I just wanted to say something

[Tumsie]

I've been reading a lot of what y'all have gone through and I'm crying because I see me in a lot of what you've experienced. The fear, the anger, the sadness have all been so real for me. The overwhelming feeling if despair that I have right now thinking that nobody can help me is so painful.. I haven't gotten a DX, I'm not able to see an MS neurologist  but my GP says its most likely MS and that's what we're going with. Will I ever be normal again? Will I ever have a left hands that feel like a normal hand? No tingling.. will I be able to have a night out with the girls again?... Why me? I'm only 31, my kids are so young... This is all too much... Too much

[Guitar_grrrl]

No, don't give up!  If you are diagnosed with MS, it's not the end of the world.  I'm 55, have had MS for >25 years, and I still ride my bike, paddle a kayak, play with my grandson, garden, etc.  I have symptoms every single day, but I do my best to manage them, and go about this business of life.

Enjoy your kids.  Keep your appointment in June. Try to keep your anxiety to a manageable level.....  breathe.

[HVAC]

Being brave is being scared and doing things anyway. This thing is really a step by step thing. None of us can handle the whole big picture. We handle things step by step. Piece by piece not the whole picture. How do you eat an elephant one bite at a time. People are resilient. The unknown is what gets us not what we know and have to face. Limbo is scary. It is too much but you can get through it. Sometimes you need help. I had to get a counselor that dealt with chronic disease when I was going through my MS diagnosis. The what ifs and unknown are the things that trip you up.

My health problem are cosmic joke. Just today I they found something new I have to have tests for. Something scary but I am not to project to being the worst case scenario. I will take it one step at a time. Be kind to yourself. What would you tell a friend?

I have been told I a might have terrible diseases several times by doctors and they turned out to be wrong they were lesser case scenarios. Doctors do  a lot of guessing.

Even if it MS its not the end of the world. I have had MS for 48 years since I was two. I am happier at 50 than I have been my whole life. I have learned there is more to me than my physical self.

It will get easier. Do not give up.

Alex

My

[kwarendorf]

Hi Tumsie -

It sounds like your plate is extra full. Not only are you trying to figure out what's wrong with you, you're trying to do it with less than ideal medical support.

Some of the symptoms you describe are on the list of common MS symptoms. Constipation, urinary issues (incontinence/hesitancy), numbness/tingling are all symptoms commonly reported by people with MS.

Your questions about MS and quality of life have been well answered here. Here's my version. If diagnosed with MS your life will never be normal as you knew it. MS rarely lets us completely forget that it's our life companion.
This does not mean that with the diagnosis you get a wheel chair and a drool cup.

Many of is with MS lead outwardly normal lives. I get up every morning and go to work. I live on my own and tend to myself, 2 cats and 2 birds. I ride my bike. I travel. If you saw me on the street you's never guess I had MS.

I do have daily reminders of my MS. I have urinary hesitance. I get very constipated. I have erectile disfunction. I have neuropathic pain in my feet. I wake up every morning and have double vision for 3-5 minutes. For the most part these daily reminders are managed with medication.

So my life has not returned to pre MS normal. But my life is good and full of lots of great stuff :-) No one can say if your tingling will go away or if the hug will subside. You, like us will find a way to accommodate MS in a way that has the smallest impact possible on your life :-)

Ask us lots of questions!

Kyle

[essdipity]

Your written English, at least, is perfect and very idiomatic, so I took you for a native speaker in a Western country. If you'd rather not say where you are that's perfectly okay, but it does make it hard for any of us to make practical suggestions. I gather from your reference to your ethnicity and location that you're in a rather southern place. That does not mean you can't have MS, of course, as it happens virtually everywhere to some extent.

I have to say that although you have many symptoms consistent with MS, not everything you mention is. In this category are impaired kidney function, low blood pressure and swelling of the extremities. I'm no doctor so I can't say if they'd be tangentially related, but just from my own thinking I'd guess if so they'd be very late in the MS process, which you are not. To me they sound like circulatory problems. What have you been told about your cardiac function?

Also, just so you know, if you have the MS hug it sounds very different from what others here describe. Once again, just my feeling, but maybe it's more of the general sensory issues you've been having.

Okay, so on to the practical realities. Keep that appointment in June. Yes, that's awful, but at least it's a neurologist of some sort. Next, are there any local agencies that could help with funding for you to travel elsewhere again? This time to somewhere with skilled neuros and a reliable office or hospital structure? Someplace where you can be sure appointments will be kept and communication maintained? You need to do a lot of research to find the right place, and not just hope for the best when you get there.

Since your English is so good, you might be able to contact foreign outposts of some sort in your country and explain your problem. Possibly there are even foreign medical facilities that could be of assistance, but not knowing the political circumstances of wherever you are, I can't really speculate on this further.

Another point--you don't need a lumbar puncture. Many MS medical specialists stopped ordering them some years back, as they are invasive and don't prove anything. If the results were normal you could still have MS, and that has been the case for many of us here. If they were abnormal in the MS way, that might make a hesitating doctor go for the diagnosis, that's all. So that's one thing you can cross off.

