I am writing to make my first attempt at reaching out for help, ideas, perspective, experience (anything anyone can offer). My brother had a complete C4 crush injury, skiing accident, 25 years ago at the age of 16. He has been so strong, so independent, so free of many health complications for all these years until about 2 years ago when his spasticity increased significantly leading to Baclifen treatment. Although the spasms seemed to be better controlled, little by little he has developed an array of symptoms that, frustratingly, have not been linked to anything any doctor can see as a physical/physiologic problem-ailment. Instead the final "diagnosis" is chalked up to anxiety/depression.
I believe that he probably does have some degree of depression and anxiety and I know this may be a huge part of what has made him feel worse in recent years but he keeps saying he feels his body is different. He says he feels increased weakness, a sense that he might fall out of his chair, he hears buzzing in his ears, feels tingling and "weird sensations" on the roof of his mouth/tongue especially whenever the condom is readjusted and/or during morning catheterization. He doesn't have a bladder infection, the urologist says his bladder is in good health. The physiatrist at Mount Sinai hospital in NYC told him everything looked normal and thinks it's probably depression. An MRI a year and half ago didn't show any syrinx (sp?). all his bloodwork has been normal. And yet still he feels an acutely heightened sense of inability to function alone, unsteadyness, tingling, buzzing, overall spaced-out and now also in the past several months increased pain in his neck and shoulder where he can feel it.
I was 6 years old when he was injured. I have been his close friend, companion, steadfast supporter...to see him deteriorate into such suffering with no answers after all these years is such torture. Does anyone have any thoughts on where to go from here? Thank you for being here.

Hi caring-sister
I'm not going to be much help but just popping in to say hi while we wait for others to contribute.

One consideration that comes to mind is that your brother is now in his 40s so his body obviously is aging and he's been sitting a long time with SCI, there may be some aging influences and/or posture problems. It may pay to have his usual sitting position checked out by a qualified person.

Depression is an easy answer and on the surface, too easy. I think you are right to be skeptical but also, in the end, it may be depression. If so, I'd think it was a reasonably healthy depression to do with the typical realisations of middle-age, such as realising the youth of his life is over and his dreams never came true...

I guess it could be any number of things.

I don't use Baclifen, but have heard of many of the symptoms you describe, as being side effects of that drug.

Subscribing to the KEEP IT SIMPLE system for solving most problems, I would look at what changes happened shortly before symptom onset.

The spasms and Baclifen of course, but anything else as well.

When psychological reasons for his depression are ruled out, there still remains pharmaceutical ones.

Sometimes, thinking " inside the box", is the better course.
ed

You are a dream come true. To hang in there all these years. I have spasms too. I'm trying a mix of meds. I'm constantly chasing spasms. It's tiring and I'm exhausted. Re: Anxiety that is a hard one for me. I can't get up and go run a mile like I used to. I try getting out each day. Sharing smiles with others. I go to convelesant homes and visit others. One friend cannot speak or move from the chin down. He uses a typing board to speak. When I leave him,I'm thankful for what does work.I also coach Basketball,and baseball for developmentally disabled children. I'm thankful I haven't been in a chair all my life.I adopted one of my special ed students who is Down Syndrome 7 years ago. I got injured 1-11-05 My husband of 29 years didn't except my injury. So I am now a single parent with a SCI and have a son to take care of Somedays I am so tired Your Friend Lisa

Hello Caring Sister,

Firstly, I am so sorry to read of your Brother's symptoms and even more disappointed to see drs and other professionals handing out labels of "depression" to cover all of his symptoms. Of course, it may be the case that he has some depression, a fact you openly state here, but to write everything off to that is in my opinion neglecting your bro's needs and rights.

A word about drug side effects...Usually, but not always, side effects are present for most of the treatment. However some people can and do develop them at a later date. Also, the neurological side effects of most drugs, aside from then ones which cause anaphylactic shock etc ( documented) are pretty vague and who is to say that they are not evidence of other ( perhaps subtle) eiteology in those effected.

Aside from the Baclofen side effects ( of which there are a few symptoms which can be attributed to it), a couple of thoughts spring to mind which could be at least contributing to your bro's situation.


