diagnosis? anyone help please?

[rich11977]

Hi all I wonder if anyone has been through similar.I am 40 years old and have been unwell for 3 years now.My original Gp referred me to himself at a hospital(he was a specialist neurologist) His considered opinion? I was depressed! I found myself a new gp who has run some tests`.The Mri scan came back as normal.The NCS was normal but the EMG was abnormal.The Doctor that did the EMG said I needed a Muscle biopsy but my Gp refused as it was too expensive.He referred me to another neurologist who doesnt think I have anything neurologically wrong with me but has ordered another Emg as he doesnt believe the results of the first.

My symptoms are heavy aching limbs throbbing hands and feet tingling limbs very very tired ALL the time heavy sweating from my head and face when exercising(which I can only do for three to four minutes without having to stop.

Would any kind person be able to give me some pointers please as to whats going on.They cant do anything untill the next EMG which,because of the waiting list,is not due until December

Thanks for reading

[rich11977]

Having looked into gluten allergy's and post polio syndrome I am stunned that 2 totally different diseases can be so similar in symptoms.I have never had polio but all of the symptoms match especially the early afternoon tiredness and swallowing problems(which incidentally is very scary)

Ah well 13 hours to go before the ncs/emg......

[rich11977]

Hi Mya hope you are well today?Thanks for adding me as a friend I have tried to accept.Still getting used to the site so I hope I did it right

[rich11977]

Hi wannadance thanks for your imput.I dont think I was immunised against Polio strangely enough and I know that my Dad actually had the disease as a child in the early 50's.I had to laugh at your comments about doctors(although please dont think I laughed at your situation) It wouldnt surprise me to see gp's issue prescriptions for prozac to dead people.I guess what I,m trying to say is I dont have much time for doctors anymore although I should try because I have my second ncv/emg tomorrow.Had to go private for it though £461 that could be spent on the kids

Hope you are well today Wannadance

[myooshka]

Well stay in touch I'll add you to my friend list and I hope you stay in touch and let me know how you make out. Stay strong. Mya

[rich11977]

Totally understand where you are coming from Mya I often wonder how long I will be around to take care of my two boys.It is so frightening to think of what will happen to them.My main problem is my neck.I can barely swallow at all when I am laid down so that makes getting to sleep very very difficult.No one seems to understand at all what it is like.Prior to this I used to think if I got sick then the doctors would sort me out.Now I know different.Thanks to all that have replied.I wish I had a magic wand to wave and make us all better

[myooshka]

Try not to worry about als, if you are having sensory symptoms probably not als but I have been down that road and a few people do get some tingling. One lady I have become friends with it took 4 years to diagnose him and by then an idiot could have diagnosed him he couldn't even use his arms anymore. they went through the ringer the even did back surgery on him and carpul tunnel surgery cause they thought they could fix it, the whole time it was als, he even had four normal emg's they did not show anything until he was really bad.........but the good thing with you is three years if ALS you should be worse of most people lose the use of arms and legs quite quickly, and some are more slow. I hate these illnesses only to be able to look forward to upcoming Christmas's., birthdays with excitement instead of fear. I hate to live like this but just live for everyday and be thankful for everything you have, and for your children. I had my first symptom one week before I was pregnant with my first child and I am so angry that the joy of pregnancy was taken away from me and replaced with fear. I hate that I have to look at my son and wonder if I will be around when he goes to school. I try not to think about in and just enjoy everyday the most I can even though it really *****.

[wannadance]

another comment: i just HATE how that ole depression makes your arms and legs lose muscle and makes it impossible for you to walk or use your arms and end up in a motor wheelchair like mine.

mean ole depression!!

idiot doctors.

[wannadance]

did you by chance have a mild case of polio in your early life? i did, and now have  postpolio syndrome which sounds a lot like this this. usually ALS progresses more rapidly and it becomes obvious to all that it's ALS.

still, the only way to distinguish ALS, which is, as you say, a terrifying possibility, is by EMG and  if it was negative for ALS, then you don't have it. actually, after three years, if you did have it, you wouldn't still be here, most likely...

you were probably immunized for polio,but your syx sure do sound like it, esp. the slow progression and muscle loss. there is no definitive test for it at all, just have to rule out everything else...

i am irish descent, too. i'd think with celiac ds, all you'd have to do would be stop eating wheat and anything that contains it. but there might be gut damage. hmmmmmm. since there was no way to know for sure that i have postpolio, maybe i have sprue. dern.

i sure hope you feel better. i know how much you are suffering; i just can't help you, i can barely type either.

wannadance

[rich11977]

I know but the most scary thing is ALS.That must be one of the most scary diseases ever and now with them ordering a second emg I am starting to think that that may be what it is.It seems medical care over in the States is as bad as here in the Uk

[rich11977]

It certainly does look like there is a rogue gene in your family causing this.Maybe some sort of Dna test could help? I,m the only one ill in my family my father is 65 and still works full time and my mother and sister are both ok.It just seems to be me,in fact my Dad thinks I,m just been soft and should just get on with things.Hmm thinking about it he is just like my gp lol

[myooshka]

Yes huge impact changes your life completely. everything once easy now difficult.I always think and fear what six months will bring. If you are still walking and talking you will be around don't worry and don't expect when you do get an answer for a miracle drug. Most neurological illnesses they treat the symptoms. Maybe try and get a blood test (most accurate) for food allergies and get tested for celiac, do some proactive things for yourself see if you feel better, the medical community will probably give you neurontin, some pain killers, no fix for the problem.

