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Old 10-17-2009, 12:34 AM   #1
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Don't know where this is all headed

Hi,

I feel a bit silly even writing this and nervous that I'm even contemplating the possibity that ms is what i could have but i have really no one to talk to about it, i dont want to worry my family and if its not then it would just be a waste of time telling them so i dont really have anywhere else to turn i guess.

I went to the doctor the other day as i have been having problems with my hands again. Last november my hands started going completely numb, stiff and was having trouble opening jars, taps etc, really annoying stuff like dropping things all the time, cups or spilling the coffee and sugar when trying to make a coffee or something,, because of the work i was doing at the time the doctor thought maybe i had carpal tunnel though it had come on suddenly which she said was a bit unusual.. I had a nerve conduction because of the severity but nothing showed up.. Thinking it might still be carpal tunnel i left that job even though after about three months my hands started to improve and eventually i forgot about it for a while.... I found a job where the work was not so repetitive and was fine until about a month ago when i woke up one day and my hands were completely numb with a funny feeling going up my left arm, hard to describe and have had that feeling in my legs before, like a tension of some kind.. Anyway, this time my hands are worse and i have other things going on too, bit embarrassing but trouble in the bladder dept if you know what i mean which to a point i have to understand i have kids and not getting any younger but it has never been this bad before to the point where i have to take precautions..

I have also been stumbling a bit, my right foot doesnt always lift of the ground properly, i think im just being clumsy, my vision has been blurry of late, but then i have had that problem on and off for a few years, due to astigmatism but for some reason blurriness is worse sometimes than others,, i have always just thought sometimes i was tired.

I have had various weird symptoms over the last 8 - 10 years, ranging from my tongue going numb, heavy head and vertigo, that lasted about 4 months before disappearing as quickly as it came on, a lump at the back of my throat that i could feel everytime i swallowed some days was worse than others, but remained fairly constant for about 8 mths then disappeared... Weird sensations in my legs like things crawling beneath my skin, severe itchiness of my scalp and my legs, to the point where i have thought i would go crazy, heavy feeling in my legs, red irritation in my right eye, which the doctors thought was an allergy but could never figure out to what, and would disappear for months only to come back with a vengence, i have tried every eye drop on the market to no avail...

I have been tested for rhuematoid arthritis, lupus, lymes, Vit B deficiency, diabetes etc. All my blood tests come back clear every time, i have an episode of some weird ailment.

I went to doctor the other day because of current symptoms, had more blood tests, all clear again, a cat scan all clear no tumours, only opacity in my ethmoid cells, which i dont even know what that means, now i have to go and see a neurologist as she said my tongue going numb and my hands going numb is not normal... she does not think i have carpal tunnel due the rapid nature by which it came on and disappeared and then returned again..... and my bladder is a concern..... I don't know what to think really, i feel like a hypochondriac of sorts and have suffered from depression and anxiety over the years and have wondered if this was the cause of my symptoms, all in my head that sort of thing, but now i don't know....its a three month wait to see the neurologist, what im i meant to do in the mean time, my hands are still numb. How can nothing show up in any tests or a scan, I dont understand it, Im feeling a bit frustrated to tell the truth, thanks to anyone for any advice, and for reading my post.

 
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Old 10-17-2009, 05:52 AM   #2
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Re: Don't know where this is all headed

Hi there. Sorry you are going thru all this and are so frightened. You are not alone, plenty of people are going thru the diagnosis stage along with you, and more then a few of us have already survived it.

The symtoms you describe are neurological in nature and it does sound like your GP has run every test that she/he should have to get you where you are right now. However, the CT test amazes me. A CT would show a pinched nerve or back problem, but NOT a lesion! Your next test is going to be a MRI for sure..so start preparing for that. A MRI is much like a CT scan, but takes longer and is alittle more claustrophobic, but it will 100% for sure pick up lesions. If this Neuro talks to you about it, request both with and without contrast and both brain and spine.....thats where 99% of the lesions will show up. The contrast will pick up things that might otherwise be missed,without it.

