Really Scared Now

[brooksea]

Good Luck and have a wonderful Thanksgiving with your family!

 

[kathmc]

symptoms /als/epstein barr

Hey,

I'm glad some symptoms have abated & your neuro has ideas of other diseases to check out. wish my neuro had done that.

Neuro's 1-3 couldn't find the 1 disease ( MS ) they were looking for: neuro #4 said I was perfectly normal--no sluggish F waves, clonus or brish reflexes the neuos b4 her found. neuro # 5 thought pls right away but parkinsons was his thing so he sent me to als neuro who spent almost no time w/ me/agreed on pls & i'm stuck as they don't entertain thought of anything else after decision. lots of difference neuro to neuro.

hopefully treatments that help epstein barr, etc will help. best of luck to u.

kathy
lexington, :-Dky.

 

[myooshka]

I hope you find an answer to your problems. Doctor's seem to love the anxiety diagnosis when one can't be found. Keep pushing for answers only you know your body. I as well had the foot pain and was told to get orthotics, when the cause of my foot pain was because my muscles were shrinking. I am at neuro#6 and still no diagnosed after sixteen months. It can be really frustrating getting an answer, we think a lot of these neuro's know a lot about neuromuscular diseases but they don't, and I have found what Kathy mentioned the opinion varies depending on what neuro you see. I hope this clears up for you and I hope you get some answers. Mya

 

[MtPockets]

Kathy,
Wow, ever feel your are on a Neuro roulette wheel, and this time the diagnosed lands on ? Place your bets folks, hit the dart board and win the magical diagnosed.
Doctors are so weird sometimes, I know I have one for a son.

This past week all the kids were over for my wife's birthday. My son noticed my feet were swollen, duh, have been for past 6 months, and my son the Doc, took my wife outside and told her she needed to get herself prepared for me to die. I obviously had Congestive Heart Failure and would drop dead at any time.

This is the same Doctor son who refuses to review my medical reports, muscle biopsy, etc, that lead to the initial DX of ALS back on May 11, 2006. He is still in denial about ALS but can tell by just looking at my feet for 30 seconds that I Have CHF?

Bless his heart I know he is still floating down the rive de-nile about ALS.

I always try to consider what has the Doctor (or my son in this case) gone through this week. Look at it from their perspective. He is an Emergency Room Doctor, Did he have to tell 15 people that their child, wife, loved one was dead in the ER this week. Did he have to deal with drug addicts, prostitutes, drunks, etc. What kind of Hell has he been put through at work, at home, with family problems, etc. Working an average of 80 hours a week, while raising a large family.

Regardless of what we think, Doctors are just as HUMAN as we are and subject to mood swings, pressures of work, bills, family problems, personal problems, etc. Then we walk into their office wanting a DX after talking to them for 15 minutes, because after all this is the 5th Doctor we have been to and still have no DX. So we get frustrated to say the least and want to take out the ball bat and dance all over their heads. Break out a can of whoop asp. Maybe 2 or 3 cans.

I'm just saying we all get mad at this crazy process and sometimes we take it out on the Doctors or their staff, because after all we are scared and want to know what the heck is going on, RIGHT? But , consider this for a moment, if they go ahead and give you a diagnosis of ALS, what are you going to do differently? Yeah, now you have a name for it, but the end results are going to be the same. There is no treatment. I know we all hope for some disease that has a treatment, don't get me wrong, I'm not playing that down. Just trying to play the devils advocate :twisted: for a moment and have you consider the Doctors point of view.

OK, I'm ready for the bashing now. Go ahead. I can take it. I'm a big boy now at 61 years old.

Oh by the way, I hope you have a great week end.


God Bless
Capt AL

 

[Icanmanz]

Al, your son, bless his heart, he is in denial alright. I have been down that alley. We as loved ones know exactly what is going on, but we are refusing to accept it. A lot of times I was dying to hear my phone ring, and have my son to tell me that he went for a follow up, and his doc told him it was not als after all. I never got such phone call. It was all wisful thinking. Als is such a monster. I only pray to our Father that a cure is on its way. May God bless you and your family. Have a nice Turkey Day.

Irma

 

[JAndrew]

I hope you find an answer to your problems. Doctor's seem to love the anxiety diagnosis when one can't be found. Keep pushing for answers only you know your body. I as well had the foot pain and was told to get orthotics, when the cause of my foot pain was because my muscles were shrinking.

