Frequent Symptoms

[zoefromsussex]

I keep reading that most RRMS sufferer's are largely symptom-free unless they have a relapse but is this really true? I'm only in the early stages of MS but have had pretty much constant symptoms since Oct 2011 and I'm starting to wonder if it's normal?! Most days I tingling or numbness in both hands or some weird sensations whilst walking.

My vision has never recovered completely either, which is annoying. Just lately I've been getting a lot of discomfort in my right hand (achey) The neuro says people report all sorts of symptoms once they know they have MS. But I'm definitely NOT imagining any of this!

Just wondered if I'm alone with the constant annoying little signs of MS?

[zoefromsussex]

Hi Jen!
Good to hear from you. Sorry to hear you're still having troubles too. I must admit, it's only pesky little sx which I'm talking about; no major flare or anything (touch wood anyway!) but I just find the whole ms journey a confusing one as I thought you only got new sx with a flare but I notice new stuff quite a lot.
The hand pain is new, the foot pain is new and the occasional shaking/tremor thing is new. Is that normal? It makes me panic that I have something different to MS and I don't want to take dmd for something I haven't even got!
How do you know if you have spasticity then? See, none of the doctors I've seen even discuss anything like that.
I'm glad your copaxone is working well. My first copaxone delivery is tomorrow and I will start the injections next month. Still no appointment for the new neuro so I'm neuro free at the moment.
I think the sitting you down like a child thing is what I kind of need as I don't seem to be fully understanding of why new issues pop up all the time!

[jenphilly]

Hi Zoe -

Long time!!   Sorry to hear you're still having symptoms, but same here...  while I have done a lot with diet and supplements and yoga that help, I just got to the point where I accepted the new norm...  

My primary doctor gave me a sit down like he was talking to one of his kids :)   As he put it, there is damage to my central nervous system, there are lesions and scars that will never go away, so there may always be symptoms associated with them.  My left arm and hand has always been in some stage or degree or numb, tingling, pulsing, sometimes almost like I was shocked and its a buzzing that remains....   Eating the wrong thing for me can cause a whole laundry list of symptoms to rear their ugly little heads...  and I've been finding out that even with staying inside with the AC on all the time, I am still having muscle spasiticity in my feet and calves.  Nothing nearly as bad as last summer where I could barely walk, but still enough to be hard to ignore.

My doctor did do an EMG on my arms, there was the outside hope that some fo my symptoms were related to carpal tunnel since I'm always on the computer....  that would have been good news and reversible!   But, my EMG was normal, so unfortunately it was the lesion that just happens to sit in the wrong (or right) place in my cervical spine...  yeah, lucky me :)  

I don't think I've had a 'symptom free' day since June of last year when I had my major flare / incident / episode (call it what you will).   Have not had anything new and my MRIs just came back showing no lesion change, progression or additions....  

I am looking to add reflexology to my alternative treatments....  yoga has helped tremendously with my balance...  hoping reflexology and massage therapies might help with some of the muscle issues.  Nothing will ever 'cure' the symptoms, but hoping to find a solid management regimen that least makes everything bearable.

I am really happy to hear you are starting copaxone!   I am still on copaxone with very minimal issues (couple injection locations just bug me more then others, but getting stung by a bee is way worse!!).    

Anyway, won't babble on...   hope you are feeling better...  but know with 2 little ones, many times its just a suck it up and deal with it to get things done!!!!

Good luck with finding a new neuro!!!   Hope you're next one is wonderful and you can forget about the first Dr Weenie.    

Jen

[zoefromsussex]

Thanks again Alex :-) This is why this forun is so invaluable; it's a huge help talking to other people with sx.
Jensequitur...this is what I'm finding. I've been off kilter ever since that first proper flare. Nothing major or anything but enough to give me a constant reminder that something is wrong. Today for example I have 'fizzy'  feet and can't walk on my heels on my right side and my vision is extra blurred. Surely proper MS comes in flares and than recedes??? This is what concerns me, that I could be taking a dmd for a condition I haven't really got. I find little sx occuring almost daily...

