So fed up

New diagnosis and before diagnosis
1

Hi all,

Have come on to have a moan, is all I seem to do at the moment.

Have seen the MS nurse today for the first time and they were about as useful as my right leg is. I am currently signed off work for 4 weeks as I had become so fatigued and felt so unwell, it was like a vicious circle. the physical symptoms exacerbating the fatigue which in turn exacerbated the physical.

I was hoping the MS nurse could bring forward my neuro appointment as I have new symptoms on my left hand side, which differ from those on the right and where all my previous symptoms had been on the right.

I have developed bowel difficulties and my walking, bladder and mental impairment are getting worse and my feet are excruciatingly cold.

He is not though going to bring my appointment forward and says while the symptoms may be new to me, they are more than likely due to the neck lesion. When I questioned what would change when I saw the neuro in October as he was not planning on doing new MRIs, and would I still be left with no answers, he said ā€˜probablyā€™.

He also didnā€™t seem to like me saying that I felt abandoned and left to get on with it, with little guidance, treatment or medication and got quite sarcastic.

I donā€™t understand how they are ever going to be able to tell if I have MS or not without doing new MRIs and what, if new symptoms do no prompt them to do this, will make them consider doing new MRIs.

My walking has become worse and worse and when I asked why this would be, as surely if the same lesion was responsible, would it not level out or show some improvement rather than worsening, he said, ā€˜it can be a bit of a roller coaster.ā€™

He has given me a prescription for pregablin, & will do a referral to the continence nurse, which I know will do no good as been down that route before, and also for physio which I also struggle to see how that would help with heavy, tired, aching, weak legs and foot drop. Might just be that I am a bit of a downer though.

I left in tears and really donā€™t know what to do next.

Sorry for the moan, trying not to stress my son as he is doing his A levels.

Thanks for listening

A sad and sorry

Sally x

2

Hi Sally

so sorry to hear how youā€™re feeling. Limboland is truly a lonely place. Reading these forums has been an eye opener to see how we all have such different difficult journeys. These forums are a godsend. I know I canā€™t make you feel better but we are not alone.

hugs

x

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3

Hi Sally, if you canā€™t moan here where can you I am not as far on my journey as you are but have also met some in the "caring"profession who have been downright callous. I thought MS nurses were supposed to be helpful and supportive.The one you have seen seems to have come from the same mould as the pain management consultant who told me to expect to be as I am and to go and get on with it I donā€™t know what IT is. Some doctors have about as much empathy,compassion or personality as a brick I even told one I would be better off seeing my vet who treated my pets with more professionalism than he did his patients. Is there any way you can ask to see another nurse yours sounds a real ā€œtoolā€ it could be that you are not compatable or at best he was having a bad day.Take care and good luck to your son for his A Levels you worry for them donā€™t you?Sue

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4

Thanks Fish and Sue,

Like you Fish, this has all come as quite a shock reading on here how long so many people have to wait for a diagnosis and how many are just left to ā€˜get on with itā€™

Agree Sue, some seem to have little empathy. I was sat crying in sheer frustration and desperation in front of him and he said nothing, not even to offer me a tissue, lol.

Trying desperately not to stress the son anymore than he already is with all this but it is so hard, being just the 2 of us, to try and sheild him from how I am feeling. He can see it for himself, and agree, I worry almost more about the effect on him than me and hope it does not affect his exams.

Thanks for your responses, hope you get some progress soon Sue. Guess we just have to keep on, keeping on.

Sally x

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5

Oh, I also said to him that I appreciate a diagnosis of MS can be problematical but so was living with the effects of having MS symptoms with no diagnosis and how that impacted daily life and made access to guidance, support, treatments, therapies and medications much harder.That was when he got a bit sarcastic and said ā€˜where would you like me to start with that lotā€™.

