Scared

[Guest]

I really need some help! My GP is useless (I am in the process of getting a second opinion). Sorry if this whole list reads like a novel but I need some objective answers from the real people that know and can point me in the direction I need to go, whether that be a neurologist (dr wont refer me) or a psychologist (I'm prepared to do/try anything).

I had a c-section in 2003 and after that I began to experience strange symtoms - widespread burning and tingling, numbness and cramps, could be anywhere on the face or limbs. I went to Dr thinking that maybe this was a side effect of the spinal anaesthesia I had during the c-section. Obstetric Dr referred me to a neurologist that did a Brain and neck MRI scan, said these were normal and continued to see me at regular intervals until 2005 when he discharged me saying I still had the symptoms but there was no progression or decline in any signs.

I had another baby mid 2005 and late 2005 the muscle twitching started, upper arms or thigh or back or lower leg, eye-lids or lip again widespread. Dizziness was bordering on the vertigo and kept me bed bound during the worse attacks. From then on I've been living with all of the pre-mentioned symptoms. Early 2010, I was having the sensations (burning tingling) everywhere. The fasiculations everywhere (not constant moreso at rest, night times are the worse) Cramping (mild) in my calves and upper arms. I tend to pull muscles very easily (at this present time my lower back). My muscles hurt when I lift things, I can lift things just hurts (my forearms especially). I find swallowing troublesome, again I can swallow but some types of food stick or I feel like its at the back of my nose and can cough it straight back out again (gross sorry). Tiredness is overwhelming, still tired after rest. Sometimes I wake up in the night and I feel like my legs and body are vibrating but husband says I'm not moving? But he has seen the other symptoms like the fasiculations.

During the whole of this my GP (family dr) has gone from the sublime to the ridiculous! I have had lots of bloodwork looking at general health, to more specifics like lupus and Rheumatoid Arthritis. He mentioned Chronic Fatigue and Fibromyalgia and that they can 'mimic the symptoms of ALs'? I said great, fine lets go down that route of care then, he said there is none! Anyway, I also suggested myself am I depressed? is that what is causing this? he said we could try some anti-depressants, specifically prozac as it will help with the re-uptake of serotonin, helpful in CFS and Fibro - nothing improved!

I feel helpless and Dr said no point in re-referring you to Neuro as he discharged you in the past!

I believe I have ALS, fully and totally - I confronted him with this and he laughed and said not even remotely possible! as you have no muscle atrophy or wasting.

What is it then? I know you guys are not Drs but if this story/picture sounds familiar and consistent with ALS then please reply and let me know and I can push, privately if needs be to see a Neuro. I am a mom to three children and I need to know.

Thank you if you bother to read this and remember how desperate you were to find the cause of your problems.

 

[Guest]

I'm wondering why you feel your GP is worthless, when it sounds like he has tested you for multiple things, all of which were plausible given your symptoms? The reason your GP reacted the way he did when you mentioned ALS is because your story and symptoms don't even remotely point in that direction. Maybe he shouldn't have laughed but I'm sure he didn't mean anything by it . . . or maybe he knew you went on the internet and self-diagnosed yourself with a disease there is absolutely no evidence you have and his laughter was a reflex because so many people do the same thing (go on the internet and self-diagnose themselves without a shred of medical knowledge) and it was laughter out of shear frustration.

If you're frustrated and not happy with the care you are getting, then go to another physician. It's as simple as that. Oh, and stay off of the internet because it isn't helping your situation . . . it's only making it worse, because it's obviously causing you a lot of anxiety. I wish you the best.

P.S. For what it's worth: it sounds autoimmune to me, stemming from the trauma you went through during your pregnancies and subsequent C-sections. Sometimes those things "autoimmune" are very elusive and are difficult to detect. Hang in there and be hopeful that your body will heal.

 

[Guest]

OMG, I feel like I just found my twin, LOL. Sorry its not funny what you are going through at all but you are so not alone. I had a baby by C-section back in 08, my life has not been the same since. Not long after the surgery I began to notice that I could never felt rested or got my normal energy level back. Docs kept telling me that it can take a year to feel normal and that I was most likely suffering from postpartum depression and anxiety. Roughly 7 months later I began having random pains, feelings of my arm and right hand feeling weak and not as coordinated. This would come and go. 6 months later, still having horrible fatigue, strange waves of panic, sleep starts, then buzzing when I would wake up, shaky feelings in my limbs, mostly legs, muscle twitching, startle very easy, stiff and painful calves (I still have this alot). All of this reads like someone with horrible anxiety, but that sure is not what it felt like. I went to several doctors, would show them how my limbs shook, would tell them about the joint pains, and would tell them about the tingling legs and numb feelings, and they eventually checked my reflexes and they were quite brisk and I even had clonus.