It does sound like MS is a possiblity, but even if it is....dont fret. Most of us are still working, taking care of famiilies and kids- traveling, and doing everything that we have always done. We just take better care of ourselves and take MS meds...but we can talk about that if it becomes a possiblity. Right now, a quick question. Any heat issues? When you take a hot shower, or blow dry your hair? Weakness? confusion? Irritiation? Just wondering. Those are also some common complaints of MSers...
Hang in there and keep us posted. Welcome. You have found a place of support!!
Nikki
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Old 10-17-2009, 07:20 AM   #3
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Re: Don't know where this is all headed

Warmest welcomes to you!

MS can present with mild symptoms which are often ignored or dismissed. If you have had the symptoms as you described for 8-10 years, it is quite possible that you have MS. I ignored my foot-drop for 5 years until my GP initially thought I had carpal tunnel. Tests showed a ganglion cyst and something neurological. Luckily I got sent to the University of Kansas MS Clinic.


Once you know the source for your maladies/symptoms, I think it is easier to deal with them. The "not knowing" can cause severe stress and only worsen your situation. Know that you are among friends who have experienced the same path you now trod.

You are in my prayers!
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Old 10-17-2009, 03:15 PM   #4
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Re: Don't know where this is all headed

Hi

Thanks for the replies,

In regard to the cat scan thats what i dont get, if ms is nerve related surely the nerve conduction would have showed something as i thought thats what it did but that came back clear. I had that done 12 months ago and after that my hands cleared up the numbess that is though i think i have had almost like a left over weakness in my hands especially my fingers which i have noticed when i write.. though most of the symptoms disappeared. The numbess only came back a few weeks ago which kind of surprised and my first thought was NO... here we go again because it was so frustrating the last time.. The doctor said that it could not be carpal tunnel but did point to something neurological so i dont quite get the difference because neurological has to do with nerves.. if that makes sense.

The other thing that bothered me was that the doctor said all the 'weird symptoms' i have had are all neurogical based and by themselves would seem unrelated as they have happened independantly of one another over a period of a few years and thats why she suspects ms but then why do i have several symptoms( hands, foot, bladder ) all the one time now if thats the case...

As far as heat goes, well i havnt had a bath in well i cant remember the last one because i cant stay in there for too long because i overheat, i hate saunas and spas and sometimes (not everytime) i feel quite tired almost exhausted to the point where sometimes have actually gone and laid down on my bed for a while... after getting out of the shower but have just thought that was because i had it too hot. Have never coped well with the heat summer time kills me with fatigue but live in Australia and originally from Scotland so just thought i was heat sensitive and have avoided going out in it because i just dont cope with it.

I guess i will just have to wait and see, i am going back to the doctors next week, i dont know if she is going to run more tests or wait for the neurologist to do that.

Thanks for listening.

 
Old 10-17-2009, 06:41 PM   #5
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Re: Don't know where this is all headed

Hi again, Everything you are saying actually makes perfect sense. The nerve conduction study would only show "something' if it was related to the part of the body it was conducted on....ie. if you had carpal tunnel, the nerve conduction study on your hand would have shown that it was carpal tunnel.

I know this, and I too- started out with numb, tingley hands, and thats exactly the first test I had, with the same results...the next thing they did for me was a CT scan, thinking pinched nerve. That wasnt it either..

So, the reason a MRI is next- IF you show lesions on your brain or spine...those lesions affect different parts of your body. Could be your hands. Could be bathroom issues- could be numbness in your toes. The lesions arent going to show up in your hands or feet, but in your brain which controls that part of your body. Why would the symptoms show up randomly? With MS, when the active lesion is happening (do you know what a lesion is? its a scar, caused by an attack on the nerve coating- the Myelin Sheath its called- when the nerve is attacked by the body (autoimmune disease) the damage it leaves behind is a scar, or a lesion) ANYWAY, when its actively happening, youre going to have symtoms.....go back a year to when this started. THen, when the damage is done, depending on how badly the damage is, it might regenerate 100% (end of symptoms) or it might only regnerate partially....ongoing symtoms...which can come and go. MS is not an "all the time" thing- you have good weeks, bad weeks, good days and bad days.

