Re: TM questions
Karen Luglio (tootsie(AT)voicenet.com)
Sun, 26 Jan 1997 00:52:51 -0500 (EST)
At 08:05 PM 1/25/97 -0500, you wrote:
> I just found this group a few days ago and have been encouraged to compare
>notes with others who have had this illness which I had never heard of til
>Sept. '95.
> I woke up Sept. 1 and was going about my normal routines when I noticed my
>left hand felt "funny", like I'd slept on it wrong. Then my feet started
>feeling funny -- don't even know how to describe it. Within a few hours I had
>numbness in my left hand and arm and both legs, on up to my abdomen, and
>couldn't walk without hanging on to my husband. At some point my left hand
>and arm felt a strong burning pain. There was slight swelling in my left hand
>and right calf. I had trouble going to the restroom without concentrating and
>relaxing, then felt I hadn't completely emptied my bladder when I did. For a
>week or two I was extremely tired, sleepy. fatigued very easily, broke out
>into a sweat just sitting up for very long, and felt somewhat nauseated, and
>though it helped to eat, my appetite was off. Went to the ER the first day;
>they ran EKG, CAT scan, loads of bloodwork, from Lyme disease to vitamin B 12
>deficiency and lots of others, and a mylogram (spelling?) and lumbar
>puncture. They probably would've run an MRI but it was Labor Day week-end and
>no one was in to run it.They did do that a few days later. I was told my
>spinal fluid was clear and there were no lesions on my brain. Thay didn't do
>the MRI on my spine: I don't know why not. I wish they had. I was told I had
>TM, primarily based on the tests that ruled out other things. I was put on
>steroids for 3 days by IV (don't know which ones) which seemed to greatly
>help the pain in my arm. Then I had three months of physical therapy at home,
>which helped immensely.
> Over time my strength and stamina improved and I was able to walk with a
>walker, then a cane, and now usually with no support at all though I'm still
>awkward. I can't run, jump, or hop (though, thankfully, I rarely need to!)
>Sometimes I can walk fine; other times my back hurts and I feel unstable.
>Sometimes I have more trouble standing still (like in choir or a line) than
>walking. Sometimes one knee or the other sometimes suddenly will "go out",
>but I haven't fallen yet. I still have numbness in my arm and legs, and
>occasionally my back. My arm and hand still hurt sometimes, sometimes
>burning, sometimes a squeezing pain. Sometimes the left side of my chest and
>lower back hurt. I still have occasional waves of nausea. My right leg
>doesn't feel cold or minor pain, like cuts from shaving. My left hand seems
>to have a delayed reaction to pain, like when I touch something hot while
>cooking.Muscle stiffness in all the affected areas is worse in cold weather.
>Sometimes my thigh or arm will "tremble" or twitch.
> I was intrigued to read of the urinary problems others had experienced.
>When I was in the hospital, one neurologist did have a nurse run a catheter
>after I had urinated to see if I was retaining urine. About half an IV bag
>was filled, but the drs. never addressed that, and I didn't think to ask when
>they were in my room. That has improved over time, but still happens
>occasionally. I too have to sometimes go to the bathroom every hour or so,
>though often I can wait longer. I saw a urologist about this and he couldn't
>find a problem. He thought it might be related to the TM, but I called the
>neurologist and he didn't think so. I was told to "give it some time."
>
> I have a few questions for anyone who might have info. or insight he or she
>could share:
> 1) The first week I was home (I spent one week in the hospital), I noticed
>an area in the middle of my back, between my shoulder blades, sometimes felt
>numb and sometimes hurt. I thought it was perhaps from lying around so much.
>That is the one thing that has gotten worse. It always hurts somewhat, but
>sometimes is very oppressive. Tylenol takes the edge off but doesn't totally
>relieve it. I don't know what to do about it.
> 2) Sometimes the numbness is much worse than others. It frightens me, I
>guess because I'm afraid of a recurrence or afraid this is something else
>besides TM (MS? stroke?) The neurologist said it was due to fatigue or
>irritability of the nerves. I asked if there was a way to un-irritate them or
>avoid irritating or fatiguing them; he said no. It still happens, sometimes
>just for seconds, sometimes for much longer. Sometimes my fingertips feel
>like they're filling with fluid. Overall the numbness has improved but is
>still there to some degree all the time, but sometimes these other areas - a
>couple of toes or an area in my thigh, or whatever will feel more numb for
>some length of time. Do others experience this?
