Any advise welcome...

New diagnosis and before diagnosis
1

Hi All,

Just found out I have MS officially. Had a bout of optic neuritis and ended up on IV sterioids, after which they sent me for CTs and MRIs. Got a letter out of the blue to see a neurologist who sent me for a lumbar puncture. Due to see him again later this month, but in the meantime got a copy of a letter they sent to my GP which confirms to them that I have MS. Still don’t know which type of MS I have, but after over 20 years of pain in my limbs and being unable to walk, pins and needles, problems with my arms and back and now my vision problems, I will just be glad to get the diagnosis confirmed once and for all.

Any advice anyone can give me would be appreciated.

2

Morning Madhatter!

I can only imagine what that feels like! I’m in limbo and reading your post a part of me is envious and a part of me is so sorry you have been diagnosed with MS xxxxx how sad and mad is that!!

At least you now know what you are fighting and have an explanation for what you have been suffering xxxjenxxx

3

Hi Jen

Yeah it is a relief in a lot of ways. After years of being told it’s cause of a back problem, or trapped nerves causing pain or any number of other things it’s good in some ways to finally have someone say, “you know what, the problem is this”. Just another one of those things that life throws at you I guess.

Sorry you are in limbo though as I know how that feels. When they gave me the option of either waiting for 4 years to see how many more relapses I had, or to have the lumbar puncture, I told them straight, I will take the lumbar puncture. Where are you at with your diagnosis?

4

Hi Jen

Yeah it is a relief in a lot of ways. After years of being told it’s cause of a back problem, or trapped nerves causing pain or any number of other things it’s good in some ways to finally have someone say, “you know what, the problem is this”. Just another one of those things that life throws at you I guess.

Sorry you are in limbo though as I know how that feels. When they gave me the option of either waiting for 4 years to see how many more relapses I had, or to have the lumbar puncture, I told them straight, I will take the lumbar puncture. Where are you at with your diagnosis?

5

Where am I with my dignoses? Eww! it’s a long story!! x

In a nutshell I had a car accident 16 yrs ago - sublux fracture to my neck and damaged vertebrae in the thoracic & lumbar spine left me with lots of pain and problems down my left side. Then a few years ago I started having more neurological symptoms on top - but always blamed my back!

Over the last 5 years I’ve seen a haemotologist because my WBC inflammation ones are always really high, a gyno (!), and more recently an endocrinologist, an opthalmologist as I have damage showing on my optic nerve scan and loss of peripheral vision (diagnosed with glaucoma in both eyes (!) etc etc etc lol x

It must be!

As for me - basically I have had lots of things ruled out - but nothing definitely ruled in!

I’ve had 2 brain MRI’s that show multiple lesions in the frontal lobe and an enlarged pituitary gland - nothing in the MS areas. I’ve had a cervical and thoracic MRI that came back clear but were done on a faulty machine in a portacabin in a car park while a new one was being installed!

Symptom-wise I have stiffness, numbness and burning sensations in my right leg , the hug, electic shock type spasms around my middle, bladder problems - started with urge incontinence but evolved into numbness & bedwetting. My worst ‘relapse’ happened last February when I was literally housbound for 4 months unable to walk and horrendous fatigue.

I slowly got back on my feet and while I can’t describe myself as well I am functioning!

A month or so ago I suddenly lost the ability to write!! I couldn’t even write y own name - lasted a week and I’m left with slight problems now with my grip. This morning I woke and the vision in my left eye has severly deteriorated - but hey! What can you do!!

The neuro I saw was absolutely useless and rude (he was miffed with the neurospinal cunsultant because he’d rung him about me!)

I’ve been referred to an MS specialist now and a nurse. I’m having full spine MRI’s on a new machine next month. My neurospinal doc and my GP have now said that due to my clinical signs on examination etc they are now treating me as Probable MS - until proved otherwise! So at least I’m now getting meds that are helping me!

To be honest I’m almost past caring what the ‘label’ is - almost! lol

xxxjenxxx

6

Hi Jen

Wow, and I thought I had problems. I think I have been lucky with my Neurologist. I got referred to him after an out of the blue bout of Optic Neuritis and he went through everything with me. All the possibilities, then he gave me the option of the lumbar puncture, which I took. Have they given you a lumbar puncture yet? I know that according to what I’ve read and heard from other people that is how most people get a confirmed diagnosis. I haven’t been referred to anyone, such as an MS Nurse, the first I knew about my diagnosis was a copy letter I received that was going to my GP surgery confirming the diagnosis.

It’s funny you say that about having had an accident, and having had problems after that. I was reading somewhere about a number of people who had all had similar incidents. I know I did back when I was 12 years old I was involved in a car accident that left me with a lot of issues. Think that’s why the doctors were originally keen to blame to pain spasms in my legs to a degenerating disc I have. It’s almost as though incidents like that open a doorway to all manor of symptoms.

