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Multiple Sclerosis Community
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Avatar universal

Someone pls give advice,

Hi, I'm new here, and I am searching for advice. Will try to keep from rambling. I have had symtoms for years, but at a young age (16) I had a dr continually tell me nothing was wrong with me leading to a very traumatic trip to the ER and my gall bladder removed. Needless to say as I got older, I was reluctant to talk to doctors.
At 26, in a new city I started to develop small symtoms that I wrote off with simple excuses. At 30 it was becoming too much and started to see my dr regularly with no avail, test after test all fine, again I had a dr telling me nothing wrong with me. Three DRs later,
Now I'm 34. And spiraling down hill. My first neurologist apt is today and how do I get him to take me seriously?
I have been to the ER a number of times and have been dismissed and sent home. Sometimes things feel a bit better. I am trying to keep an open mind and be positive, I do massage therapy as well as started using pure essential oils for calming/relaxation.

Symptoms
Clenching tight jaw/soar-always
Buzzing in ear-sometimes
Right eye blurs-sometimes
Headaches/pain behind eye.-often
Led shoulder blade/back pain, with numbness clenched muscles-always
Base of head/neck pain, difficulty moving neck-often
Something stuck in throat feeling/-often
Pain wraping from back to naval left side/-very often
Right buttocks numb with pain/staticy feeling-very often
Right leg thigh pain,front and back,-very often
Limp when walking due to right leg-very often
Leg weakness with use/shake after using stairs,always
Heavy legs/slow to respond, walking through water-always
Leg cramps/calves to toes-sometimes
Tingling/cold buzzing in feet and calves-often
Weak arms, left weaker then right, can't carry purse long, hold coffee or phone, hands cramp, muscles feel extremely tight/crampy.shake when leaning on elbow-always
Arms numb if raised ofer head.-always
Weird naval pain/like the belly button itself hurts-very often
Foot pain,sharp stepping on rocks-very often
Waking 2:3 times a night to pee-always

Extremely dizzy/ feint like if too hot
Motion sickness when my husband drives..(lol I know)
Poor balance/bump into walls/corners-often
Dizzy/sick spells when laying down-very often
Extreme extreme fatigue/walking zombie tired-always
Trouble thinking,slow processing, forget words-often

I don't know what else to say, my gp has ruled out most things like allergies and gluten, all blood work comeback good. There are so many things I can no longer manage, laundry, stairs, sitting on the floor with my son, bending over... Blow drying my hair is so much work, my arms get so tired just brushing my hair.
Can anyone give me some input?


22 Responses
Avatar universal
Hi there!

Good luck with your appointment today. Just give the neuro your list of symptoms and if you can the approximate time frame that they started.

It's great that you are doing thing to help yourself with the oils and massage therapy too.

Your symptoms are pretty wide-ranging so the neuro will likely do a neurological exam and order other blood tests and possibly an MRI and/or some evoked potential testing.

It could still be some time before they are able to narrow down a list of potential issues so hang tough.

Some of your symptoms could be found in MS but there is a ridiculous number of mimics as well.

Don't be afraid to ask questions, take notes or even have someone attend your appointment with you.

Please keep us posted,

Corrie
Avatar universal
I'm sorry to be an intrusion or bother  but I'm in sever need of an opinion I'm 17..........Has anyone experienced the sensation in  a way that you can feel your arms like vibrate/tremble? I swear it seems to move up and down my body and sometimes I can feel it in my head when I lay down at night. I have this feeling almost like my heart is beating in my stomach it'll just move like a rapid twitch but feels like my heartbeat.  I also get a prickly/tingling feeling in my hands and legs and I almost feel like my hand is weak or something. These syprs have happening  for a week followed by 2 weeks of waking up lightheaded, having eye problem, sleeping for long periods and still feeling tired and having that last all day. Lightheadedness has gone but now this is scaring me. I'm really terrified could anyone say if they experienced the same thing??? I've been tested for a thyroid problem, anemia, viruses, and a couple of other things everything came back normal. I'm just wondering if anyone thinks it may be a sign of MS my mom and her aunt both have it. Please someone help! I'm terrified I may have something terminable or even ALS..maybe I'm overthinking(I have bad anxiety) but I know my body and something wrong please someone anyone help I've been searching for answers and no one can seem to find any. All I find are old forums ...,,My dr doesn't know what to he won't call my house back......I know u guys aren't doctors but I can't find anyone willing to take time to try help me make sense of this
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667078 tn?1316004535
To 10limboland

Let the doctor do the exam first. Many neurologists will dismiss you if yoy burage him with comments or symptoms.

The Neuro exam will tell him a lot. That is reflexes and such. He will be able to determine if it is neurological.