> 3) After my third child was born in '93, I experienced numbness in two toes
>and in my right hand and arm. The neurologist didn't think that was related
>to this.It did go away over time. But some months ago I also began
>experiencing periodic numbness in my right hand and arm, which wasn't
>affected at all by the TM that started in '95. Any ideas why that is
>happening?
> 4) Just recently I had an experience which scared me a lot. Two days in a
>row I felt a really strange sensation in the back of my head, like a jolt or
>a pull or something. It is hard to even describe it because it was so fast.
>It didn't hurt. The second time it caused me to stumble, I think. My heart
>started racing both times; whether that was part of it or a reaction, I don't
>know. That week, my back had been really hurting and my shoulder and neck
>muscles were tight, so I thought perhaps it was a muscle spasm? I didn't call
>the dr. then but determined if it happened again I would. Sometimes since
>then I feel kind of a ripple or a pressure in the back of my head. I've had
>tension headaches since college, and this is different. Any ideas?
> 5) Last month I experienced some flashes of light in my left eye. I read
>that could mean retina trouble, so saw an opthamologist (spelling?). He said
>my retina was fine, but if it happened again, to call him. It did, about 20
>days later, along with some new floaters. I saw him again and he said my
>retina was still fine. I told him about the TM, but he didn't think it was
>related. But since then I've read of people with TM having eye problems. Have
>any of you experienced this? The flashes are only occasional, but the
>floaters are annoying. Sometimes there is pain behind the eye. It was a
>little blurry at the upper part of my vision when the flashes were going on,
>but that seems to be fine now.
> 6) Would a chiropractor help with any of this? I've been leery of them, but
>thought it might be worth a try if I found a good one.
> 7)Would being overweight affect anyof this?
>
> I realize I have a lot to be thankful for, and I try to focus on that. Yet
>sometimes I'm frightened because of these things continuing or flaring up or
>new things happening and discouraged, feeling all my nerves have gone wacky.
>Incidently, about 6 years ago I was diagnosed with low blood sugar (due to
>dizziness and shakiness which improves when I eat. Usually I'm fine but
>sometimes this flares up and seems to get better if I go off sugar and eat
>more protein and make an effort to get more sleep) and had half my thyroid
>gland removed due to a benign tumor. I have been on Synthroid ever since, and
>all my thyroid lab work has been fine since then, except for a thyroid
>peroxidase last year. I had never seen that on any previous thyroid blood
>work. Sometimes I wonder is some of these symptoms are related to blood sugar
>or thyroid, although they ran thyroid tests when I was in the hospital and
>that came out fine. Sometimes I also experience heart palpitations and
>nervousness and wonder if that is hormonal or panic or what. I'm on no other
>medication besides Synthroid and occasional Tylenol. I really dislike to take
>medicine.
>
> I apologize for the length of this, but I wanted to add one last thing. I
>am a Christian and I don't think I could've dealt with all of this without
>the Lord's help. In my regular daily Bible reading, quite often what I read
>for that day meets directly my needs for that day. All of this has made me
>more dependent on Him, seeking His help all throughout the day. Maybe that
>was one purpose for it. Although I don't understand it and pray often for
>healing, I know He allows nothing whimsically or purposelessly. Lamentations
>3:34 says, "For He doth not afflict willingly nor grieve the children of
>men." In John 17:3, Jesus said, "And this is eternal life, that they might
>know Thee the only true God, and Jesus Christ whom thou hast sent." Those who
>know Him can't lose: we have His help and grace every day here, and eternal
>life with Him to come.
> "But He was wounded for our trangressions, He was bruised for our
>iniquities: the chastisement of our peace was upon Him; and with His stripes
>we are healed.
> "All we like sheep have gone astray; we have turned every one to his own
>way; and the Lord hath laid on Him the iniquity of us all." Isaiah 53:5-6
>
> Thanks!
> Barbara
>
>
>
Dear Barbara:
It was interesting to read your story. I've experienced a lot of the same
sensations you describe. I get alternating numbness and pain at the base of
my neck close to where my lesion is.
As for you eye problems there is a form of TM that can affect the eyes. I would
definitely pursue that with your neurologist. Has anyone ever done an MRI
of your spine? If not I would insist on having it done. You don't know if
you still have any inflammation on your spine, or even scar tissue that is
causing some of your problems.
Let me know how you make out. Also, thank you for the beautiful passage.
Karen