Fibrofog, symptoms and diagnosis or ALS?

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jattd,

I am not a doctor, and don't know of one on this forum that specializes in Neurological symptoms. But, what you describe does not sound like ALS.

Your doctor mentioned Fibromyalgia. Have you pursued that avenue of thinking? Have you gone to a pain clinic for evaluation? There are other things besides antidepressants that can help with Fibromyalgia. Have you been to a Rheumatologist that specializes in Fibro or Rheumatoid Arthritis?

It sounds as if you are extremely anxious. If you have a disorder such as Fibro, anxiety only exacerbates the symptoms, sometimes to the point of panic (pains in the chest, etc).

Perhaps you should consider switching to a doc that specializes in pain management or rheumatology.

Again, this doesn't sound at all like ALS. I believe your pain is real, but sounds arthritic in nature. A pain clinic can help with injections to tender points to provide relief.

Good luck.
 
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Hello Jattd

I agree 100% with Jimercat: that isn't even close to being ALS. Fibromyalgia is certainly a possibility. I would suggest going to a specialist (e.g. rheumatologist) . . . and if that specialist can't determine what it is, then get referred to another.
Again, ALS should not be a concern at all; you simply have too many sensory symptoms.
Good luck and take care.
 
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hi jattd

i agree it could be fibromyalgia, i would see a reumatologist and get checked out, when i first got ill i saw one as it was suspected .
symptoms can be similar to umn desease in that you can have muscle spasms,cramps,clonus,weakness and fatigue also sensary symptoms even though its not neurological they think its a sensativity to pain in the cns.
there are blood tests that can confirm this.i had these blood tests and to check for inflamation but they were ok. they also check for sensative pressure points in the body.
here is a link to some info.

http://www.emedicine.com/pmr/topic47.htm

hope it helps, take care
caroline
 
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hi jattd

i have posted a reply with some web info on fibromyalgia, all the symptoms you mentioned do fit this. my reply with info will be here soon it just needs to be checked by a moderator as it has a web link in.
please go see a rheumatologist. alot of the symptoms can be like those of umn desease even the jaw ones, but if your reflexes are not hyperactive or you have no balance problems or lmn symptoms it is probably fibromyalgia. they treat it at a pain clinic and by physio and meds.
doctors once did not recognise it as a real illness and people were told its all in there head, but it is now a recognised dibilitating illness.
let us know how you get on if you see a rheumatologist, also if you type in
fibromyalgia support groups there are plenty there.
take care
caroline
 
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Jattd,

That's why we have this forum to vent. I have alot of the same symtoms, but I have alot of atrophy and weakness also.
My emg's are not dianostic of anything. Did you have an emg/ncv yet and what bloodwork have they done?
You should really see a rhemo it can be Fribro like the dr said. It can make you very tired its called fibrofog. It does effect your whole central nervous system but does not do any damage. Are you taking anything for the anxiety? Please google Fibromyalgia and you will see it fits your symtoms. 2 years with symtoms and no atrophy is a very good sign.....
 
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Fibromyalgia can cause such fatigue. And it can choose where it wants to hurt from one day to the next.

Hopefully Caroline's links will show up shortly re: Fibro.

One medication that may be helpful to you is Elavil. It is an antidepressant, but it is used at low doses for sleep in patients with Fibro. The way it has been explained to me is that Fibro patients do not get restorative sleep and therefore are in a constant cycle of pain and fatigue, as your body needs sleep to keep it fit. You may also want to try moist heat in areas that are giving you the most pain right now. The main thing you have to do is break the cycle to find relief. Trigger point injections, swimming and moist heat seem to help a lot.

Look for Carolines links and you will see that you probably really do have Fibro. And it is no joke.:(
 
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On Monday, I would recommend you make an appointment with the best Rheumo you can find in Houston.

The weakness you are describing isn't the same as ALS weakness as far as I can tell. I am speaking to you as someone that is married to a person with ALS and as a person that has Fibromyalgia. Trust me, you can get help for the pain.

If you have young children then you will want to check out the arthritic connection and know that you may be slightly or somewhat unable to do some things with your kids(depending on pain level for the day), but you will be around for a long time.

Like I said in my earlier post, I'm not a doc, just speaking from my own experience.

Wish you luck and please let us know how you are doing after visiting a Rheumo!
 
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I am not dropping things just feeling fatiuge in my both arm worse in the right they checked blood work a while back for rheumatoid and lymes and those things. How could a dr. They gave me litterly 5 min of his time diagnose me with anything. I have read about fibro its simular to alot of diff things. And the regular doc I saw said its a diagnose they give people because they can't figure out what is really wrong with or don't care.
 
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jattd

if you are crying all the time and having mood swings you are suffering from depression and need help/meds this could be a symptom of fibromyalgia.
have you had neuro exam? were your reflexes ok? balance ok? no definate neurological weakness say in one limb? if these are all ok you can have some peace of mind.
fatigue is a basic symptom of 1.000's of treatable illnesses and is different to neurological weakness. please dont torture yourself and find a good rheumatologist, i am sure with propar health care from a specialist in this will really help you.
go to your doctor tomorrow and get a referal,let us know.
god bless
caroline
 
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jattd

none of us are doctors here,we can only give you advice to the best of our knowledge.
you need to take control of this and go see your doctor,if you do get a referal to a rheumatologist there are tests to diagnosed fibro myalgia, you can have muscle twitching with this. you need to calm down, also something for your anxiety/depression, it can not be good for your children if you are crying and over anxious and i do not mean any disrespect by this just deep concern for you. we each have our own health issues to deal with on this forum and can only try to support,comfort and if possible advise the best we can. i truly am worried about you with regards to your depression/anxiety,please talk to your husband and see your doctor together,you definatly need alot of support, and we are always here for that.
take good care
caroline
ps, the info/link came up, if you go back to page1 its there
 
