Trying my luck here ...

[Eagle6205]

Hi everyone,

My names Steve Im relatively new to the Forums.

I'm posting here in the MS forums as it seems that I could be experiencing symptoms of MS.
I Originally posted a long post Primarily due to symptom listing. And Its been almost a month and not a single reply but my own. So here is a link if you want to read the Original post in which I explain my symptoms in detail with followup posts to update what the doctors say.

http://www.medhelp.org/posts/Neurology/Nuero-SurgeonNuerologist-Stumped-Pineal-Cyst/show/2172469#post_10375256

However. This one is not just about MS symptoms I have a pineal Gland Cyst in my head and I had many attacks before I actually had an MRI and found out about the cyst. Before anyone gives me the whole spill about how these don't cause symptoms, You may want to do some more research. I cant stand how when something is labeled rare everyone acts like that means never.  But although I say this..I'm not so certain it is the cyst. I never said it was to any of my doctors yet they are the ones who made the fuss. However through my own Long tedious research I discovered that there are surgeons who believe these cause a lot of the symptoms that come with MS however Not.

Up until March 15th I was fine. Then I began having attacks. The first 3 brought on all the symptoms of stroke but the sloping jaw or face. Now after a while a lot of the symptoms have chilled out. and a few remain however are very extreme.  Currently I have Severe Pain in one or both knees and legs and sometimes hips that on occasion after a severe days pain in which my legs LITERALLY feel as if they've been beaten with a baseball bat. They pain resides some and there is mild tingling and numbness as if god actually had mercy on me. So Now Im just back to ask people who have similar symptoms what their take is. I dont sleep much anymore and they wont diagnose me or give me any medicine for my pain. Hope yall can offer me some insight. Also why do you all usually see a GP instead of going to a neurologist first? Seems the GPs from what Ive read are more apt to help you then the Neuros,

[HVAC]

Be careful of that much Tylenol it is hard on the Liver. Regular pain Medication such sas narcotics do not work on neurological pain but Lyric, Trileptal, and Neurontin do. So do certain antidepressants.You need to find a doctor who knows about these medications. My Pain Doctor understands Neurological Pain I also did Butrans which is something new, it use to be used on drug addicts. It is a patch. You can't take narcotics with it.
A GP can write these scripts.

Alex

[Eagle6205]

Thanks you two. And my first thought was should I continue the same post? I kinda felt a new one was in order as well. So will do Lulu. Would you like me to repost this last update or perhaps wait till next time?

HVAC I havent had any luck with help for my pain. Every doctor I have been to thus far has said as a general rule they stopped writing pain meds. Ive just been coping with it. When it hurts too bad I lay down grit my teeth and pop an 800mg Tylenol and hope to fall asleep from exhaustion which I do alot. A few people have suggested to me Nurontin but no docs ever make mention of it. Im just hanging in there, I might try my primary care Dr and see if she will write something since I have a long bit of paperwork showing something is wrong which would back my pain statements.

[HVAC]

The only thing I would add is my Neurologist sent me to a pain clinic. That has been a huge help. I have had MS for over 40 years and pain is my biggest issue. I am on muscle relaxers for muscle contractions. They can also give you medication for nerve pain. You do not need a diagnosis to treat symptoms. I wish I had learned that earlier. The pain doctor did a simple Neurological exam and that is all he needed to know. He found that my brain does not shut off because of the MS so he helped me with my sleep as well.

Alex

[Lulu54]

keep looking for those answers and you might get one eventually.... It sounds like you get on ok with this neuro and the right tests are being run.

Would you do us the favor of starting a new discussion (thread) the next time you have an update?  Many people won't bother to read your latest news because they will feel like they have to read the epic tale that came earlier.  :-)

good luck and stay in touch.

[Eagle6205]

I saw my MS specialist again today. I had a lot of tests ran last time. They called me last week and said they were all within normal range. Though the results were supposed to be discussed with me at the Appt, their Computers were down.

She ordered another test  an Electromyography Nerve Conduction study on my left side since I have a marked Decrease in sensation on the left. When she poked me with a sharp wooden dowel It poked and stung on the right but felt like a dull tipped cotton ball on my left.

I am also having a follow up MRI on my brain to see if the Cyst/Tumor has grown though we don't know which it is.

She has ruled out a lot and made mention of a possible suspect, a Virus from the Indies which is Mimicking the symptoms of many Neurological Conditions. Only a few patients have emerged with it,though its cropping up in the mid west and many doctors due to the nature of it Dismiss their patients as Hypochondriacs after numerous tests come back clean.

