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Some setbacks in my recovery:nerve problems, can anyone relate? Some setbacks in my recovery:nerve problems, can anyone relate?

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Unread 03-11-2003, 07:40 AM
Some setbacks in my recovery:nerve problems, can anyone relate?

Hi everyone,

I'm upset, because I'm experiencing some nerve problems and a weird array of symptoms. Wondering if anyone can relate or tell me what a neurologist would be likely to do...

I have had some minor shoulder/arm pain for some time, most likely due to computer use, but it has now gotten worse. I have regular episodes of pleasant tingling sensations down my neck into my back and shoulder. It is definitely related to certain positions of sitting and also lying on my stomach with head up and shoulders back. I've been back to see my internist, who says it's likely a nerve root problem, pinched nerve or disc thing, and to use ice/heat/rest--the usual. So I've been doing that, but it's not going away (of course, I'm not supposed to be using the computer so much, so it's my own fault).

However, there's another more troubling symptom that I had many years ago--double vision (vertical diplopia). I went through a period of having this when living abroad; I was having terrible allergic problems with my eyes at the time. Don't know if that's relevant, but I think I may have caused some minor eye trauma by rubbing (although when I mention this to doctors, they're dubious). I would notice that if I exercised vigorously in the early morning and started out very quickly, I would get double vision, sometimes persisting for about 15-20 minutes but then going away. I eventually learned to feel this coming on, to relax, and to control it by tilting my head down and looking up. (generally, this would indicate a problem with one of the cranial nerves, as I understand it.) Once I returned to the States, I got tested for worst-case scenario things like MS ( I had a brain scan) and myasthenia gravis; I also saw an opthalmologist. all seemed normal and as the episodes diminished and then stopped, I stopped worrying about it.

Well now that I'm back to exercising more again, I am experiencing a recurrence of this. Again, it's in the morning, if for instance I drop my kid off at school, go right to the gym, and work out vigorously. As always, I can control it and make the images realign, but sometimes I get a headache. It doesn't happen when I exercise in the afternoon or evening; it doesn't generally happen in any other situation. So my internist is stumped. She did say she could send me to a neurologist and have a whole lot of tests done, but she was skeptical that anything definitive would come out of it. If it is something really awful, like MS, I guess it will eventually manifest itself in other ways. Bizarrely enough, an optometrist I saw the other day asked whether it made a difference if I'd eaten anything before exercising; he was wondering about blood sugar==this was an interesting thought to me, since there is a diabetic neuropathy issue, but I'm not diabetic. However, I will try to see if it there's something about low blood sugar and vision.

So...I'm not sure what to do. I know this isn't related to my hysterectomy, only to my change in lifestyle since then. I think I will call my internist and say that I want a referral, but I'm frightened of starting down some long path and I know I don't want any tests in which dyes are injected (I'm afraid of allergic reactions).

anyone had anything like happen to them? any ideas?

thank you!
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Unread 03-11-2003, 07:43 AM
two other symptoms I forgot about!


Two other symptoms I wanted to share: tinnitus (it's like a chorus of cicadas in my head) and sometimes I wake up with a swollen eyelid. Now I think the latter symptom is an allergic reaction--I'm very sensitive to things, and sometimes if I paint a room, for instance, my eyes get irritated, and I'll wake up with one or both of them swollen. It responds to benedryl and goes away. But I'm wondering about thryoid and vision problems....any ideas?
Unread 03-11-2003, 08:19 AM
Some setbacks in my recovery:nerve problems, can anyone relate?

Are you keeping up with your blood pressure and pulse in relation to your symptoms. This may be a good idea if you can manage it. Do you have a history of mitral valve prolapse? Just a thought. My sister had vision problems and found out that she had mvp. She was having double vision and had even had some short periods of dizziness and blackouts. I hope that you find out something soon.
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Unread 03-11-2003, 08:57 AM
Some setbacks in my recovery:nerve problems, can anyone relate?

thank you Johnna, that's an interesting idea. I think I've been told I have a heart murmur, so I will ask my internist about this possibility. My blood pressure is very, very low; I used to have heart palpitations, but after surgery, they went away, so I think they were hormonal.

I will check into this possibility--thanks again for the suggestion.
Unread 03-11-2003, 09:02 AM
Some setbacks in my recovery:nerve problems, can anyone relate?


I'm sorry to hear about this! You've alluded recently to some puzzling symptoms, and now I see what you mean.

A couple of thoughts: the neck thing sounds TOTALLY like a disc, or discs -- sorry, but those symptoms are all too familiar to me -- I just wish I could class the sensations I get in my arm as "pleasant"

However, the eye thing is another story, and I suspect could be due to a couple of factors. One is the same dry eyes that some of us have complained of with menopause -- you may not realize that your tear production is down, but it likely is less than it used to be, and can certainly be aggravated by rubbing, which changes in the intra-ocular pressure. Another thought could be related to the heart, and an echocardiogram (come on out to California, I'll do it for you ) would define this better. There is a valve between the upper chambers of the heart, called a "patent foramen ovale" that is normally open in infancy; but up to 20% of all normal adults also have this valve open. Although it's not as likely a source of the visual problems, it should be looked for -- and, if they did need to use contrast, we use micro-bubbled saline to define it if needed.

