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So my new neurologist has done every test known to man on me in the last 4 weeks! This week I had EMG and nerve conduction on my lower body and my shoulders/arms. Surprisingly to me, I have bad neuropathy! The doctor is perplexed as to why both legs and both arms have severe neuropathy. He said he was shocked I was as active as I am.

He doesn't understand why my leg muscles are strong but yet the nerves are not. My arms have both muscle weakness and nerve damage. I felt like saying "Duh. I had a SAH!" :lol:

So my question to you all is this: How many also suffer from bad neuropathy? Did you have it before the SAH or only after?

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I had that test done many years ago and I passed it but before SAH like maybe 2008 I was tripping a lot and losing my grip which resulted in 3 black eyes one summer. I do have fibro for about 10 years and seemed to have problems in winter with Raynaud's with my feet turning almost translucent. I started Cymbalta for the fibro and it got much better. This was 2-3 years prior to the SAH and all that followed.

I am now also on similar medications at much higher doses, I also am on a channel blocker since SAH.

Good Luck, Sorry I wish I could help you more. Maryb

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I had severe neuropathy. It is not surprising because of the location of our SAH. All the motor neurons exit here.

I had the worst leg sensations like creepy crawly and weakness at the same time. It was over 2years before the awful sensations left me. I figured the descending pathways were still weak while the ascending were normal and so there was a miss match in the processing of the conflicting information.

Now, my legs feel normal about 75% of the time. I accredit my progress to yoga where you do slow movements instead of the aerobic quick movements. It gives more time for a well known phenomenon known as recruitment where the muscle fibers themselves 'recruit' other near by muscle fibers that may not be getting the signal directly from the brain. If you do fast movements, there is no time for this to take place.

My own personal theory (I am a neuroscientist that studied motor neurons) is that the recruitment allows the impoverished nerve fibers to get stimulation via another pathway and there by making it more likely that they can start to work again on their own without the 'recruitment' assistance later.

It makes no sense to me why your neuro people have 'no idea' why you have neuropathy. My digestion also slowed way down as well. Oh yea, and my thoughts too!

~Kris

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I was hoping you would reply Kris ! LOL I remembered you were a neuroscientist! My digestion is also screwed up and I have gained weight so fast in the last few months it is insane! I'm hoping my neurologist is being cautious before he says too much without all the data. The hospital in NYC still has not sent him my records. All he has is the initial radiology report that found the SAH. I like your explanation!

Once things settle down I'm going to find an assisted stretching/yoga/pilates thing to do. I have bad joint damage from a mystery autoimmune also so I have to start very slow since nothing bends too much anymore!

I go Thursday to see him now that he has completed all his tests to get the results. He gave me a cognitive test too so I can't wait to get all the results!

Edited by Tina
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Hey Kris,

I am 43yo male, about 13 months out and I have CONSTANT calf muscle fasciculations since my PNSAH. Never stop, but seem worse right when I awake or after I work-out. Sometimes goes up into my upper leg minimally. Does this mean I have neuropathy? My EMG was totally normal & I have seen 5 neurologists with no explanation, including Mayo clinic. Never had this before the SAH. I don't feel any weakness or pain in legs. However, I don't enjoy my workouts near as much because of a constant continual headache & just head discomfort as well. Other persisting symptoms are constant swimminess, constant tinnitus, occasional insomnia, off& on hot flashes & heat pains down my trunk & arms sometimes, occasional sound sensitivity, & micro-tremulousness (can't see it but I feel it). Just curious to your thoughts. Thanks, Wade

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Hendo24, if Kris does reply to this please be aware that she cannot give medical advice. Only a doctor can do this and none of us are medically qualified to do so.

My advice is to persist with your own doctor until you get a diagnosis if possible. Bizarre things sometimes do happen for which there is no medical explanation.

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Hendo ~ The emg and nerve conduction tests are pretty good indicators. I did not know I had neuropathy in both arms and both legs. My left leg bothered me before the SAH and then after the SAH I was just thankful to be alive so I didn't really care about the discomfort. The nerve conduction test, the one that is like a taser gun zapping you, shows the nerve signals. The EMG, the one with the needle in a muscle with an impulse, showed the muscles in my legs are strong despite the neuropathy. Perhaps go back to the doctor you are most comfortable with and ask for the nerve conduction if he didn't already do one.

No one here is a doctor who can tell you what's wrong. But as a group of people who have survived all manner of things after SAH, this group can provide peace of mind that you are not crazy! LOL I was literally told an hour ago by my neurologist they may never know how to fix me and if the neuropathy persists I can end up in a wheelchair someday. I was told to keep moving. Exercise as much as my body will allow.

I can tell you there are many odd things happening in my body since my brain exploded. Luckily, I now have a doctor who understands my frustration and fear and assures me many of these things do resolve eventually. It just is unknown how long it takes for each individual. I am only 9 months out. My brother had a double aneurysm over 10 years ago and occassionally still has some muscle tiredness after overdoing it.

I wish you well.