No matter what, you still need a local doctor to manage your disease, and it sounds as if your GP is willing. Not the best of situations, but doable. Assuming you have MS, you need treatment. Smallish doses of steroid will  not make much difference, and can be dangerous over the long haul. Weaning off under your doctor's supervision is something you should look into. Please use the internet and find out more about long-term steroid use.

I don't know whether your GP would give and oversee one of the MS disease modifying drugs, but you can certainly ask. And he can prescribe other medications to help with symptoms, such as the tingling. Nearly everyone who posts here has meds for various issues, aside from the front-line MS disease modifiers.

You also need to see a urologist. Most people with the problems you describe are helped by meds to control urine output. This gets complicated, of course, if you have kidney and other issues, so you need to have it evaluated by someone with in-depth knowledge, and that doesn't mean me. Even you GP could manage this if need be. Not ideal, but real.

I think I've covered most of what you've said, and others of course will respond. I do ask that in your future posts you break your writing into small paragraphs. Many here have eye problems and cannot follow big blocks of text.

Again, I can only encourage you to keep fighting for the right diagnosis and treatment.

ess

[Tumsie]

I don't have the relevant neurological expertise available in my country... there's like one neurologist at the main hospital and can you believe it they gave me an appointment for June 28... yes JUNE. My symptoms started in August last year with pins and needles, hot and cold sensations in my left foot and leg, this continued to spread upwards, by September/October the numbness had spread to my torso you know just the area from below my ribcage to the top of my pelvis... A weird numbness which was sensitive to touch and heat (now I know its what you call MS hug)it was very hard to describe, at this point I spoke to my GP who said I should see the neuro surgeon (my hospital doesn't have a neurologist), this neuro surgeon didn't give me the physical examination, asked me to use any other word besides tingling to describe what in feeling (how was i supposed to do that? Tingling is tingling)you know the one they do fit reflex, sensation et...said I should get an MRI for spondyliosis (sic), I decided to go find someone who would listen so I went to another clinic that boasts of having all sorts of specialists under one roof and so I go asking for a neurologist and they give me this doctor who isn't a neurologist... Then the circus starts, battery of blood tests..kidney function tests looked slightly impaired.. Lets do more tests, meanwhile my left hand has started tingling, my blood pressure keeps dropping, oh had I mentioned i had started having some urinary problems-urge incontinence and that feeling like you really need to pee but only a bit of pee comes out and you feel like you're not done; this new doctor wasn't keeping our appointments, was hard to get a hold of meanwhile i was sick at home with the low blood pressure and swelling ankles and feet, I was referred to another doctor who was just another waste of time... by this time, now November, l'hermittes sign had started and I'd had an incontinence episode in public (cringe). This is where I decided to go to a neighboring country with better medical facilities. Physical examination and cervical spine MRI reveals a lesion,I didn't have enough money and other requirements for other tests and the lumbar puncture. The neurologist says further tests are needed which I can get done back in my country, this was the first I heard MS being mentioned. Is put on prednisone for 5 weeksh,60 mgs for the first 2 weeks then tapers down over the next 3 weeks, still on it. He couldn't admit me cause of I couldn't afford it and I didn't go with a relative. During the treatment I've had muscle spasms in my legs, twitching, heat sensitivity, the MS hug hasn't left, constipation (my body just doesn't feel like taking a dump even if I can feel my rectum is full-weird), the incontinence has improved... sigh.. Taking a hot bath is asking fit trouble... Oh and the weakness in my left side affected my gait.. Before I went out of the country my left foot had started misbehaving.. flopping around and crashing sometimes... Did I mention the fatigue.. Sigh... Its been a roller coaster ride. Had a brain MRI done here in my home country 2 small infractions were seen on the frontal lobe... This story is getting too long... Oh and I can't do the lumbar puncture here because so many times things have gone wrong with people getting LPs and my family will not take the chance. My GPs sister has MS so I think he kinda feels that he's helping me by managing my condition as if its MS because he relates to my struggles through his sisters experience...I don't know if that makes sense. So in all honesty, I have not been diagnosed with MS, but I'm being considered as a likely candidate... although my ethnicity and location say otherwise..

[essdipity]

Oops. Above I said 'empathize' where 'emphasize' is what I meant. But I empathize with you too.

ess

[essdipity]

The others above have described our status so eloquently. I will not repeat what they've said, but I do want to endorse and empathize it.

I also want to encourage you to fight whatever barriers there are to getting a real diagnosis and treatment. Right now you feel helpless, and I'm guessing that's what's causing your dark mood. But as soon as you can regain that fighting spirit, do whatever it takes to get control of this situation. Get angry, if necessary, as anger can be a powerful help. But don't direct it at the disease. It's the barriers to proper medical care you want to fight.

And at a practical level, there are medications to help your symptoms now, regardless of diagnosis. If your GP is 'in your corner,' use him for all he's worth in this process.