Finally I was sent to a neuro, tests were done, MRI's, bloodtests, EMG, nothing, nada. So here I am 2 yrs later and still asking well if its not this that or the other, what the hell is it?

The only place that I have really fit in with my symptoms has been the AboutBFS.com board. You may want to look into it if you havnt and see if you think any of there stories match up to yours. I think you may be surprised and your story and symptoms certainly match mine. Would be nice if we could chat sometime and maybe compare notes.

But I can assure you, this is not ALS and I'm quite sure others will be along soon to tell you the same. Thats what they told me anyway, the symptoms really dont match up like you think they do, trust me.


I'm here if you ever want to talk, take care

Robynn

 

[Guest]

Thank you for your prompt reply and to some extent a cool, calm you don't have it approach which is what I needed to hear from someone who KNOWS.

I agree, he did check the bloodwork, I guess I mean useless in the way that I still have the symptoms, and they are getting more frequent and severe (ie typing now hands are so stiff and clumsy, legs heavy and numb and eyelids drooping to near closure) but because the superficial tests don't suggest any idea as to what is wrong he doesn't pursue anything further than that. The same situation that lead to my friend aged 30 dying of breast cancer and another lady from our neighbourhood dying of bladder cancer when their 'bloodwork' was 'normal' and so therefore nothing could be wrong, same GP.

However, thank you for your reply.

 

[Guest]

Thanks Robyn Glad to know I am not alone in having these bizarre debilatating symptoms that no one can explain and that scare me stiff.

I'll definitely chat with you sometime, share notes and keep eachother sane

Thanks

 

[Guest]

Hey no problem at all. I've been there, and I'm still there on some level. And just so you know, my legs feel the exact same way that you described yours to feel, numbness, tingling, heaviness, clumsiness (clumsy feeling in my arms and hands as well) but all of this has been my world for well over a year or more now, and no doctor has found a thing and they just started looking at me like I was making it all up so I just stopped going.


I will leave you a visitor message on your profile page and leave my email for you so you have a way to contact me because I try really hard not to come on here much anymore.

Please take care and chin up, I think I can help you get to feeling better and less worried.

Talk soon


Robynn:-D

 

[Guest]

Katy,

If your eyelids are droopy, i.e. there has been a definite change, then you do need to go back to a doctor and point this out. I know myasthenia gravis is usually the culprit, but there are most likely other causes as well.

MG can be difficult to diagnose. Single fiber emg, and a repetitive NCV. are accurate diagnostic methods. There are blood screens for antibodies, but, unfortunately, false negatives are common. You cannot rely on normal labwork to rule MG out. If the current suggestion that you have Fibromyalgia or Chronic Fatigue is correct, either of those conditions should be followed under the care of a rheumatologist. Your doctor was incorrect in telling you that there is nothing to be done to help with them. There are medications out there, especially for Fibro. Get to a rheumatologist. Try to get a referral to the best available, it makes quite a difference in this specialty.

Also, you should be screened for MS. Usual tests for this are mri and sometimes if there are more questions, a lumbar puncture.

Good luck!

 

[Guest]

Thank You Rose For suggesting some other avenues for me to pursue in my quest for finding out what is making me feel so rough and taking steps in conquering it or living with it!

Today legs totally cramping, calves and thighs, couldn't drive the car and my upper arms felt like I had been lifting weights all night and were very painful.

I'm also definitely going to see a Chiropractor to check my spine, last night in bed some horrific pains in arms, even going dead at times, could be spinal position or damage from the epidural anaesthesia I have had previously? Just another thing to get checked to rule out as a cause.

Thanks everyone for your input so far, it's really appreciated )

 

[Guest]

Katy,

I just typed you this long involved answer, and clicked on the wrong tab and it all disappeared, so here goes again!

Our healthcare system is so different than the UK, that I don't feel I can advise you about whether you should seek private care, but, I can say that a healthy mommy and wife is best, and, if it does not impact your family finances too much, you should consider going private if it will help you get answers. (talk about a run-on sentence!)