So the fact that most of us have had MS for more then 5 years by the time its diagnosed, is NOT surprising...weve had warning signs, and we have had symtoms which we blew off as unexplainable...because they come and go, we dont put much stock into them. Its not until several symtoms hit us at once that we go to the doctors and start investigating. The MRI will be telling...it might show old scars from previous attacks..or it might show brightly lit up scars- new ones- new attacks....but it will probably show things which are in accordance with where your symtoms are.

MS drugs do not cure MS. But, they are supposed to stop the attacks and prevent new symtoms...the more attacks you have, the more likely it is that eventually your symptom will be permanent, so you want to stop that from happening. Im on Rebif- a 3 x a week shot. I havent had a new attack or new symtom in 4 years...but I do have permanent nerve damage in my hands and fingers, simply because I didnt start the medicine quickly enough....

The heat thing IS SO VERY MUCH LIKE MOST OF US DESCRIBE. Hate to say it, but the way you described it- is simply heat sensitivity. THats the most common MS symtom that almost all of us ignore. I havent been in a sauna, hot tub or bath tub in over 4 years. When it is hot and humid, I stay in the a/c as much as possible, or I break into tears from frustration! I cant think straight, I cant work well...I think about moving to Alaska often!

So I hope this helps you to understand why being a neurological disease doesnt mean that they will find something on a test...and why if its nerve related it might not show up in any specific tests. MS is one of the hardest diseases to diagnose because you have to rule out EVERYTHING else first...there is something called the McDonald Criteria which you can research here on healthboards by searching it, which tells you about what doctors have to do before they can dx MS...it will help you..but honestly, get yourself to a good Neurologist and start asking about MRIs and what they might tell that the other tests havent shown...I think you are on the path to a diagnosis.

We are here if you need us..
nikki
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Old 10-18-2009, 03:03 AM   #6
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Re: Don't know where this is all headed

Hi

Thanks for the information, I understand a bit better why nothing comes up as this has always bothered me, hence the thinking that it was all in my head for the past few years. The heat thing well had a funny feeling you were going to say that after having done a bit of reading this afternoon, funny i never really gave it any thought as a symptom of anything, just always thought i had too much scottish blood in me, but poor kids never got to spend long at beach either come to think of it, as i couldnt cope with being in the sun for too long, 15mins im trying to convince them to go home so i don't overheat.. That sort of thing i can live with, its all the other annoying, exasperating symtoms that leave me frustrated and slightly depressed at times, most of which i have just written off as one of those things.. You said you were first diagnosed with carpal tunnel, did you have it in both your hands and do you get muscle stiffness with this.. I know my hands are definitely not as 'nimble' as they once were, so even when not numb they still don't work properly. But I do have good days and bad days not just with my hands but with a lot of other things too....

Thankyou for your support and advice, it is greatly appreciate.

GG

 
Old 10-18-2009, 08:59 AM   #7
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Re: Don't know where this is all headed

Hi again. I didnt say I was first diagnosed with Carpal- I said the first thing that the doctors said it was - was Carpal. I woke up one day with intense numbness and tingling in my left hand. I couldnt feel it. I was banging it against the headboard of my bed...then, my steering wheel all the way to work, eventually my desk. I was an online scholar at the time and doing a ton of typing all day long, as well as typing for my job. It made sense to think it was Carpal Tunnel...but it wasnt. The EMG showed nothing. The CT showed nothing...it wasnt until I had the MRI about a month later, that the lesions showed up; all pointing towards that part of my body...

