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Urgently need advice please help

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Old 01-27-2005, 01:44 AM   #1
Join Date: Dec 2004
Posts: 85
mletters HB User
Urgently need advice please help


I normally post over on CFS board as I've recently been dx by Neuro and Rheumotoligist. Over the past few months, I can't begin to describe the 'episodes' I am going through.

The most recent one started last night. I'd just had reflexology and at the time couldn't catch my breath. At the same time, I noticed that when I turned my head my neck and parts of my back were in extreme pain. But ok when I 'centered' my head again.

When I got home last night, lying down made it ten times worse. I then got pains radiating over the back of my head to my forehead and I just felt spaced out with problems focusing.

When I went to bed (after taking 2 tylenol PM), my body felt tired, I was drowsy but my muscles wouldn't relax. I just felt tense all over my body. I tossed and turned until around 4am then managed to get 2 hours sleep until around 6am. I keep getting jurks all over my body. When I do sleeep I have vivid dreams/nightmares, and it's as though I'm awake and asleep at the same time.

When I woke up this morning, my mind wouldn't stop racing with nonsense thoughts (as it has been doing for months now). I then started to panic and started crying thinking I am going crazy. When I was trying to get ready this morning, I just feel dizzy, sick and very panicy. I feel light headed, as if I'm walking on air.

I just keep thinking that if I goto hospital and they run a CT or MRI they are going to find something wrong with my back/neck or spine (or will they just pack me off to see a Psychologist?!?!

I know it's not all in my head and I have so much trouble explaining to other people the symptoms of this. It's not like a broken arm where you can point to the problem. It definately feels like my nerves are shot or something. Then I start to worry about MS. I had a Brain MRI done in Dec 03 and it came back normal (this was the onset of the symptoms). Apparantly, my Neuro said he wasn't concerned about MS.

I was like this for four months (Sept 03 - Jan 04) and then had some good months with mild symptoms (Carpal Tunnel, Hemeroids, odd nightmares and waking up early - but they were managable).

The strangest thing with this, is that If I look at someone or talk to someone I loose my train of thought, I just stare and I can feel how uncomfortable the other person is talking to me. I get jumpy and just want to escape. I can't concentrate on a conversation because of the pressure behind the eyes/forehead. I feel stupid. This is episodic. It comes and goes.

I don't want to be here anymore. I'm sick of trying to explain how I feel. AM I GOING CRAZY?

I have taken a valium (which I hate doing) to try and calm down this morning. I think it's kicking in. WHY does this fix the problem? Why can't the cause be treated and NOT the symptoms.


Sorry for burdening you with all off this rubbish but I can't make sense of it anymore. I'm petrified at the thought of being like this for the rest of my life! I have a 2 year old son and Wife who I desparately love and want to take care of but feel I can't even look after myself. I'm not strong!

I just look forward to better things to come at the end of this (in this life or the next!)

Take care & Thankyou for listening.


Tests taken so far : MRI Brain - Normal, no lesions. Blood tests normal. Thyroid, normal.
Confirmed DX so far : TMJ, Carpal Tunnel, Saliva DHEA/CORTISOL abnormal (lower midnight cortisol, ELEVATED DHEA), Liver ALT elevated (60?)
Awaiting : SPECT scan, Endrenocoligist (spelling?), Vestibular function testing (1 year waiting list!), CBT.

Onset Sept 03 - Dizziness when leaning forward followed by brain fog/loss of concentration/pressure feeling. Tinnitus, IBS, Chronic insomnia. Eased off Jan 04 - Oct 04. Now worse symptoms than before!

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Old 01-27-2005, 06:42 AM   #2
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Join Date: Nov 2004
Posts: 41
llcoolbeans1 HB User
Re: Urgently need advice please help

First of all you are not crazy! But I fear your anxiety is creating even more problems for you. That is probably the reason for the nightmares and difficulty sleeping. You may want to try some relaxation techniques. I know this sounds too basic but believe me I know where you are coming from and it has worked wonders for me. I have not been diagnosed yet with anything and have had a zillion tests run. I am awaiting an MRI and my first neurologist appointment. It is very difficult for me to explain to people what is going on in my body. To them I look exactly the same. They don't understand the depth of my fatigue or the weird feeling in my head. I am not exactly dizzy but almost light headed or as if I have taken too much cold medicine.

Did you have a MRI of your spine? I hear MS lesions appear there as well. The head thing I have heard is very common in MS sufferers. It is called L'hermitte's sign but it is also seen in other illnesses. Keep with it and don't let the doctors brush you off with a simple diagnosis. I have noticed many people originally get the diagnosis of anxiety or depression as if that has caused all their symptoms. I work in the mental health field and see that as an excuse all the time. Of course you have anxiety and depression...who the heck wouldn't, considering all the crap our bodies are going through. I have had a couple mini panic attacks over the past few months. Fortunately due to my profession I know all the signs. I was able to calm myself down immediately. I told my doctor who said it is so understandable. He was great about it but did try to push the Lexapro on me again. I declined.

As scary as all this is, you have to try not to worry so much. Easier said than done I know. It is better to get the tests than to worry so much you cause panic attacks or end up with an anxiety disorder. If you have MS you must remember it is not a death sentence. It is something you will die with not from. Stats show that 75% of all MSers live full productive lives. It is only 25% who end up severely disabled. The medications they have are outstanding and they are making advances every day. Who knows, but maybe with all the stem cell research they may find a cure for it in our lifetime. I have been taking great comfort in this as I await my diagnosis. I have many days that I worry myself sick and only want to cry. But I have to remind myself I will get through this.

If you are diagnosed with something serious expect that you will go through the 5 stages of grief just as you would if you had a loved one die: Denial, Anger, Bargaining, depression and Acceptance. You may go back and fourth between the stages or cycle quickly through them all. We all handle this differently, but we all experience it. Kubler-Ross was right on when she wrote her book Death and Dying.

Sorry, time to take my counseling hat off. Occupational hazzard! Please hang in there and don't let your doctors brush you off. We are hear to listen if you need to vent or ask questions.

Old 01-27-2005, 04:07 PM   #3
Senior Veteran
Join Date: May 2004
Posts: 1,069
apriltones HB User
Re: Urgently need advice please help

hi mike, i can really understand you. its like looking at my self. my anxiety and depression was helped with meds,.lately i have been low,no sex drive as im fed up of not knowing whats wrong and waiting forever for a mri!! its the waitng and unkown that gets to me!" april x

Old 01-27-2005, 05:46 PM   #4
Join Date: Jan 2005
Posts: 1
Lipsticklady HB User
Re: Urgently need advice please help

You're not crazy. I have MS and have had L'hermitte's's very real. Makes you think you're beeing electrocuted from the feeling.

I think some of your other issues may be anxiety related too. I've suffered from that also. A great book to read---From Panic to Power by Lucinda Basset. Check it out as soon as you can. You'll love it, and it'll help you get through anything. It's a quick read.

Good luck--keep me posted on your progress.

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