He is the main MS nurse for this area, so does not bode well for our future consultations

6

I had the bad luck to be seen by a baby minion doctor in the midst of my journey. My neuro had prepared for a RRMS diagnosis which depended on more tests. At the next meeting I was seen by his senior registrar, who despite not having all the test results said my symptoms were all due to vestibular migraine! When I got home I sobbed not with relief but anger as I knew he was wrong. He was so arrogant! That week I received a letter from the dept asking me to return for another appt the next week. This time I was seen by the MS specialist who confirmed probable RRMS. I saw her again last week and I start Tecifedera very soon. She was not happy with the minion! So hang in there, there are good doctors out there we just need to pray we meet them. Good luck both of you.

7

Thanks Fish,

Iā€™m pleased you have got a good one. I just despair as at the moment, all I can see is this dragging on and on as the consultant is not going to have any new clinical evidence to diagnose me with one way or another when I see him again in October with no MRIs in the pipeline, with me all the time getting slowly but surely worse.

If it is a clinically isolated episode that has left me with physical limitations, that I have to learn to live with and manage, that would be fantastic news, but consultant has said he thinks MS is the most likely explanation but cannot say definitively. And that is what bugs me. He is not going to be able to say yeah or nay come October either with no new clinical evidence and I shall be nearly 2 years on and no further forward.

Sally x

Good grief, I am wingey today.

8

I wrote a reply then swiped it sorry - just a short version now. Have you been referred to the Physio dept? They seem to have more listening time and have so many helpful techniques and equipment to make life more bearable before and after diagnosis. Worth asking for help from them.

9

Yes Fish thanks, the MS nurse has said today they will do that.

10

Hi Sally

What is your story ? How long have you been having problems and how did they start ? Also have you had any MRIs or LPs ?

I have neck lesion and right foot drop too. No definite DX yet and CIS has been mentioned along with radiation myelopathy from treatment I had years ago. I had one attack which I think led to the neck lesion - but I got better and then a year later foot drop started slowly to raise its head.

Sorry for all the questions - it is just I am interested in a story that sounds like mine.

Moyna x

11

Hi Moyna,

ā€‹Questions are good, helps to feel we are not so alone with all this stuff

Symptoms started about 18 months ago with foot drop and weakness in right leg. For about a year it would only come on when I had been walking quite a bit or for a long while and would not be noticeable otherwise. Also started having problems with bladder, urge incontinence but didnā€™t connect the two.

To cut a long story short, other symptoms developed, same weakness in right arm and hand, particularly with fine motor skills, such as holding a pen, getting change out of my purse and have progressed from there really so that now have problems with just about everywhere, doesnā€™t seem to be a bit of me that works properly Fatigue, dizziness, balance, mental acuity and walking has worsened so I donā€™t feel safe.

I have had 2 MRIs, the first head and spine, showed lesions in neck and couple in brain, the second was head only 3 months later and consultant said no significant changes, hence why he was unable to give firm diagnosis. Had evoked potentials and VERs + loads of blood tests.

I have a decided aversion to having an LP and consultant says he thinks it would add little at the moment so I am reluctant to go through one if it will not help with a diagnosis.

He is currently calling it a clinically isolated episode with de-myleination but says MS is the most likely explanation.

Hope this helps.

How about you?

Sally x

12

Thanks Sally,

My story dates back to 1990 when I had lā€™hermittes. I had MRI and LP VEPs etc and all very fine. They said I had some inflammation following radiation treatment for hodgkins lymphoma. I recovered and had no further symptoms until 2005 when I had numbness on left arm. I had another MRI which was fine and told it was a trapped nerve. I recovered again and then in 2008 I had a sort of attack invloving right arm weakness, numbness and jelly legs and fatigue. GP said as my MRI in 2005 was normal this episode was not neurological. I ended up on thyroxine as he thought I was hypothyriod. Anyway I seemed to get better after a few months. Then a year later when out for a long walk I got this right foot drop that went away after I rested. Overtime this gradually got worse and became apparent after a shorter walk. I went to my GP claiming I had foot drop but as I was able to resist him pulling my foot down (as it wasnt fatigued at the time) he said it was not foot drop. At the time he thought my problem was depression and I ended uo on citalopram. Anyway after a while of the GP not taking me seriously I booked an appointment with a private neuro in 2011. An MRI revealed a cervical cord lesion and he said it was delayed radiation myelopathy and not MS. Anyway in 2012 I saw a neuro on the NHS and new MRIs were done as well as a lumbar puncture. The Lp was clear of ā€œMS markersā€ and I was told this was a CIS. My only thoughts are how can you recover from a CIS then have slow progression of foot drop starting 6 months after you have recovered from the attack. I did ask this question and all I got was ā€œYou are an unusual caseā€.