4 years later, I have no use of my hand or fingers. I type mostly with voice recgongition softwear and when I do try to use the hand, I make more mistakes then its worth. I cant feel it to feel the keys. I burn myself often in the kitchen, even though I have really expensive pot holders that go up to my elbows! I never think to wear them! However, Im also a Director at a large company, travel for my job, have 3 kids and a needy husband and live my life as if none of this bothers me. The only difference between me and you is that I do Rebif shots 3 times a week....and mostly I do it because I have proven to myself that without it, I have relapses, feel overall crappy and MS becomes an issue. SO I do the shots and dont have relapses, but my original problems, I waited too long to deal with and they became permeanent.

I hope that helps? Please let us know what happens when you see the Neuro...
Nikki
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Old 10-19-2009, 02:18 AM   #8
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Smile Re: Don't know where this is all headed

Hi,
I've been very interested reading this post, as your symptoms are almost identical to mine. I started with numbness and tingling in my left hand around 6 or 7 years ago and carpel tunnel was one of the first things suggested by the doctors. However my symptoms soon increased to include my arm and leg and carpel tunnel was ruled out. For the last few years, my hand has been much less of a problem than my leg. However, it is much worse again now with pain and cramp. Often when I am relaxed, I notice that it has curled up and the muscles in the palm are all tense. Like you I don't cope well with heat, the children laugh at me on holiday when they are soaking up the sun whilst I sit under a tree! I live in the Lake District though so it is pretty cool here most of the time.

The thing that bothers me most about reading this thread is what Nikki said about getting early treatment to help slow progression. I have had a clear MRI 18 months ago and the doctor now dosn't want to see me again unless my symptoms become much worse. he is reluctant to do another MRI because he says repeated MRIs won't be good for me. But then he said he could prescribe something for my tremor. I didn't get anything for the tremor as I wasn't sure about the side effects. I feel I'm getting mixed messages from him. Reading between the lines I think he thinks it's MS but wants to wait until I'm worse to do another MRI.

Sorry to go on, I've not helped answer your questions. 3 months seems like a long time to wait for a consultation but hopefully it will go quickly. If they don't mention an MRI to you, I would ask them about it.

All the best,
Maggie

 
Old 10-19-2009, 12:06 PM   #9
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Re: Don't know where this is all headed

Hi Maggie. Sorry to hear about what you are going thru. I think its safe to say that all doctors are on the fence about whether to start treatment early, or wait until the patient has a signficant relapse. Because MS is so difficult to diagnos, and because you have to absolutely rule out everything else first- to say starting treatment early prevents progression is kind of a iffy thing...

If its definately MS, then I agree that starting on a MS med is the way to go, but thats just my opinion, based on my own experinece....however, without a definate dx of MS, I would never suggest to someone to request MS drugs. They are all shots, or infusions, and they have their own risks and side effects.

what I would suggest to you, is that if you can get an appointment with a MS specalist, a Neuro who specializes in MS, then you should try. If you have to see another Neuro to get a second opinion (one without the specialty) then its still better then waiting to see what is going to happen. By waiting to see what MIGHT happen, and risking the fact that there might be something on the MRI, you risk more nerve damage. A MRI is usually repeated every 6 months. Things can change on a MRI from week to week....waiting 18 months as you have, is a fairly long time! Also was both the brain and spine done? All of the spine, or just the neck area? Was contrast used? Contrast will show things that without it, might be missed. Some MS patients have lesions in the lower spine area, the T (or Thoracic) spine, while most show things in the C spine area.... as you can see, its all very confusing and ongoing...nothing with MS is easy.

On the other hand, waiting 3 months to see a specialist isnt a horrible thing. With MS, nothing progresses "that quickly". Many patients, myself included, had symtoms for five years or longer, wihtout ever knowing that it might be MS. So, 3 months, in the grand scheme of things, isnt the end of the world....however, waiting 18 months for a MRI sounds extreme to me.

i wish you well....thanks for telling us your story..and seek aggressive answers to your questions with doctors! You have the right to be aggressive in wanting to know what is going on, but at the same time, dont fret that if you dont get an answer NOW that its going to hurt you. A few months here and there isnt the end of the world. Of course the other side of that argument is, if you find that you are having new symtoms or new problems, please push that doctor into a MRI sooner rather then later....even Solumedrol, the IV Steroid, will help to speed up recovery of a relapse, which, if ignored, might cause more damage..

good luck and stay healthy!
Nikki
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Last edited by MSNik; 10-19-2009 at 12:07 PM.