Alex
667078 tn?1316004535
To Amanda
    The easiest thing you can do is get a GP to do a neurological exam. They can tell right then or there if it is neurological. Then they can send you to a neurologist. There are many MS mimics I would not jump to ALS. My doctor says when you hear hoof beats look for horses not zebras meaning look for the common causes first.

Alex
Avatar universal
So I saw the neurologist, not sure how I feel. He went over the notes and checked all the blood work and charts my dr did. I gave him my list of symtoms, and he asked me if I had been online. I said no. White lie I know but I don't what him thinking I'm making it up. He did his exam, which he didn't give me comments on, but some I couldn't do like hop on one leg. Then he told me he was ordering an MRI to check for MS. Honestly I hope it shows something so I can get an answer and treatment. If it shows nothing then I'm still in limbo. Not that I would ever want MS but I want an answer. An MRI here takes 8-12 weeks so we will wait and see
987762 tn?1331031553
COMMUNITY LEADER
Hi and welcome,

To be honest i'm very unsure if MS would be the most likely explanation, you've got an awful lot of symptoms listed which isn't always helpful, symptoms can be really tricky because they overlap so many other medical conditions, abnormal clinical signs are often more suggestive of causation.

When you had your neurological assessment, did he mention anything that might indicate a possible neurological causation? I know you said you couldn't hop on one leg but that's not particularly abnormal by it's self. Hmmmmm my mum can't hop and my kids and hubby loose balance doing the heel to toe, point being not being able to do balance tests it's necessarily neurologically abnormal :D

Suggestive clinically abnormal neurological signs are things like.......Babinski reflex, hyper-reflex, clonus, spasticity, Apraxia, essential tremor, nystagmus etc etc etc

I would highly recommend you do not avoid your mental health issues, by doing so you may be inadvertently drawing focus towards mental health. The big picture is important and shouldn't be avoided as part of anyone's overall  assessment, thats not meaning to say that it is a mental health issue at all, but i will always highly recommend having a full psychological assessment when ever that idea is on their list of possible causation.

Having a professional psychological evaluation will actually help towards being taken seriously if there isn't any basis to the idea, or help even if there is some mental health issue on it's own or in tandem with other medical conditions, so well worth doing imho!

Cheers...........JJ

  
987762 tn?1331031553
COMMUNITY LEADER
If you are also MandieA who is exactly the same age, same family history (mum & Aunt with MS) and almost the same symptoms, abnormally high anxiety levels etc........Please Please understand you are continually asking for help but you are totally ignoring any help that you are being offered!

The advice to see a doctor and to seek help for your anxiety, may not be what you really want to hear but IF you are now focusing on ALS then you seriously need to take control, stay off medical forums and seek professional help!

Good luck.........JJ    
Avatar universal
Nope but I met MandieA over weirdly sharing similar symptoms but with her she's told me her mother and aunt share MS while my mother and great aunt oddly share MS as well as my great grandfather Stew(he's young to be  GG) but he's been recently diagnosed but his neuro thinks he may have worse although I thought MS was easy to diagnose. I do share anxiety as she does and I'm frightened but I also take antidepressants and YES I DO SEE A THERAPIST. But my therapist was the one who suggested I try this website because Donna said I should try to ask for help before running to the neuro.and I is had to be a but more dramatic so I could get my point across..so to do be insulted when all I'm asking for is anyone has ever experienced similar symptoms or heard of anything I've had is outstanding ..this world is truly an awful place..I thought asking for help would help me find some people from what I was hoping all around the world would be able to say "Hey I've heard of this" or something.....I'm not even so much so asking for help from other patrons but hoping that a damn doctor will respond on a forum now is that too much to ask for? I think not.
5112396 tn?1378021583
MS is rarely an easy diagnosis because there isn't one simple test that rules it in or out. This is a patient forum, so there aren't any doctors here who would see your question.

I have to disagree with your therapist. Online forums are self-regulating. They are of highly variable quality and the quality of information can range from very helpful and factual to the downright dangerous. No therapist should be recommending someone go into a potential lions den in lieu of or before consulting an actual medical professional. No one really goes 'running to a neuro'. One consults a neurologist if one feels they may have a neurological issue.

It doesn't sound like you're dealing with MS or ALS, but again, we're not professionals.
987762 tn?1331031553
COMMUNITY LEADER
Please note i did say "If you are MandieA" kinda strange coincidence but stranger things have happened, sorry about wondering if you were someone else, my intent was not to insult you but to provide advice to someone (else) who posts in a very similar way to you!