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Hey you!
I so totally under stand I lost 10 pounds over Christmas thinking like you!
we can tell you until we are blue in the face it does not sound like ALS but your mind will not listen until 1) you feel better, 2) some one (Dr.) nails it for you.
Mom has a great slogan FEAR: False evidence appearing real. When I went for all my test I said to my Doc, it could just be fibro, hoping it was that simple, but she said not probable because fibro is an inflammation and it would have showed something up in my bla bla bla test, to keep your sanity in the waiting game try and give your self 20 minute of vigorous exercise ever day, (skip rope. running etc) it will help release endorphins that will help you feel better, really! think of it this was "if I have something bad I will get my body in great fighting shape to battle it!" Now that was easy to say but I know when you feel like crap it is hard to do but say "I am going to do this for me" and when you feel better (which you will) you will have more happiness to share.
Please don't think these folks are dismissing your symptoms, they are just not saying Oh my Gosh, I am sorry that does not sound good" Take it as a positive, and that you are going to be around for a long long time with your kids!:wink:
 
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Having muscle aches and pains . . . and having joint pain . . . does not mean you have ALS. All I was saying, was those are associated with ALS . . . that is all. Muscle and joint pain is associated with many, many, many, many things. You said that you have burning pain, which is neuropathic . . . which again . . . is not associated with ALS. If you have that, then there is a differential diagnosis . . . e.g. fibromyalgia, CIDP, etc., which are treatable. Please try to relax and focus on the positive things in your life. In time, you will be fine and will be able to enjoy your life again.
 
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jattd,

We all do believe how you feel.... I am undiagnosed, and i am declining rapidly. I have alot of atrophy and can barely walk, but because my emg's are not dianostic of anything they can only say they don't know what is wrong with me.
I am scared to death as well, I have 2 children ages 4 & 7 and don't have alot of help either. My husband works on the weekends as well. Did you see a rhematoligist yet it sounds like it could be fibromyalgia. I believe you said you had brusitis in your shoulder that is very painful and needs rest and treatment to feel better. MY mother-in-law has it as well in her shoulder
and when she has a flare-up she can't do a thing.

Are you taking anything for anxiety? Your anxiety can make things feel 10 times worse......
Please take care of yourself , the way you feel will reflex upon your children.
 
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The reason it is hard for anyone to believe you have ALS is because your EMG came back clean. You say your Nerve Conduction also came back clean---this means your physical nerves are NOT the problem.

Look, you need to take the advice from people that have tried to help you here. I, for one, know that you can have the pain you describe with Fibromyalgia. It is not clear in your posts if you ever sought out a specialist in Fibro for an exam. I can tell you that in my own experience, Fibro can drain you of energy, which is why lots of people with Fibro are diagnosed with Chronic Fatigue Syndrome.

From Wikipedia re- CFS:

* Neurological/cognitive manifestations: Common occurrences include confusion, forgetfulness, mental fatigue/brain fog, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances (e.g. spatial instability and disorientation and inability to focus vision), ataxia (unsteady and clumsy motion of the limbs or torso), muscle weakness and "twitches". There may also be cognitive or sensory overload (e.g. photophobia and hypersensitivity to noise and/or emotional overload, which may lead to "crash" periods and/or anxiety). A review of research relating to the neuropsychological functioning in CFS was published in 2001 and found that slowed processing speed, impaired working memory and poor learning of information are the most prominent features of cognitive dysfunctioning in patients with CFS, which couldn't be accounted solely by the severity of the depression and anxiety.[31]

From Wikipedia re - Fibro:

The defining symptoms of fibromyalgia are chronic, widespread pain and tenderness to light touch. There is also typically moderate to severe fatigue. Those affected may also experience heightened sensitivity of the skin (also called allodynia), tingling of the skin (often needle-like), achiness in the muscle tissues, prolonged muscle spasms, weakness in the limbs, and nerve pain.


From Wikipedia re - MPS (associated with the above):

Myofascial Pain Syndrome (or MPS) is a term used to describe one of the conditions characterized by chronic pain. It is associated with and caused by "trigger points" (TrPs), sensitive and painful areas between the muscle and fascia. Simons has visibly identified and documented these contraction knots through electromyographic imaging, ultrasound, and biopsy.[citation needed] The symptoms can range from referred pain through myofascial trigger points to specific pains in other areas of the body.

I really, really wish you would check this possibility out. It is not fun to live with this disorder, but it is nothing compared to what you have convinced yourself you have. Do not visit a doctor that does not specialize in Fibro, as they will be ignorant and tell you once again that it is all in your head. And by the way, Fibro usually hits women more than men, thus the "all lin your head" thing! Why would you not want to check this angle out?
 
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thank everyone for all you caring and compation

The bursitis I have. Mild in the left arm now my right arm and shoulder are killing me it feels like the bone and muscle hurt and they feel fatigued. I really believe fibro is something drs say when theyvare ata loss. Also this has not been going on for 2 yrs except for the back prolems everything a year and the right arm started about a month ago I'm so exhausted I can't barley make it through the day also I only had the upper emg and nvc I have an appt tommorow for the bottom and I'm scared to death I almost don't w,t to go. My husband wants to put me into a hospitial to get help but have knowone to wqatch the kids and no money I am so bad I could even remember to pay my car payment and now I'm really screwed. How could someone so afraid of dying not want go on. wonder
 
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