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Daze2018

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Daze2018

I really hope this post is allowed... I'm not sure where else to turn so now I'm on the internet seeking some advice. Please delete if not allowed.

 

I began feeling very unwell in May. I just woke up one morning with pins and needles, loss of sensation in finger tips, uncomfortable painlike electric shocks down my neck and spine when I move my head forward and a tight hugging sensation around my stomach and chest which felt really uncomfortable for months.

I went to the doctor about 4 days after my symptoms started and he sent me for blood test which came back with low white blood cell count. He said I had an infection that my body had recently fought off on it's own.  He didn't send me for anymore tests and told me it was probably stress as both my parents have had cancer in the last 2 years and I've been very depressed and anxious.

The symptoms began to get worse. I noticed fatigue, trouble breathing and I felt very unwell whilst in the bath or out in the sun. My doctor kept making me go for blood tests. I asked him if there was a possibility that it might be MS, as my uncle was diagnosed at my age and someone else in my family were sufferers and he point blank said no, that symptoms only occur on one side of your body and the kept insisting it wasn't serious and that MS isn't hereditary. Eventually I couldn't take it anymore and went straight to the hospital where they referred me back to doctor asking to please refer me to neurologist. He did and the neurologist referred me for EEG and MRI.  I had my MRI 7 or 8 weeks ago now and had to rescan as they found something at the bottom of my spine which required me to have contrast dye. My tailbone and lower back just hurt constantly with the symptoms worse of an evening.

MRI confirms inflammation on brain and possibly spine though I have been fast tracked for lumbar puncture. My appointment in Tuesday and I'm scared I won't be able to sit still.

 

Please could someone tell me if my symptoms could be MS as I'm so scared but my doctor told me my worries are unfounded??

Also, please could someone talk to me a little about their experiences with lumbar puncture if that's okay...? I'm scared I won't be able to be still during the procedure because of the back pain.

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Sluggish
Shirl

Hello and :welcome2:

 

2 hours ago, Daze2018 said:

Please could someone tell me if my symptoms could be MS as I'm so scared but my doctor told me my worries are unfounded??

For anyone who is experiencing the symptoms and tests you are going through, this is the right place to be. BUT that does not mean you have MS and no one here can tell you either, as there is no one single test for MS. A lot of the diagnostic blood testing and scanning can also rule out other possible illnesses. As you have family members with MS, you are bound to be concerned. I'm sure your doctor means to ease your worry but until a Neurologist has made a diagnosis even an experienced GP cannot say yes or no. Of course, MS is not hereditary although it is possible to be genetically predisposed if family members have MS. Not a definite YES though. See this link

 

This forum is filled with people who have had a long road to diagnosis. My own journey was 11 years and I had had symptoms from my early teens. Other MS patients find out definitely very quickly but I don't think that makes them the 'lucky ones' as no one wants MS! Try to be open-minded whilst realistic. That is my advice after 20 plus years with MS.

 

The uncertainty of MS is called Limboland - try a search in the box at the top of the page for some stories but remember, no two people or diagnostic experiences will be the same.

 

2 hours ago, Daze2018 said:

...please could someone talk to me a little about their experiences with lumbar puncture if that's okay...? I'm scared I won't be able to be still during the procedure because of the back pain.

Lumbar punctures are not easy to go through but, in my own experience, you can get over them better by staying hydrated (to heal the loss of fluid around the brain), stay in a darkened and quiet room and rest horizontally - in other words, go to bed as soon as you get home. Better still, ask to be able to rest after the LP in the hospital before you have to make the journey home - although hospitals are rarely quiet places. 

 

With regard your spinal pain... my feeling is the doctor performing your test is the best person to ask. The position always used to be the foetal one - on your side with your knees tucked up under your chin. However, I had mine sitting forward across a pillow because by spine is recessed in my back. Remember this - the test itself is not a lengthy one so try not to worry you won't stay still. Just tell the doctor your concerns.

 

Here's some more information on this forum:

 

Lumbar puncture

 

Symptoms and Diagnosis

 

Please keep in touch with us and look around the board to 'get to know' some of us.  :chat:



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Daze2018

Thank you ever so much for your response!  I'll go and check out the links you provided.

 

I'm really sorry if I come off as a bit of a worrier, this has been a scary 7 months. I'm so sorry your diagnosis took 11 years, that's quite a long while. And thank you again for your response. :) 

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Sluggish
Shirl
25 minutes ago, Daze2018 said:

I'm really sorry if I come off as a bit of a worrier, this has been a scary 7 months.

Scary is quite a mild response to the uncertainty of a MS investigation. I went from petrified to curious to accepting and back to scared several times a day in the first few years. Even now, I fond the variability of symptoms irksome (being polite!)

 

Not only will you be confused by the whole drama but you are also poorly - something Neuros are prone to overlook! Just keep plugging away without allowing total fear to overtake you. One day at a time... it is all you can do. 



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Stumbler
15 hours ago, Daze2018 said:

I'm really sorry if I come off as a bit of a worrier, this has been a scary 7 months. I'm so sorry your diagnosis took 11 years, that's quite a long while. And thank you again for your response. :) 

Great advice from @Shirl above.

 

The NHS works in its own sweet way. They don't feel our urgency for answers. But, now is the time to look after yourself. Sit down and take a deep breath. Then try and do something to divert your attention, e.g. a book or your favourite rom-com. Even pamper yourself. Chocolate and wine are good.

 

Try not to worry (I know, a ridiculous suggestion in the circumstances). You can't do anything about what's going on, but you may be able to stabilise it. It is medically proven that stressing releases chemicals in the brain, which are detrimental to our Central Nervous System ( CNS), an area which may well be causing your problems.............

 

:moonieman:

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John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Daze2018

Thank you both very much.  :) 

 

I'm trying to be kind to myself but I always go back to feeling guilty, like I've done this to myself somehow without realising. Then I think back on every time I did something silly in the past like drinking too much in my youth or something. I know it sounds irrational.

 

I'm struggling mentally too as I don't really have anyone I can talk to where I am -- strained relationship with mum, dad currently recovering from major surgery and both live across the country anyway.

I'm sorry to be such a downer but I like the look of these forums, lots of friendly understanding people which is nice. :)

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Stumbler

Never feel guilty. Everyone has a past, but not everyone suffers with these "hiccups" in their bodies.

 

Everyone struggles mentally when their body starts failing. Go and see your GP about how you're feeling mentally. There may be a requirement for a low dose anti-depressant, to allow you to start thinking positively. Having MS and being on anti-depressants isn't a sigh of weakness and is not unusual for a fair few of us.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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