Worried about where this is going - 1 year 10 mo. update

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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 21st, 2015, 11:55 am

Misterjuan - did you mean those clips for me or LeafLea? The 2nd link did not work for me, but I did watch the first. I had not seen those stretches before. I will try them out. Thanks

Leaflea - "it can drive us mad"....this is a real understatement.

I have not been well mentally lately. I have been at the hospital psycho dept recenlty twice to discuss my mental situation. They want to get my meds changed, started Cymbalta and Seroquil (spelling?) and I go back on 2-June for another appt. They have indicated that I may need to stay there for awhile. The doctors are calling my other doctors to get more of my history...I am going to e-mail them all of my neuro evaluations, since in two from one doctor, he diagnosed me with depression and psychosomatic, and the other neuro said I was normal/mentally stable.

In the meantime, I posted another post in the support forum about my right hand. It is worsesning, and the atrophy. Before I didn't think I had atrophy in the thenar eminence since I did not have any dents, but it is has gotten much smaller in general.

Other symptoms I've been having - coming and going/not all the time (before my med switch):
Night sweats
swollen underams - one night my left underarm and front of my neck hurt a lot
heart beats and more constant twitching now in my RIGHT arm
pains in my calves and under my feet - come and go within seconds

I have an app where I track symptoms, and my list keeps getting longer and longer! :!: :?: :?: :?:

I've been doing the infusions and acupuncture, 4 sessions so far with pause this week since my doctor is on vacation. I can't tell any difference with the infusions. I did feel an overall improvement with my left arm (less pain, less twitching, less pressure/tension) from the acupuncture, but weakness and shakiness is still the same.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 27th, 2015, 10:27 am

Xina535 wrote:
I have not been well mentally lately. I have been at the hospital psycho dept recenlty twice to discuss my mental situation. They want to get my meds changed, started Cymbalta and Seroquil (spelling?) and I go back on 2-June for another appt. They have indicated that I may need to stay there for awhile. The doctors are calling my other doctors to get more of my history...I am going to e-mail them all of my neuro evaluations, since in two from one doctor, he diagnosed me with depression and psychosomatic, and the other neuro said I was normal/mentally stable.


I got a call from the psychologist at the hospital today. I had sent him an e-mail with attached reports from the other neuros and my frustration etc, my side effects of the meds (explosion of twitches) and also how no one knows what is wrong with my hand (see my other thread). He said that he spoke to who he considers the best psychologist in Germany personally for me to get me a room in the hospital to stay for, he believes 5-10 days, at least to get me tested for different things (including neuro things). He doesn't know yet when I can check in, but can tell me more when I see him next week for my follow-up. This is a once in a lifetime opportunity to get in Germany! The hospital is full, but he made arrangements for me! He said for the twitching, to continue taking the 60mg of Cymbalta (which is probably what is causing this twitching explosion - see my other thread) but if it is too much to take, then to go back down to 30mg. I will see how I feel tonight when I go to bed. I have been twitching like crazy all day.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 2nd, 2015, 1:29 pm

It's been awhile....I've been better mentally, I owe it all to Cymbalta and partly to Seroquel. It has worked wonders on my anxiety, panic, depression, sleep problem. They have given me a terrible constipation problem, so I am battling that with different drinks, teas, etc. Up until the last week, I totally forgot about all of my fears and symptoms. I've been cooking more, going out more, enjoying and laughing more. I've noticed that I'm eating and sleeping better, and losing less hair. The terrible thoughts I had went away.

About the hospital. They called and told me they had a bed and to come in and check in. I lugged two big bags with me on a bus and train, got to the check in center, all hopeful and scared, but feeling ready....and long story short, they denied me and sent me back home. All because I am not a resident of the city they are in (Düsseldorf). I live in a bordering city. And due to the demand within their own city, they turned me away. They had plenty of opportunity (about a month worth of appointments and calling every day to see if a bed was available), to tell me this, but did not. So the doctor who had been prescribing me the meds and seeing me, had to apologize to me up and down and send me home. I was to call the psyche hospital in my city and see about staying there. The BIG difference is that the one in my city is not multi-disciplinary, meaning, they are ONLY a psycho hospital and have no neurology department. The program at the Düsseldorf hospital would have included full neuro work-ups. I have yet to call the hospital in my city. I lost a HUGE amount of trust. I was pained in many ways when they turned me away....for a long time.

So, because I had been feeling better, I decided to go back to the gym and do light exercises. I've been 3 times now over the last two weeks, my hubby has come with me for moral support. And now, since this last week, my worries and fears are coming back.

