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looks like I got progressive ms

After approx 4 years of feeling exhausted after walking a mile having a rest then being able to walk back, the distance started to reduce within the last year. 12 weeks ago I was down to 1/4 mile, realising this wasnt me being lazy, i went to neurologist. Mri showed lesions in brain and neck, lumbar puncture came back ok except for one test, and i had a eye test to see how long signals get thru my brain. This showed probs with my left eye. Been back to neuro for him to tell me what ms was! Already had idea i had it so had read all the books. had baclofen for a few week, that didnt do anything. Neuro says he will see me In 8 weeks. Hes not even a ms specialist. Booked me in for physio… what can neuro do in 8 weeks that he couldnt do last week when i saw him. Just seems like thats it Im on my own. Is this cos its progressive and nothing can be done. I can only walk about 50mtr now and legs are like lead. Cant work, think im gonna pay 160 to see SAME bloody ms doc that i am seein in 8 weeks time. Does this sound normal. I am at pinderfields wakefield.

Hi Toby,

I’m sorry to hear about your diagnosis.

I’m unclear from your post whether you’ve actually been told it’s progressive, or whether you are concluding that from the fact it wasn’t treated as an emergency?

I think they deliberately try not to bombard you with too much information and decisions on the day of diagnosis, as many people will be in shock, and unable to take in the rest of the conversation. So yes, I believe it is normal for nothing much to be planned or decided on the day, and for them to schedule you in for another chat in a few weeks time. If it is progressive, then yes, unfortunately you are right that what can be offered will be symptom management only. However, I do not think that is the reason there is a wait to be seen again. MS (of whatever type) is regarded as a chronic condition, and not a medical emergency.

By your own admission, you have probably had it some four years, at least, so even if there is a suitable treatment option, they won’t see the necessity of starting it the same week.

Completely your choice, but personally, I would not pay to see him sooner, as I do not think it will greatly influence either your current circumstances, or your long-term prospects. He’s not going to come up with anything that will get you back to work next week, if that’s what you were hoping.

In the meantime, though, don’t rule out your GP as a source of support. Most drugs for day-to-day management and relief of symptoms do NOT require authorisation by a neuro, so if your GP’s any good, they should have some ideas of things to try (alternatives to the baclofen, for example).

My own GP was reluctant at first, and I seemed to end up playing piggy-in-the-middle in a bit of a dispute between them and the hospital, about who was supposed to do what, with the surgery not wanting to touch it, but the hospital asking: “What’s the matter with them? They can do it!”

Sadly, it ended with me having a shout (it was over a prescription for Baclofen). Neither side was contesting I should have it, but neither would prescribe. In the end, I said: “Look, this is ridiculous! I am the patient. I have been told I need this drug. Nobody has put forward any reason why I should not have it, and I know full well GPs are allowed to prescribe, so would somebody please just get on and do it!”

After this little outburst, it was prescribed, and, touch-wood, there have been no more arguments - at least, not between the hospital and the surgery, that I know of. Still a few c*ck-ups between surgery and pharmacy. I don’t think these issues are universal - I think I was unlucky. You should be able to see the GP and get things prescribed - it doesn’t have to be the neuro every time.

Tina

I have been told its progressive, not sure what difference is with pp and sp? I had an idea it would be ms so no shock when he told me last wednesday. just want to know whats best to combat the fatigue. Just feel like a lazy geet sat doing little, as only 10 mins activity can wear me out

Hi, I have been having problems for about 5 years. I would have noticed it much later but as I am a dog walker I noticed that I was getting a kind of dropped right foot after walking for an hour Not so much fatigue. The foot feeling then started to appear after shorter walks and now its is there all the time. I am told that it is spasticity in calf muscle and I take baclofen which really only takes the edge of the problem. Progressive MS has been and still is a possibiliy but as I dont have brains lesions (only one is spine) and a clear MRI and I am still in limbo. Other things have been suggested like radiation damage.

Can I ask you which part of your LP was not normal ? Was is having positive Olonocogical Bands? It is just that mine were negatie and neuro says not MS then. Others though on this site have MS and negative bands. Also are both your legs the same?

Take Care

Moyna

Moyna i haven’t been diagnosed either because my LP was normal but i have 3 lesions on my brain scan and my evoke potential tests were normal too.

Have you made contact with your MS Society Local branch? You may also have an MS Therapy Centre near you. There are sixty or more around the UK. I attend one in Sussex. They usually have a large range of useful therapies available.

Regards

Robert