As immisceo pointed out, this community like all medhelp communities now, doesn't have doctors answering questions, the community responses you'll get to your posts in this and any of the other communities you've posted in, will be from patients helping others if they decide to get involved and have something that may be helpful. There is a paid doctor service connected to medhelp, though i do not know how much they charge or the quality of the advice they provide....

As to your question, it doesn't really sound like what your experiencing is likely to be a neurological condition like MS, over and above any other possible medical explanation. The symptoms you mention are mostly non specific, so they are in general related to many different types of medical issues and not in my humble opinion suggestive of a neurological condition like MS. Also MS doesn't typically progress as you have described (over a 2-3 week period), MS is more of a slow disease that progresses over time, what you have described would seem more systemic.

Tremors can be caused by lots of things, psychological is possibly more common than neurological caused tremors, more than half of people diagnosed with Essential tremor have a predisposition because of their genetics, if it presents in childhood its 7 times out of 10 a 'familial tremor' with other family members also dealing with it. I believe most other things that can cause tremors should of been picked up with the blood tests eg viral, hormonal etc  

It might be a generational thing to not introduce your self to a community your asking help from, but regardless of how or why you found us, it might be helpful to keep in mind that adult orientated medical communities like ours, are generally respectful environments by choice......  

It was very misguided advice by your therapist to suggest someone of your age, who's currently dealing with anxiety about their health, to go on line for help instead of seeing a medically train professional. It's also not advisable to purposely be "more dramatic so I could get my point across", truthfully that's the exact opposite of what works because by being dramatic your actually drawing more attention to your anxiety than anything else. It might be more helpful for you to consider starting over.....

Hope that helps!

Cheers..........JJ

btw if you choose to start over, could you please brake up your posts like we have done, people with MS often have visual issues that makes reading large blocks of text rather difficult (ta)
Avatar universal
Just want to ad, that I have been seeing my family dr for 3 years regarding symptoms, the way our system works we need referrals to specialists. I have seen an OBGYM as well as a GI and both can not find anything, and both have performed surgeries. (Colonoscopy, laproscopy ect) when things got worse she said, worried about ms.
I also want to say that I am in an awesome place in my life besides my health, my husband and I have a great marriage, the hardest part of our marriage is over, when he broke his back one month to the day we got married. We have a beautiful son, perfectly healthy, which drs told us he wouldn't be, and in August we were finally able to sell our tiny home in a bad area and get a new home and have renovated it. I have a great job and so much in life to be thankful for, I am where I want to be, just my health is not letting me enjoy it. I am a realist and have very very good mental health.
I don't care WHAT it is, I have been living and coping with IT for years. I just what to know its NAME. That way I can start a path to treatment.
It took two years to get to the neurologist, he did not give me any comments as to anything he thought besides ms. I had difficulty with the heal toe walk, my legs were shaking terribly. I was surprised I couldn't do these things. He also noticed I had trouble getting up from the table, but he did not enlighten me as to his thoughts.
after reading many many people's experiences online, I noticed so many similarities online. So many people with ms describe the exact same feelings, and yet there are so many symptoms I do not have. My scientific mind tells me that if two drs now think possible ms and I can relate to so many people then yes, it's a possibilitie.
I think I may have spasticity, others descriptions do match how I feel it, but that can be caused my MS as wel. It is an assumption right now but also a realistic probability.
9197017 tn?1429020416
Hi AmandaJeanA,
I also suggest that you start a new thread with your own question, so that you can get more visibility because your questions and 10ylimboland's questions aren't quite the same.
rpw
9197017 tn?1429020416
Hi AmandaJeanA,
When create a new thread with your question, I might have something to share. It's hard to tell just yet...I have a hard time reading long paragraphs---all the lines blend together.
Thanks...see you in a few...
Avatar universal
Just read about breaking up the paragraph, I appologize I did not really think of it when I was writing,
9197017 tn?1429020416
10, thanks!
rpw
Avatar universal
I'm sorry for being rude but I can't be sorry for expressing my frustration I actually came back from the doctor today. This is what's happening to me it's almost like a vibration but I feel it in whole body..my hands, head, and legs will have like a shaking/vibration/humming I'm not sure what to make of it....

I am getting an echocardiogram next month. I have been tested for mono, anemia, thyroid problems, blood cell count, diabetes, and nothing came back abnormal. When I lay down especially or just put my head against the back of a seat, I can feel my head like hum or vibrate. I have a fast heart beat but my dr told me 90 was normal on the EKG.

I initially went in for being lightheadedness and constant sleeping (and always feeling tired problem) thinking it was just a sickness and my dr noticed my heart beating fastly. My heart beats around 90-120 all day when I have my friend check my pulse a few times. Has anyone else ever experienced this? I don't mean to seem like a crazy person but my mind just goes to the 1st bad thought. I usually shake when I'm nervous but this is a constant 24/7 almost more intense kind if thing.