My entire body, just from 3 times of light exercises, is constantly twitching. All day, all over. I'm having more of these myoclonic jerks, where a limb will just whip out, like a big limb twitch. At least 3 times within 5 minutes. My left arm is still not right. I did have a neuro appt with a brand new neuro on my left arm recently, deltoid, where I had an abnormal EMG before, and the EMG was normal this time. But I still get pain all within the deltoid, often. The Cymbalta should help it, and it does I think a little, but not entirely. My left leg problem has come back, since doing the light exercises on the REHAB machines, not even the weight machines.

Now - I smoked marijuana last night. Afterwards, I just laid there, totally still, and meditated on my body. This may sound strange, but I could literally mark up/draw up the left leg nerve that is bothering me, from the lower back down to my foot. It goes over my butt, then to the outside of my left thigh, then the side of my calf, then crosses over to go under my foot. This one nerve pathway felt like it was LIT UP , like it was the only nerve pathway I could really feel. It felt full of energy like as if it was about to do a big jolt, but it didn't...it felt restless. Then I felt the same thing later in my left arm (deltoid). And while I was laying there, paying attention to what was going on, I had several myclonic jerks. Also, over the last month, I started getting the feeling of hot water being poured down my calf. I thought at first that I peed on myself. I thought it would go away, but it's still here.

So now I am back to realizing and fearing my symptoms. I know something is happening, something is not normal. What is it? Why do I have this neuropathy and nerve "hyperexcitability" with the twitching and jerking? Especially since I've been anxiety free and happy actually, for a while now?

I posted something about hyperexcitability in the General forum, an article that was published. Also, July was my 2 year mark since twitching.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 2nd, 2015, 1:37 pm

Oh, I wanted also to post that I was diagnosed with:

major depression - duh
panic disorder - duh
GAD - duh
borderline personality disorder - this one is new :(
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on August 2nd, 2015, 7:30 pm

All I'm very familiar with what you are diagnosed. I am seeking treatment for some of those issues and others. I am very careful about the medications though. Zoloft is what I'm on, reluctantly due to side-effects and twitching.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Yuliasir on August 3rd, 2015, 11:18 am

So it is quite normal that you felt your inflammed nerves, it just reflect the situation you are in.
'Hot water pouring' is the same sensory issue we all have - goosebump, cold water, bugs crawling, hot patches, hair feeling on the tongue - all the same, well within your mood disorder diagnosis too by the way.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 4th, 2015, 5:25 am

misterjuanperalta wrote:All I'm very familiar with what you are diagnosed. I am seeking treatment for some of those issues and others. I am very careful about the medications though. Zoloft is what I'm on, reluctantly due to side-effects and twitching.


Do you have the limb jerking too with the Zoloft? With my jerking, it has only recently increased, and I've related it to after I started exercising recently. I've been taking Cymbalta (the generic Duloxetine) 60mg since about 2 months, so I am wondering why the twitching and jerking has increased only recently.

I read this:

http://www.healthboards.com/boards/depr ... e-you.html

http://doublecheckmd.com/EffectsDetail. ... 9&eid=2487

http://www.depressionforums.org/forums/ ... -twitches/ <----particularly the last post by maintainin/Brian


Periodic Limb Disorder huh? My husband notices this happening to me and is also weirded out by how many I have.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 4th, 2015, 5:28 am

Yuliasir wrote:So it is quite normal that you felt your inflammed nerves, it just reflect the situation you are in.
'Hot water pouring' is the same sensory issue we all have - goosebump, cold water, bugs crawling, hot patches, hair feeling on the tongue - all the same, well within your mood disorder diagnosis too by the way.


Thank you. I am going back to physiotherapy today to try to tame this leg situation before it gets out of hand again. Also to treat my neck herniations, I still have neck pain and a very limited range of motion with moving my head. The hot water feeling on my legs still catches me from time to time, thinking I spilled something or something splashed on me.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Yuliasir on August 4th, 2015, 7:11 am

yep it is just a sensory system playing games... very strange feeling, indeed. Same as bugs or constant goosebumps here therer everywhere brrrr!
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 10th, 2015, 3:38 am

Question - going back to my left shoulder:

It is feeling pretty weak and floppy again. Quick re-cap: In December, I felt a lot of pain go down my plexus/neck area and into my arm, and ever since then it's been weak. I had an abnormal EMG of the deltoid, clinical weakness and cortisone helped bring the clinical strength back, although it still does not feel right. I've had constant pain in my arm since, sometimes bad, sometimes not. All doctors agreed that the 2 herniated discs are not related. No one really knows exactly what happened, or what is happening. When I took Flexeril two nights ago, it helped my neck pain and also my arm pain at the same time. This, plus how the onset started in December, tells my gut that they are related, despite what the doctors say. I had an EMG of the deltoid again in June and it was normal, per the neurologist. I have not had an EMG of any other part of my arm or neck, nor an image of my shoulder.

