It might be worth you starting afresh under a heading of your own. As this is in another thread, it may be that your reply gets missed.
As a helpful tip, you will probably get more people reading your post if you break it up into paragraphs with gaps between ... not because we're grammar nuts, but because it helps us to read it. Large blocks of texts make it difficult for many of us to read.
I'm sorry you are having such a tough time and I hope you get some helpful replies . Just cut and paste your original text, under a new post, with gaps between paragraphs. If it offers the chance to turn it into a survey ... just skip it!
Judy, that's not helpful for you to have more things to contend with . I'm upset to hear that. I'm also sorry to hear you have to wait until June to be seen again. Is that to see the Neurologist or one of the others?
Returning to the 'now'. Do you have a tendency towards migraines at all? That could be a possibility ... mine often start like that and they can play havoc with my vision too (not always, but sometimes they do!).
If you're not prone to migraines, it might be worth putting a call in to your GP, just to run what you're experiencing past him or her. Whilst it's probably unlikely, and I really am NOT suggesting it is, many people with MS (as I expect you're aware) do get bouts of optic neuritis. Many people experience pain, apparently most don't. It may set your mind at rest (or stir you into action) if you take a look at this link on WebMD: http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-vision-problems .
I hope you are beginning to feel better now, Judy. Please let us know how you're doing.
Just adding a tiny bit in ... It may actually help, in a number of ways, to go ahead with your appointment with the immunologist/rheumy. It doesn't have to be at the cost of continuing to follow a neurological route. You can follow both.
So, how can it help?
A diagnosis of MS (unless positively staring the neuro in the face, banners waving) is one of exclusion - trying to ensure that there is no other reasonable possible explanation for your symptoms. Since the neuro would like to explore this avenue, he clearly believes you have problems and wishes to help.
If, the neuro has pointed you in a good direction and the Immunologist and/ or rheumatologist can help, then treatment options may lie with them; well and good (if any illness could be classed in that way!).
Sadly, as Kim and many others already know, MS isn't picky. It will happily bed down with any other of the available illnesses/diseases that are available to the population.
If by any chance, some of your symptoms are due to an immunological or rheumy problem, then the appropriate specialist can offer you their advice and suitable medications or therapies. Part of your problems solved (which has to be good).
If the specialist does not feel his/her diagnosis alone covers all your symptoms/history, then they MAY have further ideas as to who else to refer you to. This could be back to your GP, your neuro or another specialist. They may consider someone the others haven't.
If the rheumy feels there is nothing related to his area of expertise going on, he will 'bounce' you back to your GP or Neuro (whoever referred you). This will help your neuro to cross off one of the possible explanations for your symptoms.
It's all horribly vague and frustrating, Judy! Sorry that you are going through so much.
As Kim says, after a flare, not all of the symptoms necessarily do go - it depends on the level of permanent damage that has occurred or/and on how long it takes your body to make repairs (full or partial). Also, some types of MS do not have flares, as such, but progress gradually.
So much to take on board and so little help whilst you 'hang in there' waiting for the answers to start emerging. It's great that you check in here so often. Since returning to work, I'm much more erratic! I find work totally draining and I'm rather remiss at keeping up to date here. Apologies.
Sorry for the delay in replying, I've been away over Easter.
I love your sense of humour
I feel the same about the Gabapentin - I don't quite know what on Earth I'd do without it ... I'm already fretting slightly, as my body seems to have adjusted to the highest dose and it's not quite as effective as if was (but it is still pretty amazing for me).
I'm glad that you've found remedies that work for you and thanks for your post.
You don't mention if you are on any medication for the awful pain that you are in. You've only mentioned the DMD and the Prednisone for flares, as necessary. Are you not taking a regular medication on a daily basis to combat the pain?
Have you tried any of the various medications that are available for the neuropathic pain that you appear to be describing?
There are ones that help with the spasticity, such as Baclofen (and others) AND there are a range of medications, many of which are used in the prevention of seizures, which help to calm down the messages of pain the damaged nerves are sending. Neurontin is one of these, for example, and Lyrica is another.
I have been diagnosed with Transverse Myelitis in my C-spine and the pains that you describe are so similar, including the notion of being tortured, it is so severe.
I am on Neurontin and, for me, it's worked wonders . All individuals vary in what works and what doesn't, but for me, the Neurontin removes the pain, relaxes the spasticity and calms my tremor.
If you are not on anything to treat your pain, or if the issue has never been addressed, it's a travesty! Your GP may be aware of some treatments for neuropathic pain - if s/he agrees it could be the cause. If s/he feels uncomfortable prescribing something, ask her/him to get more information from the Neurologist.
You can continue looking for another neuro, in the mean time, if that's what you choose ... which sounds like fair advice!
Good luck to you - you should not have to suffer like this. Best wishes,
I've been chatting with Jim (hubby) about more of the music he plays in the evenings and at weekends for us to relax to. His recommendations: Thomas Tallis - Spem in Alium (L. Hope in Any Other) William Byrd Palestrina Josquin Des Pres Again, these are very reasonable from Amazon CarolView Thread
Good recommendation!! Jim has these playing many evenings a week and they are soothing; you're so right. You'll feel totally at home across the pond .
Hi Judy and Grace too. Grace, thank you for all your sage advice and calming input - great to have you 'on board' here; welcome.
Judy - so sorry you're having such a rotten time still and that you're not having much luck as yet with your diagnosis. In the meantime, it's wonderful that you have such a lovely, positive attitude. Just make sure that, whilst continuing to wait for the elusive diagnosis, your symptoms are being treated. Enjoy all those lovely musical recommendations - I don't think there's one there I don't enjoy.
Best wishes to all of you - Kim, Judy, Grace and ALL on this site, CarolView Thread
Sorry you're having such problems ... especially for one so young and I'm sad that you're neuro doesn't seem to have responded helpfully when you've tried to talk to him/her.
My neuro is kind; but sometimes I feel he hasn't listened as well as I'd have liked ... however, I have decided that it could well be down to me! Because I struggle with my memory, especially when I'm under any form of pressure, I ramble when I get to him. I leap from issue to issue - in the vague belief that he's understanding me.
My new plan is to take a written version of my main concerns with a copy, which I'll request he puts with my notes. He then has something concrete to go on and something to jog his memory before we meet again. In the case of your neuro, it may force him/her to take it more seriously, as it will then be part of the documentation about you.
I hope this helps ... as well as knowing that you really are NOT alone in this issue ... strategies are key to coping - as the others have mentioned.
Best wishes and do let us know how you get on.View Thread
Glad we can laugh about these issues ... I'm exactly the same; I spend a fortune using my mental shopping list (often despite having made a list - either left at home or , I've taken it with me, but haven't even thought to lok at it!!). I have been gently banned from shopping, we simply can't afford my shopping style.
I'm also a bit of a book freak (especially anything to do with sewing ) and I'm an Amazon-aholic. That's virtually had to stop ... a few minutes after I've ordered a book, I've forgotten I've done it and ordered another. I repeatedly try to order the same book again - fortunately, Amazon kindly tell me I've ordered it already!
I do carry a notebook and ocassionally I jot things down ... but sadly, I hardly ever remember to look at it. (Monyetta - please DO try it though! It DOES work for many many people.)
I usually have at least 6 or 7 tasks on the go. None of it's deliberate. I mean to finish what I've started, but the moment I've left the room to take something somewhere ... or collect an item, the task I'm on erases and I see another pressing issue and start on that! I've just learnt to accept that I'm a multi-tasker ... LOL.View Thread