 
Old 10-20-2009, 02:31 AM   #10
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Re: Don't know where this is all headed

Hi Nikki,
Thanks very much for your kind reply. Like you suggest, I would like to ask to see an MS specialist and have a full MRI of my spine. However here in the UK, our health system is very frustrating and you have to wait a lot. The MRI I had was of my head only without contrast. The two neuros at our local hospital are the only ones in this area and if I paid to go private, they would be the ones I would see anyway! I think that I will go back to my GP pretty soon and tell her about all my new symptoms, then hopefully she can push for me to get an MRI sooner. I believe that there is an NHS MS specialist in London, but I'm worried that I will look like a hypochondriac if I start asking to go 300 miles away for treatment. I will certainly ask about having an MRI of the spine next time I see the neuro.

Thanks for your support Nikki,
I find this board most helpful!
Maggie

 
Old 10-20-2009, 04:55 AM   #11
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Re: Don't know where this is all headed

You are welcome! And, I do understand how difficult the health system is in your country; however in the end, you must follow your instincts and do what you feel is right for your body. I wish you well...
Nikki
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Old 10-23-2009, 12:42 PM   #12
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Re: Don't know where this is all headed

Hi there,

Well here I am again, investigating some more information and reading with interest how many others have similar symptoms to me, almost gives me hope that maybe they will find out whats wrong, have always just thought I would have to put up with the on again off again symptoms i seem to get, thankyou Nikki for clarifying some things for me which i was finding confusing, it seems the doctors are reluctant to give you anything in concrete, I am assuming it is because the really don't know what it wrong and can only hypothesise until more tests are done. Hi Maggie, I didn't actually think 3 months was too long to wait, though frustrating, its only if you have top medical insurance that you can bypass the waiting lists, unfortunately I am not in that category, the main reason being is that various symptoms over the years have made it difficult for me to hold a job down for very long...Symptoms come, I cant keep working, symptoms go, I find another job... I have been doing this for quite a while now and finances have not always been stable enough for me to afford private medical insurance.
I went back to the doctors yesterday and she put me down as medically unfit to work again until i can have more tests done. The job i have been doing is not exactly safe with my the hands the way they are and I am also extremely fatigued and probably depressed. So off work again.... She did mention to me something about a blood test that was done that did come back positive though she said it didnt really mean anything. I had a positive ANA and it reads Speckled and Homogenous 1/320. She said all this means is that I may be predisposed to certain autoimmune disorders but when they ran the other more specific tests, nothing came up so it doesnt mean anything. I remember when my tongue was going numb, they did the same blood test and the same result came up but further blood tests back then came back clear aswell. That doctor however said maybe lupus....but i was never referred to a neurologist then either. So back to waiting for MRI which the neurologist has to order apparantly and managing symptoms as best as i can in the meantime. Thanks to you guys for listening and replying to my posts.

Lorraine

 
Old 10-23-2009, 12:48 PM   #13
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Re: Don't know where this is all headed

Hi Lorraine. Good luck to you! And, youre welcome! Sounds like you are at least on the right track this time around...Ill say a prayer for ya, for strength if nothing else! This is a trying time for anyone.....

The test which shows you are predisposed to autoimmune diseases- dont put too much stock in that one! Almost all of us, are.....it would be rare not to show what your tests showed...so dont sweat that.

Shame about you not being able to go back to work, but sounds like you are handling it well...

Keep us posted on whats happening...and really- be good to yourself. Youre going thru alot. No reason to be depressed (even if I can understand why you would be) this is all going to work out in the end! One way or another- youll get your answers!

Hang in there.
Nikki
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