[myooshka]

As well do you have anyone with autoimmune diseases in your family, besides my two sisters being celiac, one has rheumatoid arthrits which is common in celiac, from what I read someone with celiac IS 10X more likely to get an autoimmune disease. I am thinking our family is genetically flawed we have a huge family on both sides and everyone is healthy except me and my four sisters, the only one who is healthy is 17 and we were all healthy at that age, very troubling. I am thinking that celiac may be the underlying factor for our families health problems.

[rich11977]

I dont think they realize the impact these things have on peoples lives.For instance a couple of weeks ago I went on holiday with my children.The youngest(3)managed to slip his armbands off in the pool and got into difficulties.I dived in but barely had the strength to lift him to the surface and keep him there.3 years ago I would have been able to pick him up with one finger! Even typing this I have to stop as my hands ache so much

I wasnt depressed back then but I sure am now and the worst thing is I have a neuro who is actually quite good,thing is he is booked up 6 months in advance.The last time I saw him in July he suggested a second ncs/emg.This will take place in Nov then after the results come back (4 weeks) I have to make an appt with him so that will be May next year.The way I feel at the moment I doubt I will see May 09

[myooshka]

Rich I lost my respect a long time ago. I heard somewhere lately that the biggest advance in medicine is that the human body is much more complicated than originally thought. I have lost faith. I had one really good doctor but I have since moved, he would actually admit he new something was wrong but he didn't know what it was. He told me the human body is so complicated we only know so much, most doctors will not say this, nope that's where the depression diagnosis and the prescription for zoloft comes in.

[rich11977]

Apparantly people from Ireland or descendants of people from Ireland are much more likely to have this disease.The rest of the world has been eating wheat for 9000 years but the Irish only for 3000 so in terms of tolerance they are years behind the rest of the world.Totally agree with your comment about some doctors.I went to my Gp last week because I could not swallow.He did not even look at my throat but said it was just related to everything else that was going on.Later that night my throat swelled up so much my wife took me to Casualty.The result? Chronic tonsilitis and quinzeys(sp)

I am rapidly losing faith with the medical profession over here

[myooshka]

Yes also depression and anxiety is the standard answer when they don't know what it is. I tend to think it's an ego issue partly and an ignorance issue. Dr's are simply ignorant to many illnesses and diseases.

[myooshka]

I'm sorry I'm not understanding what your parents being born in Ireland has to do with this?

[rich11977]

Very interesting indeed.Both my parents were born in Ireland too.Thanks for the heads up Mya I think a long nights reading is ahead

[rich11977]

Thanks Mya I'll check that out.The first neuro tried to tell me it was depression too.Maybe when they are stumped they come up with depression as a standard answer?

[myooshka]

Dear Rich I have been experiencing similar symptoms for 2 years. At first they said depression and then when they started to see the muscle problems then they were stumped, all of my test have been normal. I have hyper reflexes, i have muscle loss and the tingling, burning etc. I used to be able to exercise and now have extreme fatigue with small tasks. My advice is don't let them tell you it's depression. And keep pushing for answers, if one neuro shuts you down look for another one. Try and find a doctor who specializes in neuromuscular disease. It is a very frustrating road as I mentioned I am two years undiagnosed so my advice; hang in there. Have you been tested for Celiac, it runs in my family and I was surprised to read in some people, they call it silent celiac because it doesn't affect the bowel but actually can cause neurological problems, just a long shot but who knows. Google celiac neurological, many articles on this subject, see if it fits your symptoms, may be a shot in the dark but I know as well as you when something goes on this long we'll look anywhere for an answer. Good luck, Mya

[rich11977]

anyone?

[rich11977]

One other thing I have remembered is I also have hyperflexia(sp) increased reflexes apparantly

Can anyone give me any pointers?

Thanks

[rich11977]

Thanks Clarey.Thyroid test is actually one of the tests they have done.I did a bit of research on the net and I came up with that too so I asked my Gp who said it had come back normal.Thing is they are so slapdash that I may ask for another one

Thanks again for your answer

Rich

[Clarey42]

Hello Rich:
When all else fails check the thyroid level because 75% of the things you mentioned are controled by the thyroid. Including the heating problem and causing many muscle problems. Most doctors don't start with the simple blood test for this because there is just not any money in a blood test. Here in the US they call the test a TSH panel test I am not sure what that stands for exect that the panel is more indepth that just a regular thyroid test. Good luck.

Clarey42