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Progress at last but at a cost

I thought I would update readers of this forum. In December last year I posted about my awful management and referral pathway to my diagnosis of RRMS. After a huge struggle with the GP and subsequent private neurologist consultant who said that I’d had ms for 20 years and gave me a course of steroids with routine follow up with a general neurologist in 4 months with no specialist referral. I therefore referred myself to the Ms nurse who could not refer me to the ms consultant specialist so my new GP did. I was making great Progress until last week when I developed new symptoms, rang the Ms nurse and was given an urgent referral to see the ms consultant 2 days later, another relapse. But no messing around this to time, straight on steroids, gabapentin for pain and starting on tecfidera immediately. Mri scans again in 3 months and ms team follow ups in place. Ms consultant says that I have had ms for over 35 years with at least 4 flare ups, demilination was picked up on a mri scan for long term tinnitus in 2013, this was completely ignored by the ENT consultant. Makes my blood boil that people with ms often have to go through purgatory before the get the right treatment. Who knows based at on my history of ophthalmic neuritis in 1997 and mri findings in 2013, these two recent relapses may never have happened. But at least I’m now under the care of the right team with a great plan in place. Makes me much more optimistic. My message to anyone else who is hitting brick walls, even though it’s difficult keep driving forward for what you need and deserve!

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hi KT

well what a terrible palaver.

i’m fuming on your behalf.

hope you do well on tecfidera.

that private neuro was worth every penny.

carole x

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HI kt201.

I’m so glad you’ve finally been diagnosed and hope the meds start to work.

I’m getting really annoyed with the whole system and waiting, I’ve even started to get agitated at home and hubby bless him keeps asking if I’m okay. I just want to scream at him and say ‘‘NOOOOOOO NOOOOOOO Im not freaking okay…’’ but I dont. I just say of course I am. It’s not his fault and theres nothing he can do.

Good luck with your Neuro Cathy, Limbo isn’t a nice place to be.

Cat

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Hi Cathy

Please don’t feel that you have hijacked a post. We are all here to help each other. I agree with the comment about keeping a diary and taking someone with you. By seeing the consultant privately in the first instance and getting some feedback you can get back into the NHS system. At my private consultation I told the consultant that I could not afford to have any investigations privately and requested that he transferred me into his NHS list, which he did. My advice remains after this has happened to keep pushing your case forward. Good luck and try not to worry, it doesn’t help!

KT

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Thank you so much for that advice. Very helpful. Yes, my husband is coming with me.

Oh dear…now I’ve deleted my posts your thread has lost its continuity. Sorry.

I shall read some of your other posts too. Thanks.

Catherine.

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Hi Cathy,am so angry over the way u have been treated…I like u have had m.s for years ,not diagnosed till April last year

It was when I had a stroke they found lots of lesions ,so that finally started the ball rolling,went to m.s specialist,then neurologist

Then m.s nurse,therapy,now going on d m d on 23,

I know it’s easy to say but take it easy don’t worry too much you will get there.

Sorry if I have butted in with other people

Hi Iam 26 year old from the age of 20 I have suffered from unexplained pain and fatigue, in 2017 I had a spinal fusion of L5 \s1 always had extremely painful areas in my back . In June this year I woke up one morning to have excruciating pain all down my left arm and in my neck I was admitted to hospital where I had various scans etc . They ruled out and bone damage etc . The doctors have diagnosed me with what they thought was parsonage Turner syndrome ( biracial neuritis ) its a Attacks in your nerves but it’s only supposed to be short term I have now left hospital . I had nerve studies done in hospital and as the doctor read the report back to me he mentioned that the report said ( some symptoms presented its self as Ms ) !!! Since my arm pain started 6 weeks ago , I have lost all feeling in upper shoulder , I can’t write , can’t sleep , can’t bitter toast , Iam totally useless with my arm now . I feel confused like I don’t know where I am sometimes My body is just in pain some times if I bang my skin it hurts so bad And my balance I feel like I can’t walk in a straight line And the bit what has made me scared it the shacking of my head and arm Iam also very stressed and anxious And constipation is very unpleasant Iam going to go and see my doctors I want to know some answers and maybe what people think . My hospital treat me very poorly and I left with somebody telling me that there was nothing they could do for me . But the doctor said the word ( MS ) Thank you and any comments would be great