If this was happening to you, what would you do next? Would you get an EMG of other muscles? Would you ask for an imaging of the shoulder? Would you keep taking pills, or would you do something else? I am confused as to where I should go or what I should do now. I am going back to physiotherapy, and I am going to call my orthopedic doctor to maybe get acupunture, as starting points.

Last question - if this were ALS, my arm would be significantly worse by now right? Since Dec? I would not have had the strength come back with cortisone and by now my arm/shoulder would highly likely be way worse by now, right?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on August 10th, 2015, 4:03 am

I'd request an EMG of all suspected or symptomatic muscles. If it were ALS, EMG would continue to be abnormal and/or worse. Progression of ALS is not predictable. For some, progression is very slow. For others, it is very fast.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Yuliasir on August 10th, 2015, 4:27 am

well, the fact that flexeril helps you with the pain etc. definitely shifts me to the idea of tension pain. As soon as your muscles were flexed by the drug, you also lost your pain.

Disks are not the only structures able to compress nerves. Muscles itself can do that perfectly if tensed. What is the source of constant muscle tension - it is another story. but the fact than in 6 month no significant deterioration except the pain was observed again says in favour of postural issue and related compression or stress related tension and compression. There is no way to see if your muscles are compressing nerves - muscles are soft tissues and they could not be visualised as precisely as more hard tissues and therefore it is hard to say if they compress your nerves or not. But if you have pain going down under relaxant, I think, the simple logic may drive us to the answer YES, your muscles cause that.

I would probably ask for EMG of neck muscles and other non-tested muscles where the pain is (just to see how much they are damaged if any neuromuscular damage exists), and probably I would looking for the source of tension and ways to relieve it. So physio, gymnastics, postural alertness etc - all those things should be helpful.

You must remember that ANY factor leading to constant pain may also result in atrophy (however less than in case of definite denervation, at which the nerve is dead). So it could be diskopathy, compression caused by other soft tissues, scars etc. Pain means less movement. less movement means atrophy. That's simple.

So - pain management, excercises, mood disoerde corrective therapy - all things whihc could relieve your hysical and spiritual tension - should help.
It all may start with a single myositis (considering december as a starting point, it is quite easy to catch along with the flu) - then an inflammed muscle become tensed, then tendinitis comes, causing constant uneven tension, then muscles compress your brachial nerve plexus and you get pain in your arm...

by the way the symptome with the fingers which can not get apart is pretty typical for hand tendinitis nd compression syndromes, as far as I remember. So again nothing beyond mechanical damages from repretitive strains.

I have seen a documentary about the baseball guy who strated Ice Bucket Challenge recently (my hubby watches sports tv all the time so I have to follow his favorite sports too). So I was really stunned with the fact HOW FAST is the grip of ALS. Here he has just moderate complains lowering his efficiency as a player. oops in few months he has a diagnosis. Oops on his wedding he barely could walk - few months later! Somwhere around two years after diagnosis he is completely motionless, a wheelchair person (and a happy dad).

So I am pretty sure in case of ALS people soon have no doubts at all and everybody could see the deterioration (especially the doctors). 6 months are long enough to say that your pattern is rather follows chronic compression, not neurodegeneration.
Why idea of neurodegenrative disease is so strong in us? Atrophy, paresis and other symptomes could be caused by mechanical cause as well, but we disregard that systematically, while mechanical damage is much more probable and much more often associated with the pain.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 10th, 2015, 4:50 am

I appreciate you both very much for your honest advice and input, and for even taking the time to respond.

I'd like to ask you both - do you still have worries of MND?

On another note- I will have 3 weeks vacation starting next week. The first two weeks will be at home, the last week will be in Ireland. In the two weeks before Ireland, I hope to get some sort of diagnostic tests done, and some more treatment besides physio, like maybe a chiropractor and/or acupunture.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Yuliasir on August 10th, 2015, 7:01 am

I do not have MND fears for about 2.5 years maybe. I still twitch, more or less, I have pains and spasms here there everywhere, I have reflux and voice troubles therefore, but I do not have MND fears.

I must say travelling may make things worse just beccause it is a stress. Just be warned.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on August 10th, 2015, 3:13 pm

Thanks for the heads up. I wrote about my physio and numbness in this thread:

viewtopic.php?f=4&t=21696
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Re: Worried about where this is going - 1 year 10 mo. update

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