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The things we experience are so strange to us and often to our doctors as there is not much research on long term effects of SAH on any systems. Working with your doctor becomes a joint exploratory effort. You may or may not be able to get answers, but finding a doctor who will ask the questions with you is so nice.

I can only report what happened/is happening to me. I had varying pains...they felt like joint, muscle, or organs. I still get weird pains that appear out of nowhere for no reason, but they are fewer and less intense. Reactivating nerve fibers can really send out weird signals to the rest of the brain so it is sometimes so hard to know if you are experiencing lets say a muscle pain or a nerve pain as they will both hurt the same.

For me, I started tracking mine and realized that a pulled muscle has an arc to the healing pain which is 24-36hours after pull, the pain starts. Then it reaches a peak about 3days and then subsides gradually. My other pain comes on suddenly and can stay for different lengths of time and then go as fast as it came. I get pain on a 3 year old scar, for example, and it may last for 5 days. Or I may have terrible back pain when I wake, but after I use my back walking around for 30min, it goes completely away. When it is happening, I feel like I slipped a disk!

Part of my journey was realizing that my pains didn't necessarily mean that I was exercising too much or hurting myself. They just come and go on their own time. I can't control them with rest or with any other technique I've tried. My neurons have a mind of their own. I don't try and manage them and they no longer manage me either.

~Kris

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  • 2 weeks later...

Hi all I haven't been on here for a while. its 5 years on March 21st since sah and stroke and for the last 3 years I have suffered with a lot of pain in my unaffected side mainly in my hand, leg and feet.

Overtime it has worsened where I have pain, pins needles and numbness, great difficulty in walking and my right knee giving way. After many trips to the doctors with continueing worsening symptoms which have also started on my effected side I was sent for an MRI as GP suspected MS.

I had the scan and it came back with nothing new just old scarring from SAH. GP is now saying that I have neuropathy pain and that the stroke has caused nerve damage all over my body and this is why I am in so much pain. I have also suffered with constant fatigue for all this time. GP has put me on 20mg amitriptyline to start with.

I feel that I am more disabled than I was 3 years ago!! everything hurts I have pain with even the slightest thing and the tiredness is unreal!! has anybody else had all of this after SAH or stroke? I feel that I should be refered to neurologist, not just told this then left with meds!!

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Hi I am 12yrs in and was only given amitriptyline last year but still suffering with some pain and dizziness even now, however I was only given 10mg and told to up it to 30 if needed but as of yet I haven't I am thinking of trying something else xxx

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I do think our bodies are very intersting post SAH. I can walk and be very stumbly, yet run even run on trails and be very sure-footed. It's almost like how a stutterer can sing and not stutter. I find relief, massive relief, in fact, from a lot of my neurological symptoms from exercise if I can do it in a session that lasts a minimum of an hour. I tihnk part of it is muscle memory, part is definitly adrenilen and part is just the runners "high" that is so elusive to scientists. A runner is who I am. It is a big part of my identity.

I may pay for it afterwards, but I also pay for it after a weekend of going to the theater and going out. Does that mean I'm going to stop living? Heck no!

I haven't had neuropathy tests, but I wouldn't be surprised to find some there because I am stumbly and often have to balance myself. There are days I considering pulling out my cane, and I am always still looking at a path from point A to B to see what I can grab onto if I have to. On bad days I walk near a wall just in case. My coworkers know it's a bad day if I'm being a wall hugger.

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  • 2 weeks later...

Hey teech,

I get the runners high in just 5min of any type of exercise. Is your experience different than before SAH? I'm with you on feeling great as I move more. But then often I crash after a couple of days have gone by. So variable. It reminds me of getting sick when you have a scheduled vacation. How did the body know you were going to be taking it easy anyway, or had time to get sick? Now, I just get fatigued on a day off even if I just rested for the weekend! Strange.

~Kris

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Which part of my experience? I've always had the runner's high to some extent once running got easier. I just enjoy it. Because at one time I was very overweight and out of shape, running was something I never dreamed I'd be able to do so I have always found it very empowering. Once I hit that place where it no longer was super hard every time, I've always found something in every run to love about it.

I do think that now there are times it seems harder because of the headaches so starting out can seem a lot harder because it takes a bit to get warmed up and into the grove of things. Once I'm there, though, it is so amazing to feel like me again I just sometimes want to keep going and going and going and never want it to end.

I do crash harder after, though, but I don't care. I haven't actually thought too much about it because if I rest up I'm fine. My doctors don't think I need to worry about that; it's not doing any damage. She did say it might slow complete recovery to some extent, but that the payoff of having some normalcy right now along with the benefit of the healthy body is probably more important than a few extra months it'll take for recovery.

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With respect to the folks to talking about neuropathy, I was just diagnosed with Small Fiber Neuropathy and Peripharal Neuropathy. Neither of which I had before my SAH. The neurologoist is stumped. He said the most frequent explanation for the SFN is diabetitis but my blood work came back fine. It is has gotten so bad I can barely walk now.

I feel like something is happening in my body. My nervous system seems to be deterioating. Arms, hands, legs, etc. I'm on Neurontin and Vicodin for the pain (which I'm not even taking since I'd rather find the root cause than be drugged) and topamax to prevent the headaches (which it doesn't).