I go back for a follow up in 6 weeks. At least I'm ruling things out and getting help to finding an answer.  :)  

In the meantime I'm staying positive,playing instruments and learning to live with this. Life Goes On. :)   Thanks to anyone who reads,

Respect to yall, And thank you so much for the Support.

[Eagle6205]

Well Penina Ive been asked the same question by a few people, however the Drs Ive seen never mention those. I would highly consider those though anything to stop this god awful pain in my legs and knees.  

I got a call today from the Drs on my test results. I dont have Lupus. I dont have Rheumatoid Arthritis. My kidneys and liver and such are within normal range, they ran a test to check some sort of chemical that has to do with heart muscle function which appeared normal. And thyroid and B-12 are good.

At first I was happy about it. But within a few seconds I thought well ...Great...whats next. How many doctors will it take?  All these tests all this money and time and not an answer to date, Not even a guess.  When all your tests are coming back normal they start to look at you as if your making this up.  Meanwhile the pain continues and you get nothing for it "/

They tell me to continue my logs but never bother to read them. They ask whats the most bothersome thing at this time...And Im like... You need to look at the history of the pains to better understand. If I just say my legs hurt and dont explain anything else,shes just gonna look at things that can make them hurt. I just don't know anymore what to do.

The good news is Im walking OK enough to not fall. I'm reading again though my Vocab is still bouncy and I struggle to find the intelligent way to say somethings, where it used to come natural.  And I called the School and asked them about picking  up where I left off in my studies, night instructor said it shouldn't be a problem and said I have plenty of time before they start that part again to get well and figure this out.So thats a plus! :)

Trying to stay positive. though I dont go out much anymore due to my legs Ive started picking up Guitar and Im doing errands from home for a website to keep busy.

Thanks for the replies

[PeninaD]

Rather than a "pain-killer" medication, would you consider a medication that dulls or blocks nerve pain, such as Neurontin, Lyrica, or Cymbalta?

[aspen2]

And the wait continues.  So sorry.  It's a frustrating journey, for sure.

Thanks for the update, Eagle.

[Eagle6205]

Update - I had my appointment today. I saw the MS Specialist I went to the website for the MS community Research Facilities and found the local chapter was Originally gonna see the man who made the facility here but he was out so I saw an afilliate who was as qualified. I trust her expertise and I believe she is trying to help. She told me she didnt  think it was stroke.Because it affected both sides ,she said also that shes seen many seminars on migraines and the types and all the conditions they can mimic however she told me its not migraines because they come and go where as my pains constant. She said she doesnt think its MS as MS is very specific to its traits but she would try to do any tests which havent been done to help come to a diagnosis. A Large thick stack of papers was given to me to take to the lab where each one was a test to be ran. So maybe ill find out something more soon. Shes also going to be focusing on my Muscles and is going to have some tests ran on them as well as Neuropathy tests. she also took my videos to view for further Research and Images on my discs were checked she said the MS Protocol was used.

The Good news is she doesn't think I have MS based on what Ive told her.
the bad news is Im still stuck with this condition and no diagnosis, or pain meds as she makes it a point not to write scripts for pain.   Wont know any of my test results till September. So ...   :/  

[Eagle6205]

Hey yall Im back after a while, and I have an Appt in 3 days to see the MS Specialist. I have been waiting A long time to see her. I don't expect much though to be honest. It seems that no one knows whats wrong and if they do know they just dont care enough to tell me.   My head burns like someones got a hot iron on the top of it about 5 times aday for a few minutes at a time. and this past week has been kinda bad for me. I was having less pain and walking almost normal then it flared up again or something and now Im walking like an old man hugging the wall, and grabbing furniture. With the constant muscle/bone pain feeling going into my hips alot now can barely bend my legs with pain in the knees and Quads and some in the shens and calfs. While Im sitting it feels like little scorpions on my knees stinging them all around the knee caps. Been in bed most of today and had to go back to bed yesterday for about an hour. popped a tylenol today hoping it will take off the edge.  Not sure about going back to school anymore. Insurance and Tag is out on my car and I hardly drive let alone ride in a car the pains so intense and gets Alot worse in cars every bump finds me murmuring profanity and biting my lip.