I wish I had time to write more, but I'm late already for a presentation I'm giving (on the heart ) at my DD's elementary school. But I'll be baaaack...

Unread 03-11-2003, 11:14 AM
DDoouubbllee VViissiioonn

You may want to ask your eye doctor about opthalmic migraines. My friend has them and they seem to be brought on by the same types of things you describe.

The thyroid may play into this as well. One suggestion for you is to keep a symptom diary to take to your doctors. It may be useful to make notes at any dr. visits as well since you could then show them to other drs. you see.

Let us know if the road proves to be rocky or smooth as you go.
Unread 03-11-2003, 12:52 PM
Some setbacks in my recovery:nerve problems, can anyone relate?

Hi (((Clare))), sorry to hear you're having all of these symptoms! I have had a couple of them myself, for years now. The waking up with one eyelid swollen thing has bugged me about once a week for several years now. It seems to be always the side of my face that is down towards the pillow (I am a side sleeper). I just put a cold compress on it for a little while and lie on the other side, and it subsides, but while it's swollen I can have blurred vision in that eye.

And the tingling thing... I have had this in my left foot for about four years. When it first started I was referred to a neurologist, who took a very thorough history, asked some really interesting, probing questions (she really knows her stuff!) and ordered a lot of tests, including really, really complete metabolic panels. My blood was tested for EVERYTHING.

The conclusion she drew was that at some point I had injured the sheath on a nerve that runs down the leg into the foot, and it wasn't healing properly. She was trying to see if there was something lacking in my diet/supplement mix that might explain the inability to regrow the sheath, but she said I must be taking tons of great supplements (I am) because everything I needed to heal properly was there, and then some!

She asked a lot of questions about my activities, and ultimately hypothesized that I injured the nerve sitting on my feet for long periods of time doing Japanese tea ceremony (I have studied for about 8 years now) and that the way to get the nerve to heal is to stop doing that and give it a chance to rest. At that point, I refused, since Chado was the only thing in my life I was doing only for ME, and I found it very relaxing.

She also said I could have surgery, but that could cause more problems than it fixed so that unless I was in severe pain she recommended against going that route. So, I decided to just live with the weird sensations.

Well, because of my hyst and subsequent problems, I have not done tea for a year now, and just recently I have noticed some improvement in the foot. Since I'm now having another surgery and recovery in the near future, I expect I'll get even more of a chance for it to really heal properly!

So, JMHO, but I wouldn't hesitate to go ahead and get the referral and see what the neurologist has to say. My experience, at least, was a very positive one, and it was encouraging to see someone who, even though she does surgery, is not knife-happy but rather interested in finding the best solution in terms of quality of life for the patient. Maybe you will have an equally positive experience? I hope so!

Good luck, I hope you find out what's going on soon so you can get back to your active life!
Unread 03-11-2003, 03:12 PM
Some setbacks in my recovery:nerve problems, can anyone relate?

I'm sorry to hear about all the symptoms & pain I have a condition called postherpetic neuralgia, that was caused by Shingles, in my right arm, the pain is unreal I've had some success with Neurontin, am trying to increase the dose ( per my Dr ) to see if it will help even more....
My Neurologist has done MRI's, Nerve conductions & an EMG(sp) he is located within my Pain Mgmt Drs group. Here are a few links w/ some info on Nerve pain & damage that might hold some more insight for you:

How acupuncture heals nerve damage:

Neuropathy secondary to drugs is a condition in which there is a loss of sensation in a part of the body, associated with the use of a medication that can damage nerves.

EMG/Nerve Conduction Study:

What's a herniated disc, pinched nerve, bulging disc…?

Neurological Disorders:

Nerve damage after surgery:

Is nerve damage permanent?

Hypertension Treatment and Causes of High Blood Pressure:

Women are especially prone to early high blood pressure:

Good Luck ((Clare)), I hope you are able to find some anwers & relief to your problems soon... Pls keep us posted...((hugs))
Unread 03-11-2003, 05:40 PM
Some setbacks in my recovery:nerve problems, can anyone relate?

Thank you all for your advice and suggestions. I am very grateful and will keep all you've said in mind when I talk to my doctor next.

I think the neck tingling and shoulder pain were exacerbated by my Pilates workouts, possibly. I remember feeling some stiffness in my neck in some of the positions and movements, so I need to stop that or keep my neck still...what a drag...

I may also have more than one thing going on. I will definitely ask my doc about the possibility of some cardiac problem. If she nixes that idea, or perhaps in any case, I'll ask for a referral to a neurologist. I guess this is my year for getting every system checked out!

Linda, I also had numbness/tingling in the middle toes in my right foot--when I run. Turns out it is a neuroma--not yet at the point where I need surgery, but I'm supposed to wear loose shoes if I can. Weird...

muchas gracias amigas!


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