advice about DMTs please

New diagnosis and before diagnosis
1

Hi all,

I recently got diagnosed with RRMS.

I went to see my Epilepsy neurologist and mentioned my pins and needles and vertigo, he ordered a MRI and blood tests. A few weeks later I asked my GP for my results and he said so nonchalantly that i had several Lesions and my brain and spine and Dymylenation was present. He then added that it was likely MS!!! 2 months later I had another MRI with contrast and no new lesions were present on my spine but 1 on my brain.

Move forward to December and I was seen by a neurologist at the Queen Elizabeth Hospital in Birmingham (Dr Woolmore) he said i had RRMS and would see a ms nurse soon.

Since this appointment I have been given Gabapentin and Ropinerole for my muscle spasms and jumping legs. I also take quinninne and Tegretol for my Epilepsy.

Since having this diagnosis my life has been terrible! I feel like I have been left, my GP is not very helpful and told me that people with MS do not experience pain yet i am in pain constantly. I stopped taking Gabapentin because they made me put weight on and also made me so sleepy. My GP has just prescribed Lyrica but only 50mg twice a day

I had a letter from Dr Woolmore that said I am to start first line DMDs as soon as possible, I have an appointment on the 23rd of Jan to see my MS nurse.

I have been prescribed anti depressants and have an appointment to see a Psychiatrist.

I live,breath, sleep and eat MS! It consumes my brain yet I know nothing! I am constantly looking for answers but feel like I bore people with my constant moaning! I am very sceptical with all medical staff because I feel it is all about money! I think they offer whatever is the cheapest medicine with little regard to the fact that these are poisons that im going to be putting in my body! The side effects seem so bad, I very rarely see positive stories.

I am asking for opinions whether they are positive, negative or indifferent. I feel so alone and very down about the whole DMDs decision. What will happen if I dont have them? Is this a relapse? What does a relapse mean? Do people with MS get pain? Are there other drugs they could give me relief from the symptoms I have ( no sleep, restless legs, pins and needles in hands and feet, drunk walking, pain in legs, spasms and cramp, extreme fatigue, weakness on left side) etc etc etc… lol.

Thank you in advance.

Julie xx

2

I too am epileptic and have been on vimpat lacosamide… I have been on keppra etc and found lacosamide for me have very little side effects… My doctor at the time said lacosamide is ok with various tablet combos so maybe try this and perhaps your complications will be reduced? Obviously ask your doctor first !! All the best

3

hi julie

your gp is wrong. people wth ms DO have pain.

it is a subjective experience and your gp just wants it all to be objective.

i am so grateful to have had a brilliant GP throughout my diagnosis.

the first line DMDs leave the stronger ones for if they don’t work for you.

some people insist on having the stronger ones first but they present a very informed argument.

for myself i chose copaxone which although it is a daily injection it fitted into my life more easily.

i didn’t want the flu-like symptoms of the beta-interferons

after 5 years i had bad injection site reactions so i went on tecfidera which has an impressive reduction rate in relapses.

maybe tecfidera could be given as a first line choice.

the very big guns are lemtrada and tysabri so if tecfidera stops working for me i can hopefully switch to one of these.

there may be new ones that i haven’t heard of.

the whole point of the DMDs are to reduce the number and severity of relapses and the consequent disability that is caused by them.

i have nothing but praise for my treatment at salford royal and the outreach at breightmet clinic.

this is because my aunt had ms in the 1960’s and DMDs were not available then, it was awful to see her visibly decline before our eyes.

other treatments that could give you relief are LDN (Low Dose Naltrexone) which you cannot get on the NHS, you need to see a private GP for the first prescription but then your GP should prescribe it for you.

it costs about £20 a month.

hydrotherapy is very soothing for leg pain and helps strengthen the legs.

magnesium oil is brilliant for rubbing into the muscle that is cramping/spasming (holland & barrett do a spray).

neuropathic pain needs neuropathic pain killers such as gabapentin, lyrica, baclofen and amitriptyline.

these all have side effects as you have found.

nowadays i only take amitriptyline in the evening as it makes me sleepy.

mindfulness meditation really helps when it all gets too much.

find out where your nearest ms therapy centre is.

i go there for Hyper Barric Oxygen Therapy where you breathe pure oxygen through a mask in a decompression chamber for an hour and a half. take a book or you’ll die of boredom! it is a treat to have that time undisturbed for reading.

so read up on it all.

believe in yourself, try to believe in the medics.

this is your time to be a warrior and fight back against ms.

carole x