Anyway thats my update will post when I find out what this appt tells me on the 4th.  For those who have lived with this and other conditions similar for years, You must have Iron Will, Its been only months and I'm feeling nearly defeated though I try to press on like nothings wrong. HatzOff2U

[Eagle6205]

I just want to say to all of you thanks so Sincerely. For all your replies no matter the constructive Criticism or even the thought there are other things.
Ive been feeling very alone about all this and everyone around has kinda brushed me off their shoulder like sorry for ya it aint me life goes on. Ive missed alot of things with family i wanted to go to so bad but walking hurt and my legs would give on me ,So I stayed home.

I felt alone in all this till I hear your replies and know that I'm not alone and some of you have had all these symptoms for years. Big Hug to all of you really this has brought me to my knees and I feel as if talking with others and reading others stories on here have been a helping hand back to my feet saying I can do this.

Some problems that are popping up though my leg pain has subsided some just that occasion shoot of pain in the caps and that constant band feeling below my caps where they test your reflexes. Im having Balance problems I go to get up I stand and then its as if one side weighs more then the other like im top heavy or dizzy without the dizziness.

Also my left hand the original side of which had most complications and loss of weakness is now starting to just out of no where loose grip Im constantly dropping things. it'll be fine then boom no grip. And my head had a large pressure that covered the whole back right of my head as if someone had pushed me but from inside my head. 10 seconds later boom gone. I shocked me I stopped dead in my tracks coming down the hall.

Beckteria So far your one of few Ive seen talking about the words like that.
I have 3 videos Ive made 1 was of when it made me stutter terribly and I felt like Mike Tyson punched me in the face, I'm considering Uploading it as a private video on YT so that maybe you could tell me if that's how it goes for y'all when the stuttering strikes. Or maybe just upload the Audio file of the video and link you all to it for an Opinion. Anyways THANK YOU GUYS.

[zerodegrees]

Eagle,
I am not sure what the size of the cyst was. I just know it was a pineal gland cyst. She did not even know she had it. She developed stroke like symptoms and they found it when evaluating for that. Because it was causing such severe symptoms it was removed. It was benign.

I also know a few people with them that were found incidentally and they do not have any issues related to that (according to their doctors).

[RRlady]

Yes I had shingles- NOT a habit-former!
Get the shot!

[aspen2]

I'm very glad you got an appointment with an ms specialist!  Not too far away,either.  Even from that point it can be a long ride ... I've had three appointments with mine now (from August to June), and have a few more tests before the next follow-up.  It's definitely not straightforward.  Mine was concerned at first appointment, seemingly unconcerned at second appointment (I felt dismissed, however shouldn't have because he did book follow-up), and very concerned at my last appointment a few weeks ago.

So who knows?!?  Anyway, one step at a time and I'm glad you're being seen!

[Beckteria]

Hi Steve!  Sorry about my "question" about shingles on your post.  Didn't understand how this works. Sorry!   I have sat and read through most of the comments from you and replies from others!  Firstly, I agree with the responses that we are here to share our own expriences and are NOT professionals. I've had MS 28 yrs now and have experienced just about every "symptom" that you've mentioned + more!  However, as some have mentioned, my experience has been if i'm having leg pain, temp paralysis, etc. it is usually just on one side or the other.  Even the optic neuritis I've had was just tn left eye. Leg pain, spacticity, numbness...was just the one leg.  Usually my left as that was the 1 that was ever 1st affected.  I drag it from time to time.  However, re: tight band feeling..that I'll get around entire waist. I, too, am glad that you're seeing an MS specialist in Aug.  It is my opinion that's the best way to go and to achieve a possible clear Dx.  For what's it's worth, years ago I had 2 spinal taps done and both came back negative but MRI's did show lesions.  I also had a ton of other test done in the beginning, VER, SER, etc.  (visual evok. response,...)  After the whole barage of tests, which most were positive, clinical Dx was given for 2 yrs.  It was simply cll'd "Probable MS", but was Tx'd accordingly!  I too, did have a "neuro-psych" eval done which was fine with me as Insur. Co. required it.  It did not show anything with regard to my mental ability etc. Meaning..I too believe in 2nd Amend. but do not think that's the kind of eval they would do?!  Again, they were looking at my stress tolerance..anxiety level..blah..blah.. because, of course, a lot of us with MS suffer with depression, anxiety, stress etc. but science has yet to show whether that's a symptom of MS or we get stress & anxious because of the disease.  As for the "short term recall" as my Neuro calls it..they sent me for cognitive testing & therapy to "rule out" any serious cognitive  issues.  So, I'm fine with that!  I do have trouble alot tryting to type sometimes or just sit here thinking..ok..how do you spell the word which?  Can't look it up as can't remember ow to spell it!  Lol  Final determination was "I'm not crazy" it's just how my brain works.  I use alot of 'stick-ums" in my house * they're plastred all over kitchen cupboards!  Hope this helped alittle.  Looking forward to your eval in August!  Keep Smiling!