My therapist Donna was probably wrong to tell me I shouldn't be "running to the neuro" but I don't think she fully understands( she's a very ummm "let's do this session and get it over with kind of person") I'm going in for treatment now. I would like to update everyone after I get my echocardiogram.

I've only asked so many questions because I'm afraid but it realize that's not a good way to go about it and my dr said if I don't have a heart problem then he thinks I'm probably a young MS sufferer. (I myself don't have any clue how a heart problem and MS are supposed to similar) I'm sorry for lashing out my frustrations but you must understand that it's hard when no one around you seems to be of help.

My own friend actually sat down with this afternoon to exam me after my doctor did (they're RN's in training) and they told me what they belief to be wrong with is just the anxiety that bends to be treated better as I let them take my heartbeat and observe the trembling themselves.

Maybe I need a new therapist or a new dr or both. I don't know. My friend Bree told me to just start over by seeing a different because my friends had past experience working with Dr****** and said he is just too old to know what he is doing and diagnosing people wrong all the time. I would gladly go to a new therapist by I need suggestions as to whom or what kind of therapist I should see. My mother has disliked Donna for a long time but I guess I never saw it.

Alright I just simply want suggestions as to what my next steps should be as I take this scary journey to hopefully the right diagnosis and treatment.

PS----Dear Supermom, I actually had a discussion with MandieA over messenger thing today. She reached to me a few days ago and neither of us knew what to do about our symptoms so we just kept posting on old forums trying to get help.  I had a chance to Skype with her this afternoon and I've convinced her to fly out to LA so we can meet in person and take this journey together so neither of us have to be scared as we have extremely weird similar experiences but I'm not sure if she has the humming thing....anyway I just thought I'd tell you that as it seems you've shown concern for her well being but I would be tell if I wasn't on medication or getting what I first thought of Donna as "help"


11119474 tn?1428705770
You need to breathe.  Take things one baby step and one day at a time. The answers will come when you can bring your stress level down a notch.  I know that's hard, but it' the best thing that you can do for yourself right now.

Hugs,
~Linda
987762 tn?1331031553
COMMUNITY LEADER
What country are you from? I'm an Ozzie and we have a similar symptom to the UK and it often takes up to 3 months for an MRI for us down under and another 2-3 months for a follow up appt with the neuro to find out what if anything was found....

Often just because you have a partner, parent, children etc with some type of serious medical condition, will automatically bring a doctors focus on to your mental health long before physiological possibilities even get a look in, wrong yes but still it happen's far too often.

I'm a strong advocate of being proactive with regards to mental health and i would normally recommend someone in your situation, to consider getting their M/H assessed, so they can basically prove from the beginning that their M/H isn't what's causing their physical problems.

My brother who's an Aspie, just had his broken wrist and thumb overlooked for 5 weeks after a fall off his bike, apparently because he wasn't acting like he was in enough pain lol he's only broken the same arm 5 times now, you wonder sometimes how many medical certificates come out of corn flakes packets hmmmm.

If your neurologist is already talking about MS as a potential cause, it's probably not an issue you'll have but keep in mind that having a mental health assessment and or cognitive testing (at some stage) is becoming pretty standard during the MS diagnostic process, because M/H and cognitive issues are recognised MS issues, so it's not outside the norm if your neuro sets these types of tests for you anyway.  :D

I genuinely believe 'I don't care what it is, I just want to know it's name' is the mantra of every medical limbo lander across the world - YOU are so not alone, hang in there!

Hugs..........JJ
Avatar universal
I am in Canada, and have been dismissed by many doctors due to their rule of only treating one problem at a time, so they don't look at the whole picture. Thankfully the Dr I have now sent me to the neuro after two years of testing. Hopefully I'll get somewhere now.
11305938 tn?1418002133
I live in Canada as well. I am not sure what you mean when you say the doctors have a rule to treat one problem at a time?

Can you just explain because I am confused as too what you mean by that?
Avatar universal
Our doctors will only look at one symptom at a time and we have a 20 min rule, so when I go in with many things bothering me she will only talk about my weak leg. So it's never all put together that the symptoms are related.
Avatar universal
I want to add, I have been to a GI and an OBGYN had a laproscopy, colonoscopy, as well as endoscopy, I've had bone density scans and CT scans, unltra sounds, blood work and nothing can be found to explaine my symptoms.

After reading and researching in a scientific mind set, weighting and analyzing i do believe its MS. There isn't much else out there that has the degree of matching symtoms and feelings.
After reading forums and story's about people's battles and diagnosis, I'm pretty determined it's MS

I just hope my neuro is doing all the right tests.
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