I sympathise with you over being housebound. I went through a similar episode about 6 years ago that lasted on and off for almost 2 years! I was not a happy bunny with that one. Thankfully though it did eventually correct itself.

Now I’m just waiting to see my Neurologist again which is in a couple of weeks time and he is going to go through everything with me then. Have to be honest though, I am not waiting around to see what he says. I was reading about this doctor in the US who came up with a diet for MS sufferers that is supposed to ease symptoms, so I am going to try that!

7

Eww! Life eh!!!

I suppose like any area in life there are good neuros and bad neuros! lol

The first time I saw him he seemed fine - he asked a few questions when reading the list of symptoms I gave him - he did a very swift neuro exam ie scratched the sole of my feet and tapped my ankles - and then told me he believed my problems are in the back of the brain and cervical area - I was with him no more than 10 mins and my big burly hubby was sitting next to me!

After the brain scan he sent a brief letter to my GP saying it was normal - and that was it!!

My GP was concerned so sent me back to the neurospinal consultant I’m under - who saw me within a few weeks - he and his team were shocked at the state of me and were conidering keeping me in but then said he would ring the neuro that afternoon as he was certain it’s neurological and I needed to be investigated more thoroughly than that!.

Very quickly I had my second appointment with the neuro - this time no hubby - and what a difference!!! He didn’t even have my notes - couldn’t find any trace of my scans - he had to phone his secretary to read his last letter out to him - which of course said zilch! He was arrogant - leaning back in his chair with his hands behind his head repeating "I have no explanation’ to everything I asked him!

He moaned about the neurospinal consultant for “sending these people to him and demanding he do something!”

I tried to explain that I was desperate for help - that this illness was wrecking my life - I had now been made redundant from my lecturing job because I had been off on sick for 4 months and that my life had become a struggle to get though each day - that all I could do was wait and trust that people like him would at least try to help me - but he kept responding with the "I have no explanation’!! I asked about any other tests he said there were none!

I started to cry and shake and got up to leave and at this point he shouted to me to wait for the nurse as she was giving me the name of the MS Specialist he was referring me to!

And that was it - in less than a few minutes he had managed to reduce me to a gibbering wreck - ended up sitting outside in the hospital car park absolutely sobbing and feeling totally daunted! I’ll never forget it!

I’m just so glad my GP & the other consultants are totally behind me and doing their best to help me! I wouldn’t go and see that patronising excuse for a man again if you paid me!!

As for the diet - to me anything is worth a try! I must admit when I’m eating healthier I do feel healthier - not ‘well’ as such - but I think it does make a difference if you try to keep a healthy lifestyle - you are fitter to fight!!

xxxjenxxx

8

Hello and welcome :slight_smile:

Diagnosis by letter - that sucks!!!

The basic types of MS are fairly straightforward to work out: if your symptoms have got progressively worse from the beginning, then it’s PPMS (primary progressive MS); if you have periods with bad symptoms interspersed with better periods, then it’s RRMS (relapsing remitting MS); if you used to have an RRMS pattern, but your symptoms have been getting progressively worse in recent years instead or as well, then it’s SPMS (secondary progressive MS).

The only reason it matters what type of MS you have is that people with RRMS are eligible for disease modifying drugs (DMDs) if they have had at least 2 “clinically significant” relapses in 2 years. Other than that, we all get much the same help: meds for symptoms, physio, OT, etc. Knowing what’s available and making sure you get what you need, when you need it, is one tip I would give: don’t wait for something to be offered; it tends to be those who ask, who get.

There are a couple of bits of post-diagnosis “housekeeping” to do when you’re ready. You need to tell the DVLA (and your car insurers once the DVLA have sorted a new licence out for you - they put you on a 3 year, free, renewable licence, in case your condition changes so you can no longer drive). You also need to check any paperwork that might have a critical health clause, e.g. your mortgage, because MS is a payable condition.

Even if you were expecting it, getting a diagnosis of MS can be a bit of an emotional rollercoaster, so be kind to yourself, don’t bottle it up and take it one day at a time.

Karen x

9

Hi, although it is never great to be told you have MS, it does draw a line under all those years of wondering what the chuff is going on, eh?

I`ve been tossed from one possible dx to another and back again.

last Oct, I was told I definitely dont have MS afterall.

My new dx is inconclusive and therefore it`s still up in the air.

I complained that i didnt have a dx after 14 of tests and seeing as many neuros.

So, to keep me quiet (huh, ask my hubby and he`ll tell you that is impossible!), i was given the grand label of;

idiopathic spastic paraparesis/cause unknown.

Neuro said it is an accepted dx for legal purposes/insurance/dwp/whatever.

You look after yourself, yeh?

luv Pollx

10

Hi,

Thanks for the advice. So many things to think about. I wondered about the DVLA after I had my bout of Optic Neuritis. I guess it’s to be expected. Still, just one of those things to add to the list of things to be sorted. What a wonderful world we live in!