I was always taught to respect and adopt the principles of Occam's Razor ( paraphrased):



Unfortunately, Some health professionals, get too taught up with the intricate and the technical, and in my opinion ( imo), fail to remember this, and may in fact 'miss' or underestimate something....

It may be a long shot, and could very well have been considered already, but I have seen people who have been very very unwell as the result of something which is considered to be a minor issue. Just out of interest, how does your brother react to medications such as Stemetil (prochlorperazine) etc? This drug ( and other phenothiazine's) 'work' on the Dopamine receptors in the Brain. Amongst other things, Stemetil et al can be prescribed for "Vertigo".
It would not be too difficult to mention this possible factor to his dr. They can initiate a trial of the medications and this might have an effect on his symptoms. Like I said above, I have Nursed people with Vertigo who have been very debilitated by it. I am mentioning it as it is the obvious, and often when drs are treating people like us, with Neurological issues and reduced mobility, they forget somehow that we can still be affected by the 'ordinary'.

Also, linked to the above is "inner ear disturbances". I would hope that the drs have looked at this too, but sometimes a build up of fluid in the inner ear, or maybe "just because" can lead to a type of "motion sickness" illness which also can debilitate. Both these issues can produce the tingling in the ears, nausea, weakness and feeling of falling etc. Again, its looking at the 'obvious' but sometimes those points are missed, or too readily discounted, imo.

The next thing which came to mind is POTS ( Postural Orthostatic Tachycardia Syndrome) Its little understood, even within the medical and neuro worlds. Basically, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up, or in the case of those who can not stand, with shifts in position. POTS can be so severe that minor changes in position can induce symptoms.

Although many state the main symptom of POTS is an excessive heart rate increment upon standing, or positional shift, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.

One of the factors of POTS is:

Pure Autonomic Failure (PAF)


Please see the following site: POTS Informations.

Of course, it may be that these factors have already been investigated, and if so, I am sorry to go over them again. Just some food for thought really. oh, also I presume that Chronic Fatigue Syndrome ( which can be very debilitating and despite its bad press, is to be taken seriously) It can produce the symptoms which you describe, and more and is usually based upon a physical trigger/illness.

I hope that your brother finds some answers soon. The sheer fact that he is up against a 'brick wall' must be having an impact on his depression.

Please do come back and let us know hoe he/you get on,

I hope this helps,


Take care,

K

Just 3 weeks ago I was feeling good. . . really, really good. I just nursed some 2nd degree foot sores back to health, just got past a UTI, and then started wheeling around the block again, and 1/4 mile jaunts to the nearest grocery store.

Then, It hit me like a ton of bricks! This really weird feeling of weakness, and a buzzing sensation through my body causing shaking sensations in the paralized areas of my body.

I went to the doctors, who took 7 different blood tests on mono, white blood cells, and all other things having to do with hypotension, with no positive results. Then I went back, after monitoring my heart rate for several days. Turns out that's on the lower end of normal. Next he did an EKG and said something could be construed as heart disease, so I'm now having an echocardiogram done this week.

I have a crazy feeling it's going to be negative as well. In fact, when I read this post, Caring Sister's 'brother' may have the same thing I do. Sounds a bit like Chronic Fatigue Syndrome, as Kewlcatz listed, but how can it be resolved? Why did it start? One day I was fine, the next I woke up weak, sometimes, shaky, and with no other symptoms!

By the way, I'm NOT depressed. Far from it. . . I'm really falling for my caregiver, we have a simple relationship (taking things slow) and I was totally healthy and ready to move ahead, until this occured. Now I'm absolutely flummoxed as to what this thing is. I'm hoping the caring sister is still around to say where her brother is in all this.

I had a c1 and c2. Ask him if it's ringing in the ears. out of my medical file i was complaning about ringing sounds. weakness & depression i don't know what depression is and weakness i don't know . I just don't want to do anything. my limbs hurt soon after i broke c1 and c2.

You guys should take an x ray of the place of you're injury, make sure you're spine is not shifting.