I can put up with the physcial problems but the cognitive loss is what I struggle most with….. my doctor wants me to go on Exelon patch to try to combat the loss and see if we can get some back. Not sure about that one.

Of course, running around with an autistic 5 year old doesn't really give me much time to rest. I'm sick once a week it seems now from a low immune system as well so I'm not getting a chance to recoup my strength.

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I am so sorry to hear this Susan. I know it is difficult especially with a child. They take quite a bit of energy. My neuro, which I do like, seems to think my headaches and random pains are from nerve damage and not from the SAH. Well, I have news for him, it is. Yeah, this SAH is for the birds.

I do hope you are feeling better soon.

Iola

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  • 2 weeks later...

Yes Susan, I do believe there is a direct correlation. I never had the wierdness I do now. Until they experience what we do its a bit of a guessing game for the doctors. My neurosurgeon in PA even told me they just do not know why some folks recover faster than others. The brain is a mystery to them as well.

Iola

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  • 2 weeks later...

Yes, this is why I stopped going to doctors about my SAH. I am a researcher by nature and I researched the heck out of the brain stem and wondered why they all think we should NOT be having pain, sensations, and weakness throughout our bodies. I just got tired of it all and just go my own way knowing that my pain/weakness IS from the SAH and there is nothing anyone can do about it. I just have to accept it and treat it topically because I can't treat the underlying cause...the bleed. It happened.

I still go to doctors about my general health, though. Since there was no follow-up for pmSAH like my other SAH fiends have with there yearly Angiograms. I figure it is OK for me. I'd of course go if any weird stroke symptoms other than my common everyday symptoms occurred. It was hard to finally figure out what those dailies were, though. Experience teaches.

~Kris

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  • 3 weeks later...

Almost a year to the anniversary of my PMSAH and I feel worse. You are right Chris. They don't think we should have wide spread pain. Even my new neurologist who had so much promise for getting to the bottom of things, he seemed interested, no longer shows interest.

The honeymoon period of a new doctor relationship is over. Yesterday he basically acted like I was wasting his time. He rattled off the list of known things wrong with me, small fiber neuropathy, sensory neuropathy, etc., and then said I needed surgery to my wrists, elbows and shoulders to release the nerves so it would stop causing pain. I asked him why he wouldn't just attribute this all to my SAH. And he looked at me dumbfounded and said it was not possible. Sorry dude, didn't have half this before so "something" had to cause it, I didn't just wake up one day with full body neuropathy, oh wait yes I did.... it's called a BRAIN HEMORRAGE! :roll:

He wrote me a prescription for more Firocet and some topamax and told me I need a PET scan of my brain to rule out early Alzheimers or other illness. Again, I had a brain hemorrhage, why don't these doctors think that could possibly be responsible for causing my cognitive impairments?! (rhetorical)

I give up. But I know I'm not taking any more medicine. My liver enzymes were very high. That has to be from all the pain meds and other they have been giving me! No one seems concerned about that either. Which cracks me up!!! They just keep writing prescriptions.

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  • 3 weeks later...

As far as the cognitive issues...

 

I noticed for me, that my memory was giving out like mad.  I thought this was strange since no known memory centers were connected with the location of pmSAH.  However it was surely happening.  As I healed, it got better and better.  I theorized myself that the brain can only take so much and then something has got to give.  I charted my cognitive capabilities partly by using one of those online neuro-game sights and partly with my own observations in a log book.  

 

If you have kids, I can't imagine how much that would hinder your progress because you'd still be pulled to tax your cognitive flexibility every hour of every day.  Juggling schedules, moods, actions, etc. of another while working on your self improvement.  Cognition will improve over time for all of us, it all depends on our lifestyle, age, general health, etc.  There is little we can do about it other than to let it naturally unfold and to be creative with adaptations along the way.  ie.  I always park to the right of the store so I can narrow my search if/when I forget where I park.  

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  • 3 months later...

This is one of the craziest parts of healthcare.  The doctor writes a prescription, but rarely reads anything about interactions and side effects.  Only the pharmacist knows if they have ALL your drug history and information.  They however, do not know about your underlying condition that caused the symptoms, so...  Who can you really talk to?  Who really knows?  I feel like I as the patient had to do all the research on my particular condition and then go to the doctor and ask them to venture together to find a treatment.  The doctor works for me.  If he has his own agenda, he's fired.  However, how many people can actually do this?  Most people aren't able to make sense out of research literature (which from my experience is 10years ahead of clinical) or they don't have the heart to get rid of their doctor.

 

Drugs to treat a symptom of unknown cause...then a drug to treat the side effects...then everything piles up and you become toxic to yourself.  ie, your liver is overworked.  This is why I don't take anything anymore unless the pain is bad and then just tylenol and meditation can bring it all to a tolerable (not necessarily likeable) level.  That's just me, though.

 

~Kris

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I agree about Dr's I am on amitriptyline and co-codamol then the dr prescribed tramadol you cannot take tramadol and codeine together also amitriptyline Dr's really should check xxx

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