talk' to us here. :lolbash:



Shirley  "one day at a time"

 

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debzsanderson

hello Grunzle - just read your post (glad you felt able to write it and it was very interesting btw.......).My only expertise is my experience with my partner who has MS. Normal two of the common tests to diagnose MS is an MRI and a Lummber Puncture but doctors differ from area to area.

Oh and by the way............................ :lolbash:

 

debz xx


Mark has PP MS but I am his partner and do the posts as he cant use the computer!!

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Gaynor

Hello Grunzle.

 

Well gosh so much has happened to you and I'm sorry after all this time and having gone through so much you're still without a clear answer and I'm not suprised that it gets you down so much. You have almost been left and abandoned..........but not anymore. You now have us to help you in a cyber way :lolbash: and you must also go to the Docs as enough is enough now. I know you're gonna have to repeat all this again (by that I mean your history as you've told us) - but once that's done and if you get a doc who is good and will listen hopefully they'll be in agreement and refer you to a Neuro for tests.

If the Doc isn't helpful, then go see another - but hopefully that won't be the case and you strike lucky first time.

 

We're all behind you and let us know when you do decide to go.

 

Gaynor

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Michelle

Hi There,

What makes you push and push yourself to breaking point? This will only tire you more,and it will do little to help your stress levels. I'm not preaching at you,but when you suffer from any chronic condition, you have to be kind to yourself and your body.

Depression is also part and parcel of chronic illness, and if treated correctly can be managed. Many of us have experienced the depths of depression, and as a rule when one of us is down the other is up. This means that we can gently encourage one another to ride the waves that depression brings.

As for a dx of MS? Well, as mentioned in prior posts,a referral to a neurologist is a must. With your medical history they would obviously want to rule out other conditions. Infact,they tend to take this route whether you have other complications or not. I suffer from Raynaurds disease and it's awfully uncomfortable. Do you take medication for it? I take Nifedipine,which lowers my blood pressure, causing dizzy spells. In saying that, the meds initially worked.

I do hope that you are able to come to speedy conclusion with regards to your health problems. I would ask my cardiologist if they have any thoughts on what else could be going on in your body. I would also query a full body mri scan.

Take Care

Michelle :lolbash:

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Sluggish
Marina

I'm temporarily coming out of my hidy hole... :console:

 

As Peter's pointed out, I too had a very long "trip" to getting a DX. Here's my history (and, as many here know, I too can be very wordy!).

 

When I was 17, I had glandular fever - together with hepatitis (jaundice), appendicitis, trachyitis (sp?), pleuresy and the most appalling rash that they thought was scarlet fever - but the latter was due to some idiot GP giving me ampicillin which one never gives to anyone with glandular fever for that very reason, apart from which we also discovered I'm allergic to pencillin (ampicillin is a form of penicillin). I was ill and off school for 6 months. I didn't feel well for 2 yrs after that, mostly with a lot of fatigue.

 

I also had acute attacks of supposed vertigo which went on for a year or more, and I apparently messed up my knees with a supposed chronic inflammation of the ligaments in the knee joints. I was training to be a dancer and about to try to get a job as a dancer or model but had to give up all formal dancing and all sports. Not long after, my back started giving me problems too.

 

From then on, I was never really well again, always suffering from some mysterious chronic condition that would go on for years, including a gyny problem which supposedly affected my bladder, so I had 5 years of bladder problems too. At one point during this, they even thought I was having glandular fever a 2nd time except that it's not possible to have it twice...

 

In the mid 80's, I caught a rather nasty virus and then got even more fatigued. My legs also started to ache like mad. I had pins and needles. I had bouts of balance problems. I was always getting some kind of UTI. My feet felt constantly puffy and hot although they were neither. I would stumble a bit from time to time, or be clumsy. And a collection of other symptoms. In the end, I was eventually told I was a "classic case of ME/ CFS". I had no tests other than routine blood tests. So I assumed I had ME.

 

I then had 5 yrs of more gyny problems following a hysterectomy in 1998. I developed a truly acute and chronic pelvic pain. I had 6 ops to try to find the cause. Even if they found something, like adhesions, it made no difference to the pain. I was permanently bent over double in pain. In the end, it was decided it was some form of neuropathic pain for some unknown reason.

 

Then, in 2003, all sorts of new and weird symptoms occurred. I had what I initially thought was shingles but without a rash, followed by what I was given to believe was Bells Palsy. Each lasted 5 wks to 3 months. Later, all neuros said I had neither as they didn't follow the normal pattern of either. So, what I had was some form of abdominal sensory thing and a facial paralysis and numbness. I was woken in the middle of the night on two consecutive nights with incredible pain in both my legs and couldn't move until I forced myself out of bed whilst hanging onto everything for dear life. The legs hurt all day long. My feet and toes started going into cramps. My vision went funny and I had a bout or two of very short lived partial loss of vision too. My existing mild tremor turned into a more severe one. I lost sense of direction for a short while. (and drove my car into a bush by mistake, denting it!). I then had the mother of all head pains. Like an electric shot through my brain. Every step I took would induce this electric shock. I had a permanent headache. I couldn't bear bright lights and night-time driving was risky for me. I stuck this head pain for 5 weeks (typical of me not to go to the doc, as by then I'd pretty much given up on docs!). Eventually, someone said to me I should get a CAT scan in case I was having an aneurysm.

 

I got the CAT scan and was referred to a neuro. The scan was fine but I failed the Rhomberg test amonst other things (walking heel to toe with eyes closed) and he ordered an MRI. The MRI showed lesions of demyelinisation (sp?). As soon as I saw the results, I knew what it meant. However, the results of the MRI were at that time inconclusive and the neuro I saw at the time laughed me off saying that all I needed was a sleep clinic!!!

 

From then on, I fought for 18 months to see an MS specialisist neuro. Eventually and several dismissive pompous and rude neuros later, I was referred to one. Within a month, I had more MRI's including a full spinal one, and I got my DX of MS. This was 18 years after being told I had ME.

 

I forgot, in the meantime, it was found I was very slightly underactive thyroid, so I thought it was that too, as symptoms can be quite similar in some respects, and I put on almost 2 stone in weight and my hair thinned amongst other things. I'm not quite sure anymore what part of my body hasn't been affected at some time or another and for whatever reason, MS or not.

 

In all of this, I don't think there's a specialist I haven't seen over the years, yet none could explain the symptoms that we now know to be MS in my case.

 

There is no moral to this "story" but it does show that symptoms can be due to a multitude of conditions, many of which mimic MS.

 

All I can say is, is that whereas there were many times when I gave up on believing in docs, there were just as many where I fought and fought to get a DX, particularly after that first MRI.

 

As for anything else, the others before me have all said wise words, so no need for me to repeat them. I wish you every luck with your quest for a DX and, as I hope you know by now, we're all behind you here and always willing to give you whatever help and support you need :penguinball:


Marina

(belated DX in June '05, SPMS)

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