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Neurology  (Expert Forum)
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MS various
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MS various

by aliaat, Jun 26, 2005 12:00AM
Dear Dr.,



23/F Dx'd with MS last year. Presented with 2 spinal and multiple brain lesions. I had a few questions relating to my MS:



1) Over the last several months, I'm getting episodes where the GI system shuts down for a while. Not simply constipation; if I eat or drink, it seems to stay in the stomach; doesn't seem to digest. I'll feel like throwing up for about 2-3 days (worst was over a week). When this happens, even the throat acts up; things just glide down, without that normal 'swallowing' feeling. Almost like inhaling actually. NEVER had any problems with these before. When the muscles/etc do 'wake up', the pain is quite bad.  



Once I passed out from GI pain (and got a nice gash on forehead on the way down). Other than that, it's just plain annoying/painful. I'm quite active, and make sure to get enough fibre. I never had problems like this before. Are these within the normal limits of MS? Didn't notice the throat Sx until recently.



2) I haven't had visual problems per say, although neuros said I'd had 'subclinical' ON in both eyes (palour on examin.). Yesterday, I had a very bad headache in the lower back of the head, and some blurring of the left eye (still noticable today). The pain is still there. No Hx of HA/migraine.



3) my neck gets episodes where it is just very weak. It's a struggle to keep upright. Can this cause the above Sx?



Not on any meds, but going to try Modafinil for fatigue. Neuro said this is what's causing the worsening right leg Sx. I'm in the UK, so can't get any specialist appointments before the next few months. Many thanks!

by CCF-Neuro-M.D.-PW, Jun 30, 2005 12:00AM
Gastroparesis or abnormal function of the GI tract related to the nerve supply to the GI tract has been reported in MS. This may be due to MS lesions somewhere along the nerve tracts that run from the brain, down the brainstem and spinal cord to the GI tract. Whether they are a manifestation of an ongoing demyelinating episode (in which case immunosuppressive therapy may be useful) or are the sequelae of a prior attack, may be difficult to work out. Some medications can improve gastric emptying in this setting such as metoclopramide and erythromycin. GI pain can cause syncope as the vagal nerves that supply the GI tract also cause the heart to slow, prompting a faint. Other causes should be need to be investigated such as diabetes.



ON is relatively common in MS, and the headahe and eye pain may indeed be an episode of ON. IV steroids are indicated for an acute attack of ON, adn will reduce the chance of further attacks over time. The eye will recover for the most part over a few weeks. If you are not on immunosuppresive therapy (for instance copaxone or interferon therapy) perhaps you should be, this should reduce the frequency of attacks, and there is some evidence for delayed disease progression over time



Its not immediately clear what the neck weakness is, but it should be evaluated further - neck weakness can be a sign of neuromuscular problems such as Myesthenia Gravis, which can also cause difficulty swallowing. This conditions is evaluated for clinically, and also with blood antibody tests and/or an EMG electrical nerve study.



Good luck



Good luck
Member Comments (12)

by aliaat, Jun 26, 2005 12:00AM
To: Dr.-Neuro
oops, RIGHT eye, sorry!

by Christie2004, Jun 27, 2005 12:00AM
To: blah
Glad to see you got on.



I'm on Modafinil, too.  Not for MS, but for shiftwork related fatigue.  It helps me greatly without any noticable side effects.

Sometimes it takes several days for the doc to answer.  Check back!

by aliaat, Jun 27, 2005 12:00AM
To: christie2004
Hi christie2004!



Yeah, finally got through!



Good to hear about the Modafinil. Will probably get it tomorrow, so here's hoping!



Thanks, and will let you know how it works (how long did it take you to notice its benefits?)!



Best,

A.

by Christie2004, Jun 27, 2005 12:00AM
To: blah
For me, it worked immediately.  However, I had a friend with MS (that's where I heard of it, from her) who was on it, and she had less sucess with it than I did.  



It is very, very expensive--don't know if your health insurance covers it completely or not.

by aliaat, Jun 27, 2005 12:00AM
To: christie2004
Well, the national health service puts most prescriptions at a set price, so I hope it's covered.



If it's very expensive, that may be a problem for when I'm doing my fieldwork abroad, since they cannot prescribe any medications for more than a couple of months at a time here. If it works, I'd have to look into other way of getting it in the year I'm out :(



Thanks for the heads-up, I will start looking from now!



A.

by chronicbammer, Jun 29, 2005 12:00AM
Hiya - I'm not a neuro, but very experienced with complicated migraine ie migraine with some variation on the standard sort of symptoms. Many of the things youve described sound like migraine - it shuts down the food digestion. also i get spasms inmy stomach with migraine. a lot of children get stomach migraine. you can get migraine with various different variations per episode, which can be confusing for new players/. my understanding is that you can get migraine as a side effect from ms. There are preventaives for migraine which can stop or reduce episodes. If the neck is triggering it - try regular osteopaths? chiroporactors? Or strengthen neck muscles - visit a good trainer? However wait to see what the neuro expert says! I hope some of this is helpful tho.

Can someone tell me how on earth you can get a question on this site? Ive been waiting forever. Im in the Southern Hemisphere. Any tips?!!!



by aliaat, Jun 30, 2005 12:00AM
To: chronicbammer christie2004
Hi chronicbammer, and thanks!



I thought about migraine, but I didn't think they could just pop up like that w/out a previous Hx or 'aura'? Since my neck's been so stiff the last couple of weeks, and sometimes just plain weak, I thought it was the muscle tension/effort causing these. Also, the couple of times I was able to post in the last year were around 13:30 GMT/BST give or take a couple of hours. Good luck, it can take months if you're not lucky!



christie2004, I started the Modafinil yesterday, had some shortness of breath for a couple of hours along with some increased muscle stiffness. However, now ALL my muscles are stiff. Ouch!



I can't believe this stuff, I took it at noon yesterday and still awake 24hrs later! Since the pharmacy had to order it in, and they weren't sure it would be in yesterday, I said may as well finish the last can of Red Bull lying around, since I won't be adding caffeine to Modafinil. Well, they got it in, and I took one forgetting about the RB. Note to self: give back that chem degree :-/



Anyways, will give it a week or so to adjust!



Best,

A.

by Christie2004, Jun 30, 2005 12:00AM
To: blah
How much are you taking?  I started off with 1/2 of a 100mg tab, just to make sure it wasn't going to do something crazy to me.  

You might have to titrate yourself.  Get a pill splitter.



I don't have any problems sleeping at all now, and I'm on 200mg.  I never had any symptoms at all, but then again--I don't have MS.  I would cut them and see how it goes.  Take them in the morning.



You can email me at ***@**** if you would like to discuss stuff w/o being on the board here.

by lchelsemom, Jul 01, 2005 12:00AM
Have those with fatigue ever tried Progival for daytime drowsiness?  I have been taking without much effect -

by aliaat, Jul 02, 2005 12:00AM
To: LindaS
Yeah,



Provigil is brand name for Modafinil.



It's doing well for the fatigue in the 3 days I've been taking it, but this shortness of breath is annoying. Will give it a few more days and see.



I guess I got lucky, felt like the roadrunner after a few hours of taking the first one!



Best,

A.

by dragonsign64, Jul 14, 2005 12:00AM
Hi everyone.



I have had MS since 1990 and have tried Provigil for