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Your support has really helped me

Hi,

For months now i have been posting on here due to my odd unexplained symptoms. Your replies have really helped me and work through this maze in trying to get a diagnosis.

Fast forward to yesterday whnen i went to see a private neuro for a second opinion. He is convinced i have a neurological condition and said he will get to the bottom of it. I had all the usual neuro tests and when i asked if if they were ok his rely was No nothing is right with you. That was quite a shock as local neuro had always told me all my tests were normal. Private neuro said there is something on spinal cord and brain but did not put a name to it. I did ask him if when he looked at my scans and saw no abnormalities, he said that an mri did not always show the problems and he was more interested in symptoms. He then mentioned having a LP.

Whatever is happening to me seems to be giving me alot of sensory symtoms. The running water feeling which was in the odd spot is now affecting many parts of me. My legs sometimes stomp when i walk and i hav balance issues. Im 57 and can not remember any periods of relapses but would be suprised if it PPMS because i can get around albeit slowly and with wobbles.

Once again thank you to everyone for your just being here and understanding the trials of trying to get a diagnosis.

Although i still dont have a diagnosis i feel more confident that in time i will have some answers.

Thank You

Christine

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Hello Christine,I’m really pleased that you re beginning to get some answers. Being in limbo is not easy, i’m there too. Its great that your new Neuro is taking you seriously. I feel like you that this forum has been a massive support, I’m not sure if I’ll ever find out for definite what has caused my problems but I always find that talking to people on here really helps.

Michelle x

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Hi Christine, a pleasure to help.

I still think it could be PPMS. Some people can continue walking for years after dx of PPMS…and although I use scooter or wheelchair outside I can still walk around my flat ok and with a walker I can get around the building.

Glad he’s going to give you an LP. It’s how I got dx and although I was dreading it (went in there looking like a woman going to her own execution) it was fine. Just felt like someone was pressing on the base of my spine. Was well worth it to get a positive dx.

All the best,

Pat xx

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If you do need to have an LP make sure you ask for an ‘atraumatic spinal needle’, as it significantly reduces the risk of headache…

This guide explains the process.

http://www.clinicspeak.com/lumbar-puncture/

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Hi shellyonthebeach,

Yes he seamed pretty clued up and interested enough to find a cause. Can i ask you how long you have been on this journey and is there any indication of whats causing your symptoms?

Christine

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Hi Pat,

I guess iv something to look forward to or not with the dreaded LP,nothing has been arranged for it yet so panic not set in.

One thing that confuses me with ms is apart from sensory symptoms which i have alot of do motor symptoms appear at the same time. I am right in thinking that motor symptoms are things like mobility and srength.

Christine

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Thanks whammel i will have a look at that.

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Hi Christine,

I had a LP five years ago. After two aborted attempts I agreed to have one on the condition that I had sedation. The neuro agree (reluctantly) but it was done and I don’t remember a thing about it.

The criteria they have to meet involves over half a dozen tests including LP. It was the last resort but it finally confirmed my MS. I have had to fight for tests to be done.

Regards,

Anthony

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Hi Anthony,

Iv just read some info on the procedure and the risks seem low so thats one less thing for me to worry about.

Did you have the LP because your condition could not be diagnosed with mri alone?.

I hope if i hav it done the person doing it has done it many times before.

Christine

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Christine,

Being in limbo is a horrible state. I had my first MRI scan in 2010, when I was 57 and that was inconclusive. It was not until my second set of MRI scans in 2014, when I was 61 that a diagnosis of PPMS was reached.

My worst symptoms are poor balance, deterioration in walking and loss of core strength. There are, of course, the usual bladder and bowel issues but I do not suffer unduly from fatigue and loss of concentration. I have a series of exercises to do daily and they make me feel better, if nothing else.

When I was finally diagnosed my first response was a sense of relief; suddenly my health history made sense.

I do hope you receive a diagnosis soon so that you can make sense of what is happening to you.

Best wishes

Alun

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Hi Christine, hope you get answers soon. When I had my Mri it was inconclusive and was dx after LP. LP wasn’t too bad for me but I was glad when it was over. I was dx with PPMS but after discussion with neuro about the mild symptoms I’ve had over the years was then dx SPMS.

Although I new things weren’t right I was still shocked at having ms because I didn’t think things were bad but 7 years on things have got progressively worse although I can still walk a a bit. I can walk not too bad in house without shoes on but outside I need crutches and rollolator and wheelchair for longer distances.

all the best

Mags xx

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Forgot to say I’m 57 as well

mags xx

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Hi, some people have more sensory symptoms than motor. Yes they can appear at same time…or come and go even with PPMS. I have more sensory symptoms than motor but my walking has gradually become more difficult.

And yes motor skills are mobility and using your hands etc. I don’t think it includes strength. It’s the brain not sending the right instructions so for instance you go to put a fork in your mouth but your hand goes off in wrong direction.