Epidural anesthesia does not go into the spinal cord, it goes into the space right next to it, but not into the sac. With spinal anesthesia, the needle does enter the spinal cord sac. I've actually had both types, had a total of three c-sections, and a few epidural treatments for back disc problems. With an epidural a person can still move, with a spinal there is paralysis. Because an epidural does not actually penetrate the sac and enter the spinal cord, it is really unlikely your previous epidurals caused the problems you're having now. If there had been damage (perhaps due to pressure on your spinal cord) back then, it would have shown up during the follow up testing you had, after your c-sections.

Also, as the anesthesia is inserted below the origin of nerves for arms, it could not have any effect on your arms now (as far as them going numb when you sleep) Almost everyone has this happen from time to time.

But, getting back to your drooping eyes. This should have been a big signal to your doctor to do more indepth screening for myasthenia gravis. There is an ocular type of the disease, as well as a type that has ocular as well as systemic involvement. and also a type that does not affect the eyes. This is a condition that while it is autoimmune, also has overlap with neurology. There are neurologists who specialize in just MG.

Now, your swallowing problems. Again, everyone has a random occurrence. due to a poorly timed swallow during conversation, etc. But, if it happens with any sort of regularity, and its not just a subjective feeling, but rather, you're coughing out food that should have been long gone, then it is something that should be looked into. So, the best specialty for that is an ENT doctor.

I honestly think you should work on being seen by both a rheumatologist as well as an ENT. Both of these types of doctors would recognize if there is a need to get you seen by neurology again as well.

There is a drug called tensilon, that, when given to someone with MG, will have an immdiate albeit temporary strengthening effect. Here are a couple of youtube videos that show this. This first one is really cute (it uses a golden retriever for its subject. The dog has myasthenia) The second video is an indepth look at ocular myasthenia, and I think it would be of help to you to compare with your own eyes as far as whether there is a similarity in what you are experiencing.

YouTube - Positive tensilon test

YouTube - myasthenia

good luck to you, keep working on getting answers and help.

 

[Guest]

Just a bit of an update - went to a different dr who has access to all my previous medical history and bloodwork/tests etc.

He doesn't think it's Myasthenia Gravis (due to amount of pain I am having in my muscles and joints)?

Thinks it 'could' be Fibromyalgia but seems the think there would be some inflammatory response evident in the Rheumatoid Screen he did (came back normal)? So a bit not sure!

I had to mention my probably to alot of you, irrational fear of ALS and he said the length of time I've had some if not all the syptoms doesn't really point to it and he thinks my age also goes against that diagnosis - however he did say the level of fasiculations I am having and the shaky legs after doing 10 squats in his office (lol thought I would need oxygen) was concerning and of how I was getting in my eyes 'worse', mainly painwise! but again he said again he really didn't think it was BUT will try me on a medication used for Fibro (some SSNRI anti depressant) and see the reaction to that, also started me on some Calcium/Magnesium/Vit D3 supplement (for the fasiculations). I've got to take these for 2 weeks then he will refer me to either a Neurologist or a Rheumatologist depending on the outcome!

So I feel a bit further ahead in finding an answer but a bit scared as to what it actually is :S Feeling very weak and tired today, spent most of the day in bed with the electric blanket on full pelt....

 

[Guest]

So if he doesn't think it's ALS then you should be happier than you sound. I hope you're not going to be one of those that doesn't believe the doctor.

AL.

 

[Guest]

Katy. I am so glad he does not think it is ALS, but I fully understand the frustration of not having an answer as yet. I hope all goes well for you during the diagnosed process. It's no fun, but just think about the positive things like not having ALS, it helps, believe me. We as humans always want answers and we want them right NOW! Medicine seldom works that way.

I wish you well and hope you will get better

Aly

 

[Guest]

Being in limbo can certainly be frustrating. Just stay positive and focus on the fact that your Dr's feel strongly that it is not ALS. Please keep us updated as to how you are doing!

 

[Guest]

Katy. Please disregard the ALS before the word Diagnosis. Computer glitch on this site. Happens heaps

 

[Guest]

Thanks everyone for all your support you all really are amazing I am just trying to think positive and just hope they can get to the bottom of what is making me feel so ill. In response to you Al I do whole heartedly want to believe my Dr but feel I cant totally accept it until further investigations have qualified his thoughts. Am racked with cramping tonight, back of thighs, hands, forearms plus the stinging sensations topped with the odd fasciculation. Dr gave me some literature on Fibro and also BFS with cramping and alot of it does sound very familiar.