Good wishes to you.

ess

[Lulu69cb]

I hope you feel better, God Bless you:)

[immisceo]

Your GP cannot diagnose MS. Please don't allow their hunch to cause you so much upset. That's placing the cart before the horse a bit. Is your lack of specific care (no neurologist appointment) an insurance issue? I'm not asking you to divulge anything personal, rather there may be options to help you get appropriate testing if a neurological issue is suspected. It is not sufficient to have a general practitioner posit a diagnosis, have you agree and together decide 'this is what we're going with'. *If* you have MS or another condition, you need actual treatment options.

Relax. If you have MS (I was diagnosed at 30), you'll almost certainly be pretty fine. Our lifespan is normal, we're no longer expected to end up in a wheelchair, many of us work full-time. Yes, it can sometimes be a real honey badger. But emphasis on sometimes.

MS, these days, is more often than not an issue of managing flares rather than more extreme things like becoming permanently bedridden or paraplegic. I think you may have a very outmoded picture of MS in your mind. Yes, it can be challenging. Absolutely. But doctors do NOT tell young women to avoid having children, for example, because they know, with some foresight and modifications, we can be fantastic parents.

And I'm not sure where you're seeing all the "fear, the anger, the sadness". Yes, sure. We do all deal with these things occasionally, but this forum is generally a pretty upbeat place! I see humour, commiseration, support, constructive feedback. And if people do use it to talk about the darker side of things it's usually because they're in the midst of the tricky diagnostic process or in a bad patch. We all have them! That's the 'support group' aspect of the forum. I've had little rants on here myself, but that's because I'm using the site for a specific purpose. My reality, my day-to-day at home is usually totally normal. I think that goes for a lot of us. You'd never know we have it.

I think you're in the midst of a fact-vacuum. You have had this big, bad disease name thrown at you with (it seems) very little information or access to expertise. Of course you're concerned! We'd all be in that situation. But please take a breath, try and focus on concrete steps you *can* take (getting the right appointments) and not the *what-ifs* you can't confirm or change. You'll drive yourself batty.

This is a fantastic place full of supportive people. If you're starting the diagnostic process, we'll be here. If you have questions, we'll be here. If you need to rant... you get the picture. For now, breathe. The mind can be its own worst enemy, going straight to worst case scenario. Focus on right now. Everything else is just understandable, but pointless, speculation.

[doublevision1]

I am so sorry that you're going through such a rough time right now. Despair is a good way to describe how many of use feel early on with this disease. Despair, horror, anxiety, fear, etc. At this point it is really important just to surround yourself with support, whatever that means for you. A partner, friends, family.....confide in and lean on whomever brings you some comfort and reassurance.

Can I ask why you are feeling like no one can help you, and why it is that you cant see a neurologist, why your GP believes you have MS? If you're comfortable sharing a little more, we may be able to offer suggestions that might help.

In the meantime, try if you can to not get too far ahead of yourself. It is just too easy to get overwhelmed when you start to dwell on all the unknowns and the worst case scenario, which I'm learning very often never even happens. Six years ago I was sure I'd be in a wheelchair by now and that my vision would have never improved. Well, my vision did return to near normal and I walk fine.

At the beginning it can be so scary especially if like me you know very little about MS, and if you have a low tolerance for ambiguity. I've learned so much since then, from this group, from my doctors, and from endless reading of journal articles and books to help me get my head around this disease. I have also become more comfortable with the uncertainty. Unfortunately with MS the docs cannot predict how any of use will do, how long our relapses will last, whether our symptoms will disappear for a while or forever, whether we will ever, as you put it, "feel normal" again. I don't feel like I did before MS. I too have a weird feeling left hand, sometimes annoying, sometimes uncomfortable, sometimes painful. I have complained, fretted, cursed, driven my husband nuts I'm sure, even cried, but after a while, it became my new normal and I've learned to peacefully co-exist with it. There is no other choice. If there is to be a new normal for you, you will learn to adapt to it and you will, but it takes time.

A couple of things that have helped me along the way:

1) I never asked "why me?" This is a question without an answer. You can make yourself crazy with riddles like these. I actually thought "Well, why not me?" As in, I'm no more special than anyone else with this disease. If anyone can get it - and MS does not discriminate - then there's no reason I should be especially immune to it.  

2) I always try to remember, it can always be worse. Trust me, I'm no Pollyanna and I detest the directive to just "Think Positive!!!" and everything will be wonderful. It is just not that simple. But knowing it could be worse makes me grateful that it's not, and that can help when you're feeling especially down.

I've been with this group for exactly six years as of today (don't know why I remember the date but I do!). I had been dx'ed a couple of months prior and was still very very upset. My vision was a mess and I felt like a stranger in my own body. There's no doubt in my mind that the support and feedback I got from fellow forum members was critical to my coming to terms with everything. I had never been involved with any online group like this, and had no idea how much help it could be. I hope you stick around and seek support, information and encouragement as often as you need it, as you will surely find all of that here.