Remember MS is in the central nervous system so it really can mess with absolutely anything…and it’s why it’s so different for everyone because it really depends where lesions are situated.

The fatigue and feeling unwell are to do with the immune system constantly battling the MS believing it to be a foreign body…hence it’s auto immune…in other words the immune system is attacking your own body.

It’s far more scientifically complex than that but that’s basically what’s going on.

Hope that helps.

Pat xx

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Thanks Alun,

I have balance problems too which have got alot worse recently, infact everything has got alot worse. It feels like my nerves are raw and reacting to everything specially touch, sound and temp.

I keep trying to second guess what the neuro was thinking but i could be way off.

Im so glad i have people on here to learn from and share it all.

Christine

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Thanks Mags,

In the house i can move around ok but when i think about it iv lots of things to hold onto. Outside i can manage short distances but i always feel wobbly and concentrate on my walking, its no longer spontaneous.

This evening iv got a spongy feeling to my feet and the running water sensation which never seems to stop now.

Was it the same symptoms that you have now that led you to your first mri?

Christine

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No my symptom that led me to gp was my left leg dragging after going for a long walk. It had been going on for a while but it wasn’t until we were on holiday in Italy celebrating my 50th birthday that it suddenly dawned on me that it was happening on smaller walks as well. I promised my husband I would see the go when I got home. There is only so long you can be n denial for.

As they say this is the snowflake disease no one has the same symptoms.

I really hope you get answers soon it must be hell being in limbo. I was lucky in a way went to the dr on the July and was dx by February.

Try not to worry about the the LP. It is scary but I think it’s more the fear of the unknown.

Let us know how you get on.

Mags xx

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Hello Christine,

I believe that neurologists like to follow guidelines called the McDonald Criteria.

Each of the four main types of MS have their own list of guidelines.

PPMS has the following:-

Continued progression for one year (determined by looking at previous symptoms or by ongoing observation)
plus any two of:
One or more MRI detected lesions in the brain typical of MS
Two or more MRI detected lesions in the spinal cord
Positive tests on cerebrospinal fluid drawn off by lumbar puncture

If your neuro can’t find lesions in the brain AND the spinal cord then they’ll need a LP to meet the Criteria. I’m seeing a neuro on Tuesday to find out what she thinks about my MRI that was done in October last year.

I’m armed to the teeth with diagrams of the nervous system and I expect her to tell me exactly where my lesions are.

I’ll let you know what I’m told.

Don’t worry about the LP. They wouldn’t get anyone without the correct training to do it. In the ones I had, there was a nurse to hold my hand, as well as the doctor who does the clinical bit.

Yours

Anthony

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Hello Christine,

I believe that neurologists like to follow guidelines called the McDonald Criteria.

Each of the four main types of MS have their own list of guidelines.

PPMS has the following:-

Continued progression for one year (determined by looking at previous symptoms or by ongoing observation)
plus any two of:
One or more MRI detected lesions in the brain typical of MS
Two or more MRI detected lesions in the spinal cord
Positive tests on cerebrospinal fluid drawn off by lumbar puncture

If your neuro can’t find lesions in the brain AND the spinal cord then they’ll need a LP to meet the Criteria. I’m seeing a neuro on Tuesday to find out what she thinks about my MRI that was done in October last year.

I’m armed to the teeth with diagrams of the nervous system and I expect her to tell me exactly where my lesions are.

I’ll let you know what I’m told.

Don’t worry about the LP. They wouldn’t get anyone without the correct training to do it. In the ones I had, there was a nurse to hold my hand, as well as the doctor who does the clinical bit.

Yours

Anthony

Hi Christine

I hope you get answers soon, limbo is horrible, at least when you have a DX, whether MS or something else, you then have a reason to attribute your symptoms to, something to blame I suppose.

Back in the 80’s most hospitals didn’t have an MRI, so I went to Bridgewater, two and half hours away, for mine, then a year or so later, another MRI at Bridgewater, followed by a lumbar puncture att the local hospital. I also was given a myelogram at the local hospital before DX.

What first sent me to the GP was a numb patch on one leg, together with a feeling that I could only describe as trying to walk in mud or treacle. GP monitored it for some time, and as the patch was increasing, sent me to a neuro, and after what seemed like a life time, was DX, and with no remission or relapses, was told it was progressive.

I feel lucky (?) in the respect that yes I have progressed and use a wheelchair, but I consider it has been a slow gradual decline, and life is still worthwhile, so if you do get a DX of MS, please do not think it is the end of the world, you will cope.

Take care

Pam x

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Thanks Anthony,

This new neuro has not yet seen my scans but after ge examined me he said that there was something on the spinal cord and brain which was causing my symptoms. What i dont understand is that if lesions are causing the problems and they are not seen…where are they?

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