Wow, that really sucks. I was starting to feel better about everything and now I think Im getting scared again. I am on restricted duty at work and I cry about 10 times a day.

So, I have the pain in my feet and now my feet are occaisionally cramping (mostly at night). I get cramps throughout my hands (fingers, palms, thumb muscles), and my hands and fingers are tingling a lot as well. My forearms get tight and fatigue quickly when I do things such as use a screwdriver or continually flex my fingers. My hands bother me at night too. I wake up and they are tingling like crazy, as if the circulation is just not getting to them. I can shake that feeling out pretty quickly, so is that common with ALS or early ALS? Can you shake out the tingling in you hands?

My jaw feels tired when I yawn too and early in the mornings my upper lip feels numb and it's hard to talk. I almost fell over this morning while I was brushing my teeth. I was just leaning over to grab my toothbrush from my wife's side of the sink and I had to scramble to catch myself.

I can't believe this is happening to me. My life had been going so well. My dad died when I was 14 and I grew up in a very poor area of Orlando. I was so sure that my kids wouldn't have to endure the things that I did. Maybe I'm getting ahead of myself here.

Are there other Neurological disorders/diseases that can account for my symptoms? Are there multiple things that can produce these symptoms? Can all of my symptoms be anxiety related? Keeping all things in mind I felt fine just a few weeks ago and now all this hit me just over the last 3.5 weeks. Has anyone ever heard of ALS coming on so strongly? :shock:

 

[myooshka]

There are so many different neurological illnesses, I think it's a matter of getting a neuro who will listen to your symptoms and then they can go from there. It can be a long road to finding an answer. I had had headaches for a year before I got ill but besides that I was an active healthy 30 year old. I was working in my yard landscaping for 12 hours a day and then my illness came on strong. I also had the tingling and the pain in hands and feet, all the symptoms you are explaining, the stiif jaw etc. I know exactly where you are coming from when you are talking about your children. I lost my parents last year which is nothing compared to you losing a parent as a child. I grew up poor and our lives were going so good, we want to give our children the world,we want their lives to be so much better than what we had, it's human nature. It would be nice to explain symptoms on anxiety which I have been told if you are hyperventilating can be the cause of tingling, but you sound scared but calm. Hang in there, fight till you get an answer and don't be afraid to get ,2nd 3rd 4th opinions. Stay in touch, Mya

 

[JAndrew]

you sound scared but calm.

I'm glad that panicked tone doesnt come thru in my posts! :-D

 

[myooshka]

I understand that panicked feeling, it's just sometimes in posts, somtimes you wonder if it's anxiety causing the symptoms, you don't come across this way. Before you go ahead with more doc's consider getting all of your insurance needs just in case. It's good to have it even when we're healthy, many of us never imagine getting ill.

 

[JAndrew]

Podiatrist Appointment

Well, my Neuro sent me to the Podiatrist, whom I saw today. He took x-rays of both feet and told me that my right foot is "rolling-in" on the arch, which is causing the arch to flatten and putting excess strain on the Plantar which is in turn causing pain and cramping in the soles of my feet. I told him my concerns of ALS and he started bangning away on my foot and told me there is no detectable nerve damage thru physical examination, but that to assuage my fears I should have a complete work-up with EMGs and NCVs and I'd probably feel better then. He also said there are lots of ailments that can cause nerve/muscle damage and not to jump to the conclusion that it is ALS. So, Im still trying not to go nuts for now.

 

[JAndrew]

Before you go ahead with more doc's consider getting all of your insurance needs just in case.

Yea, Im going to do that. If I die I would like to have peace of mind and know that my family will be secure after my passing. If my wife is secure and able to care for the children my mind will be at peace.

 

[myooshka]

Search this forum under life insurance and read some of the threads it may give you some ideas of what and what not to do as far as insurance. There are members on here who have sold insurance that I'm sure would help you if you have any questions. I found it good to know that some policies have a clause where if you seek medical advice about a health issue and then get diagnosed it will not pay out, but others do not have this clause. Right now if your doctor is saying it's anxiety and your foot problems are because of your arch rolling in thats what you go with. I guess the key is not to lie, just don't give them anymore information than they need. Take care, Mya P.S. Don't do what I did which was sit around and ponder about the insurance and now there is documentation of muscle wasting so now I'm sure it's too late for me to get more insurance. Even if you get better, you can never be too prepared.