[HVAC]

They o not need to do a emg they can tell from a neurological exam. Mypain Doctor did a neurologic exam and knew where I had damage in my CNS and that I had clonus. For nerve pain they have a lot of things they can try. Take care.

Alex

[jensequitur]

I wonder if some of your hand pain is spasticity, and the other paresthesia...

I've never felt completely normal since I started having symptoms in 2006.  It took three years to recover from the flares in 2006 and 2007.  My main improvements have been in fatigue levels and heat tolerance.  Everything else is still wonky - but at this point, I'm glad just for the lessened fatigue.

[zoefromsussex]

Thanks so much for your response, Alex.
I'm due to get my first delivery of Copaxone this friday so should be starting next month and I'm also on a waiting list to see a new neuro/ms specialist as I was not getting on with my neuro at all. I think I need to start this dmd and maybe get some sort of nerve test to see if the hand pain really is due to the MS. The sensation varies so much from an ache to a throbbing pain. Today is more like tiny shocks. Very odd but then so are most MS symptoms!
I'm guessing nerve damage is what bothers me then as I've had a couple of definite flares and they're very different.
I think if I was able to rest occasionally that would also help but hey ho, such is busy family life!
You sound so positive and in control of things. I really admire that and I'm really grateful for all the answers you've just given me. I'm gonna re-read your post a little later so I can fully take it all in as I have a screaming baby to tend to right now! Lol.
All the best to you,
Zoe

[HVAC]

Every case of MS is individual. It all has to do with which nerves are affected. There are two processes inflammation and nerve damage. It is hard to know which is which. Inflammation can stick around for a long time, and sometimes it does not. If symptoms come and go that is inflammation. Over time the DMDs can bring down the inflammation. I sometimes have symptoms for the longest time then I realize one day the symptom is not there or has moved or is not as severe. The majority of MS starts as RRMS.

At first I noticed every new symptom. Now I hardly notice things. I know they are there and I know my body so I know what to look out for. Everyone with MS does not get every symptom. In 47 years I have never had optic neuritis. I have had permanent double vision for 47 years. I have PPMS and have had it my whole life. For the example of every case being different, I still live a pretty normal life.

I did have pain issues but went to a pain clinic. They had to do a lot of trial and error. There is no one size fits all treatment for this disease since all of us are so different.

basically you need to learn to trust yourself about your MS. My MS Specialist has no clue about my disease except for the things he can measure himself. Otherwise he is just guessing. They still know so little bout MS. A lot of what happens is in the gray matter. You can't see gray matter on a MRI. MRIs show the Doctors so little of what is going in our central nervous systems. The Doctors are only going by what is found in research and what their patients tell them.

Also everything is not MS. This is why it is important to have a good GP. I run everything by my GP first. Half of what ails me has nothing to do with MS at all. We still get arthritis and other things. For example i was having diaphragm spasms so everyone including my MS Specialist decided it was MS and it turned out in my case to be cancer. They took the cancer out and no more spasms.

You are your best health care advocate. Learn to trust yourself and what your body is telling you. Do what you are doing and ask questions. I had pain in my hand and it is clonus, involuntary muscle spasms, from MS. I take Xanaflex for it and am fine. I tried a number of drugs before I found what worked. Again the private pain clinic has been my life saver. My MS Specialist just threw the standards at you for pain like Neurotin for nerve pain, baclfen for spasms. Those just did not work for me. I even got a cream to rub on my hands which my GP has made at a compounding pharmacy out of state that helps when The pain is too much.. There is relief for symptoms it just depends on what is causing your symptom and finding what works.

There are days I almost forget I have MS, but it has taken a while. It is like when I stopped drinking all I thought about was being an alcoholic and not taking a drink, then it was like that with MS. Now I hope for a day when I do not think about my cancer. I think it is normal to center on health issues. The great moments are when you realize you are not thinking about any of it. They sneak up on you.

Alex