appointment

New diagnosis and before diagnosis
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Hello all.

I have an appointment with my neuro on 3rd March. This is a follow up to all the tests he ordered, when he admitted me to The Walton Centre, Liverpool last month.

He is a wonderful man and I would have been in limbo for even longer than the 22 years, if I hadnt seen him.

He was neuro no. 17…I`ve previously had 4 MRIs, 2 LPs, 2 EMGs, 1 VEP and gallons of blood taken over the years.

I had presented with typical PPMS right back in 1998/99. But I was told no tests ever gave the neuros proof of my condition.

My symptoms began with a heavy left leg, then foot drop and falls almost daily. I had bladder and bowel accidents, arm and leg spasms and severe fatigue.

I couldnt do my job and retired early on ill health in 2000. In 2003 I pushed for a diagnosis and was given a 90% one of PPMS.

I needed a wheelchair part time and full time a year later. I was never given any DMDs or help to keep my mobility.

In 2011 my diagnosis changed to HSP…hereditary spastic paraplegia…I felt dreadful at the thought of passing this on to my offspring. Some years later, I had genetic testing, which came back negative, so that diagnosis was quoshed.

I had a big, fat ? on my head from then till last month.

At The Walton, Centre of Excellence in Neurosciences, a much more determined neurologist saw me and diagnosed me within I day`s admission to the hospital. He saw significant lesions on my cervical and thoracic spinal cord. He ordered lots of other tests to rule other possibilities out.

I had a letter from him yesterday outlining all the tests, with negative results, except for the MRI and LP which clearly prove PP Spinal MS. I am only the 2nd person he has seen with Spinal MS.

It is too late for my hopes of ever walking again, but I am so pleased to have my diagnosis. 22 years is a long time.

So people, I just thought my story may help you in yours....and I pray it doesnt go on anywhere near the length of mine.

Best wishes to you all.

Bouds xxxx

3 Likes
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Boudica405, Your strong and have been through so much. 17 neurologist! How did you cope all these years? I am glad you finally know what is going on and sorry that they did not diagnose you earlier. So what is your care plan looking like? You must be relieved. All the best. Lina x

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Hi Lina, my appointment with the neuro has been changed to 10th March. I cant imagine therell be much of a care plan. But I do have this fairly new worry about losing the strength in my hands. My fingers kind of droop when typing and sewing. Told the neuro and he did a carpel tunnel test, which came back negative. Hope the MS isn't travelling. How did I cope, you ask? Well, |Ive done a lot of swearing and getting mad! Kept most of it to myself. Hubby cant cope when I`m emotional…at all! He can make me a sumptuous meal, build a deck for me to sit on…but cant do with me crying…so I try not to and swear instead! xxx

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Hello Boudica405, I’m currently going through retesting after 6 years of deterioration, my problems, like yours started back in the 1990s but were brushed aside by GP until 2014 when I completely lost my balance and in your words " a heavy left leg, then foot drop and falls almost daily. I had bladder and bowel accidents, arm and leg spasms and severe fatigue." I now have a very weak left side including my arm and my hand is very weak. I’m also having speech problems, wrong word, lose words or gobbledegook comes out. MRI are again reported negative and although I’ve just had suspected optic neuritis which manifest in colour changes to left eye, there was still nothing on MRI. I’m booked for a lumber puncture in April and hope for answers but am very despondent I shall ever get answers. I’m cheered for you that you now do have answers after your brave fight to get them, I can only hope for some of your fortitude. Kind regards Abs

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Hang on in there Abs, I can relate 13years later and still not sure. So many symptoms, wheelchairbound and in the process of getting a new neurologist. Lina

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Hi Lina, Thanks for your supportive message, I can still do a few steps but mostly use wheelchair and mobility scooter(although I’m having problems balancing on it because my left hand isn’t grippy enough). I’m glad to have found the forum, as was feeling quite isolated in all this. This is my 2nd neurologist and he seems to be more proactive so trying to be hopeful! Regards Abs

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Hi Abs, whereabouts are you? I`m recommending an appointment with my Mr Wonderful neuro! he has 28 week waiting list and it is probably getting longer, due to my recommendations! Limbo land sucks! Bouds xx

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Yes, this forum can be helpful and supportive. I actually spoke to someone on the helpline a few months ago, just as well I was in a really bad state and they understand the frustration of it all. I think the scariest thing for me is seeing the deterioration in my health and not having solid answers. So I now focus on managing and try not to let it worry so much (easier said than done). I also use a mobilty scooter like you and having the same problem. I am on the wheelchair waiting list again (because mine is self propelling) trying to get an electric one the weakness in my muscles is getting bad. Someone from the CAB filled out a form for a grant towards a chair for me. Just take each day as it comes and I hope you get your answers sooner rather than later. Chin up. Lina

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Hi ya Bouds, I’m in the Midlands area unfortunately or I’d be begging for his details! Wish he had more neuro friends in my direction! Abs x

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Thanks Lina, like you I am unable to self propel, so I’ll look into this grant situation, will ask CAB in my area about it. Thanks again x Abs x

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Yes we have both been on a long journey. PPMS and age was a factor for me.

what got my diagnosis was the 2 positive VEP tests. I did find out and read that PPMS tends to present with ON first which i found odd. but it did with me.

I have never heard of spinal MS, and obviously neither had 16 other neuros lol.

there is more to MS then meets the eye. I think the variants are more then just RRMS. the trouble is the neuros tend to just focus on RRMS.

PPMS is rare and spinal more so although they say that PPMS is more involved with the spine. which makes ON an odd addition.

I wonder sometimes do the neurologists all get together and talk about MS and its varied forms?

I remember your journey well. I am glad you have finally found a roost to while away your days and I hope you wrote to the other neuros and told them where to stuff their wrong diagnosis lol. xxxxxxxxx

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Hi CC, well my Liverpool man will be referring back to my home hospital. I am seeing him on 10th March. I cant keep going to Liverpool. Its a chuffin long way! Hubby wont take me as he is unhappy driving where he doesn't know. Its 125 mile round trip. My kind bro-in-law took me to the 1st appointment and back. Then took me when I was admitted for tests. Then brought me home. He will be taking me for the next one too. It took us 2.5 hours the first time, but only 1.5 home. The parking there is unbelievable as there are 3 hospitals on the site. I am wary of going back to see the neuro who discharged me from my local hospital. There are 2 other neuros. I will ask to see them, but cant be sure, who I`ll get. I didn’t know PPMS is more a spinal issue. Because The Walton Centre is highly regarded and is the ONLY centre for neurosciences in the UK, it will attract more funding than little old Halifax! Hence their scanners and expertise aren’t up to scratch. When I think of just how many people are walking…or wheeling…round with no diagnosis or the wrong diagnosis, I feel like shouting from the rooftops what happened to me. And summat else that makes me mad, had my correct diagnosis been reached years ago, I may (just maybe) have been saved from all these years in a wheelchair and be so utterly dependent on carers, which is costing me my retirement nest egg. Grrr! There you have it. Bouds xx