I feel I could relax if the clear LP could completely rule out MS. The consultant told me that it does rule out MS but on this site I hear that it cant. There are people with MS and clear LP.

To be honest I feel that I may have PPMS, due to my age (50) and the fact that I dont have relapses (except the first one) but a steady decline. Although I do seem to have thankfully plateaued and my right arm and hand are practically normal now. My bowels are dodgy but am told that is only IBS - the bladder is fine although for a while a few years back I was prone to UTIs.

ā€‹If it is PPMS then I know they can do nothing. I am currently taking Biotin and a range of anti-oxidants and I do honestly feel these are stopping me getting worse and help to keep my energy levels up.

I hope that you get answers soon.

Moyna x

13

Hi Sally,

As already said, you are not alone!! I am off to see the Rheumatologist later today. I have just been having a flare up of whatever illness I have, it has been three weeks so far and for the first time in a long time I had to take time off work!! I am back there now (coffee break) but muy appointment has been brought back from July as my Dr was very concerned with the fact I am now mainly using a walking stick.

I had a lady see me last week regards PIP and although she cannot comment regard my claim she did say she is a trained nurse and sees a lot of people & I (in her opinion) have pretty much MS symptoms through & through. The Neurologist however says no way!!

What I am trying to say and having my own moan at the same time, is that (as I said at the top) You are not alone and thankfully we appear to have a great place here to let off steam. So moan away is what I say.

All the very best

Ian

14

I was wondering what foot drop is can anyone explain x

15

Hi Sparky

Foot drop is when your foot drags along the ground itā€™s difficult to lift and can cause you to trip. I found that I couldnā€™t bend my toes it was as if they were paralysed yet when I touched them I could feel them. The Physio gave me a brace called PUSH which really helped and eventually the foot corrected itself. Hope that helps.

16

Thankyou thats explained it very well i can wiggle my toes fine i find i tend to shuffle not drag its my muscles in my legs that feel paralised thankyou again for that all the best.

17

Just to add though that it could still be foot drop as when I was able to move my toes I still had a problem worth getting advice from Physio. Iā€™ve got a new symptom today my right thigh seems to have developed tight band round it. Iā€™m assuming it has been triggered by the heat. Iā€™m using a stick for my left leg (not for foot drop for muscle weakness and balance) so can still get about but my gait becomes evermore interesting!

18

Oh bless you ive wondered if a stick would help me my left side is weak and im off balance but as im not diagnosed with anything id feel that people i know would think im milking it but its awful cant walk far before my muscles start tightening and the pain comes

19

One thing Iā€™ve learned through this process is to use anything that helps make life easier. Iā€™m using Aidapt folding sticks I got my first from the NHS and then took the plunge to buy something colourful. Iā€™ve now got three- same stick in green, blue and yellow. They are not expensive. I got two from the mobility shop and one for Amazon. Without them I walk as if Iā€™m in a snow drift very very very slowly and lose balance easily. With them Iā€™m like Speedy Gonzales! Lol! Slight exaggeration! Donā€™t worry about diagnosis and what people think. Walking in the sunshine lifts our mood and thatā€™s what we need most of all. Have fun stick hunting.

20

Aw thanx fishgoose. youre right i shouldnt worry about what people think my family understand what im going. Through had a few remarkfrom some friends and neighbours saying i look fine to them if only the knew the pain along with blurred vision pins needles electric shock and fatigue. You have made up my mind off stick hunting lol x