Multi-system atrophy fear, going back to the nuerologist

[emanticoff73]

So I still have parasthesia and mycoknic jerks in my arms and significant pain in shoulders, hands and fingers. But what has rely got me down is the thigh, calf, butt and foot pain bilateral. It's like a burning tight pain like I have worked out, sore if you will. But the bones hurt too. My knees and heels are really bad and that's not nuerological. So what gives. I have shoot I g pain that goes fro my neck in to the tops of my shoulders. Also down my arms. My doc thinks it a CERVICAL issue and is sending me for an mri and back to the neurologist for my first nerve conduction study test (emg)god help me. I want it done of my legs and arms. My question is this. I looked up peripheal nueropathy and what came up with it was this multi system atrophy that affects your aunotomical nervous system, like blood pressure, heart rate, breathing rate, bladder control, digestion, muscle rigidity, your pupils, muscle control and so on. It said by 7 years your dead. A systems fail. What the hell. Now I'm checking my heart rate with my old stethoscope from when I was a paramedic and my blood pressure. Checking dilation of my eyes for dilation, is my digestion working right? Etc. Etc, when you have a panic attack your breathing is altered so now I think my nervous system is failing cuz I'm short of breathe. Woke up today nauseas and though oh god my digestion is failing. That is scary disease right up there with king **s. Anyone ever hear of this. It's rare I think. Hopefully. I have something going on nuerologically but also with joints. Makes no sense. I hit 44 and fell apart. My father in law passed a,few days ago. Now we are really alone with two kids. The pressure is so bad I cry daily. I can't die I won't allow it. I HAVE TO SEE MY BABIES GROW UP. SORRY BUT I'M QUITE AN EMOTION WRECK STILL WAITING FOR A PSYCHIATRIST. HAVE A REFERALL BUT WAS TOLD NO OPENINGS TILL JANUARY. THIS IS NEW YORK AND I CAN'T FIND A FRIGGIN PSYCHIATRIST. EITHER THEY DON'T TAKE INSURANCE OR THERE NOT TAKING PATIENCE. I FEEL HOPELESS. :weep:

[Fishmanpa]

Every state in the US has resources to help. IMO, based on your post history, real life help would be the best approach at this point. Please... Go to https://www.mentalhealth.gov/index.html and contact them. When my wife took ill, I thought she was having a mental breakdown and I contacted them. They put me in touch immediately with a mental health professional who advised me.

Positive thoughts

[melfish]

I know someone with MSA. It's not a subtle disease and it has A LOT of differentials. It took him a long time to get a diagnosis. What you are describing is not how it presents.

[tryingtosurvive1]

1) Please hold your horses. You don't know if you have peripheral neuropathy. Right now you just have pain. Could be biomechanical, getting older, etc

2) It's a BIG leap from PN to MSA. I actually have large fiber peripheral neuropathy, I've had it all my life but only found out when I got more symptoms. Mine is due to a genetic mutation (also known as Charcot Marie Tooth). I'm telling you this not so you will worry about CMT (it's pretty rare) but because it is way, way less severe than MSA. MSA is basically a particularly bad form of Parkinsons. (Parkinsons 'plus') I have no idea what it looks like but you really can't diagnose yourself.

3) You can't diagnose yourself. I thought I had everything under the sun. Had to go to the dr's to figure out what was wrong.

4) Please go ahead with treatment but remember that anxiety, postural, and age related explanations for your aches and pains are the most likely answer.

I hope I didn't upset you by discussing a real health problem, but wanted to underscore that jumping from pain to PN, and PN to MSA, was pretty wild.

[melfish]

HOLD YOUR HORSES. I bloody love that expression ;)

[Fishmanpa]

I actually have peripheral neuropathy in my feet due to chemo treatment. I take Gabapentin and it takes the edge off. I won't elaborate on the symptoms. It sucks but it's not the end of the world.

As has been noted, you're catastrophizing. You passed a neurological exam a month ago.

Hope you feel better soon

Positive thoughts

[emanticoff73]

Horses held, lol. Let me elaborate. It's not just pain. Started with a horrendous headache for 2 weeks with crawling sensations on my head and severe jaw pain. Along with that started muscle twitches, and muscle jerks, where limbs were jerking while trying to sleep. That lasted a month with no pain just extreme anxiety because of the muscle twitches and jerks, now the pain has started. In neck, shoulders down my arms on to my hands. After two weeks of that which is still going on started the foot, calf, thigh and butt pain. Burning muscle pain. I would be standing and all of a sudden. I would get a full body attack of pain from my head my arms and down my legs. My bones and joints are cracking and popping a over the place. Sometimes I could be talking to someone and my arms will jerk by themeselves. It's a feeling of anesthesia of sorts. I was going on and off ativan too . Back on it, couldn't handle the cold turkey. Now i have upper abdominal pain like gastritis which may be due to taking pain killers. Took meloxicam motrin and the stomach pain started. In the description of multi system atrophy it said could also affect digestion that's why I freaked. I looked up peripheal nueropathy and multi system atrophy was listed on the same page. That's how I found it. I'm really scared guys. I'm being sent for a brain and neck MRI and and going back to the neurologist for an nerve conduction test. I had a history with palpitations and tachycardia 5 yrs ago. Still get Palpitations but no tachycardia. Like ALS ,MAS IS EXTREMELY SCARY. My pupils still dilate, i still sweat, my blood pressure has been low my whole life, my bladder works, still have saliva. I know i must sound NUTTY. But it sucks when your sick and don't know what's wrong
Went to the ER 2 days ago and BLOODWORK was normal except for a 190 glucose level. My creatine and kinase was normal so no muscle damage. Have had about 6 rounds of BLOODWORK in the last 3 months. Think I need a rheumatologist visit. Just hope I'm not dying. I have two small babies. My husband and I are alone. No family. If something happens to me he's alone with two babies! I'm at my wits end mentally. I lay awake all night saying god don't let me die, think of my kids. It's a horrible way to live.i just want a diagnosis already. And hopefully it's treatble and not fatal

[tryingtosurvive1]

The number of problems that have Peripheral Neuropathy as a side symptoms is huge. There is no reason to fear MSA in particular. It's magical thinking.

The nausea and elevated heart rate are probably from anxiety.

I don't know why you are in pain but *please* try to stop reading about MSA.

[Elliejane44]

Hi

I really very much doubt it msa. It very very rare

I am having similar issues to you see my post . I worried it fibromyalgia !

Ellie

[daisyflower]

My grandad had it. It's extremely rare. He was in his 70s when he got it, how old are you?
Your symptoms sound NOTHING like this.

[emanticoff73]

I'm 44. Sorry to hear that about your grandad. How long can you live with it? . Some websites say 7 yrs others 10 yrs. Im so consumed with the fear some nuerological conditiin is going to take me out. Are all nuerological problems that bad or are they all catastrophic? Dying a little more everyday. The life is being sucked out of me.