[Beckteria]

Does anyone out there with MS have Shingles or ever had shingles???

[Eagle6205]

Well I now see the MS Specialist August 4th. I have been reading many many stories about people who have my symptoms and I think I would be stupid not to tell my MS specialist everyone of my symptoms. I see its very common for famous institutes of large hospitals to tell you that you should see a shrink and that often these people are later diagnosed with MS. Ys Zerodegrees I truly have high suspicion of that cyst as does my whole family. I know of a Dr in TX that does the removal and I will be contacting him if I am told yet again they dont know the cause of my symptoms.

Its trainwrecked my life. Ive missed so much of this block of powerplant I will not get my certification to wrok on aircraft engines now. I hope to enrolled to take Airframe soon. But if I dont get this fixed I'll be doomed to sit at home and stay with mom. Im not that kind of a guy. I wont stop in my tracks over illness, ive oversome 3 hernia surgeries and a few other medical conditions and I have not stopped. Slowed down alot yes.

How much does something like that cost though,to remove or drain the cyst and was that cyst a pineal Cyst? What was its size do you know? They take the size into consideration alot. Ive learned this cysts removal is one of the hardest Brain surgeries there are out there to perform.

Anyways thanks for the Reply.

[kwarendorf]

Let us know what the MS doc says,

Kyle

[zerodegrees]

I hope you will continue to pursue your symptoms and find an answer.

Regarding your cyst, I agree that these can cause some serious problems. I have a family member who had stroke like symptoms (difficulty walking, slurred speech, etc.). She did have her cyst removed and symptoms resolved, although her balance never completely returned.

Remember that what you read in these forums are just regular people. They are patients also. What is "normal" for them with MS, may not be normal for the next person. They are not doctors and although they are giving advise, it is based on their experiences and not scientific medical advice. They are comparing your symptoms to their symptoms and those of people they know. No one here can diagnose they can only advise you. You know your body better than anyone.

I hope you get some answers soon.

[Eagle6205]

Hi and thanks for reading it is indeed a gauntlet to read I'm sure but at the time of me writing that I was in such a twist and turn and great frustration I had no idea what I should and should not say. Im a very Honest man and believe it or not those are all my symptoms. Some days I get 5 of the list others 20.

Lately this past week besides the pain in my legs and aging numb and strange feeling like a band wrapped below my kneecaps when not in severe pain I can walk!  :)   I even sucked it up and grit my teeth to make the Airshow this weekend. I had no idea I would be doing that much walking and standing however and I was in alot of pain by the end of it I just wanted to go home didnt even stay for autographs which I did want.

I called this morning about that referral and have not heard back yet. Uni never called me back so Ive opted for a Specialist in a sort of nip it in the bud approach.

Currently My symptoms are pain in my legs and knees some Arm pain on the right arm mostly and some stuttering still , not all the time.  Any more then a few sentences and I'm saying the same word over and over again at the beginning of my statements middle and toward the end, about 4 times a word.

I'm having memory troubles too cant remember names of people I know.  Have trouble finding the most basic of words as well at times and I mis spell a lot, primarily because Ive forgotten how to spell some words.  Ive been using auto correct lol.

My Hand writing is great. Ive had a tremor in my right hand for some years now so I dont know that really is a symptom I believe its chemically related however. I was exposed to a chemical banned by the EPA to remove Grease and Oils from Wire rope known as Trichlorethylene.
But this work I did was in 2009 so I don't know.

Ive Facial pain on the left side and strange headaches  that come and go.
I do still have attacks but a lot less ,when they strike I just sit in a chair till they pass. My speech goes bad not everytime though. my arms go limp coordination goes out the window cant even put a scoop of sugar in my coffee I cant hold the spoon right. I get stuck in a kind of thought. and the pressure on the right forehead comes when this occurs.

My arms are almost useless and I have spasticity in my legs. tightness in my neck some. Within about an hour im fine it slowly subsides. some pain behind my eye still on the right. But Im managing ,My biggest problem is just my legs and the attacks which are not seizures. followed by extreme fatigue,though its not extreme everytime. I cant sleep enough when it is extreme.  

Anyways I will take your advice  You never know these days with meds.  But that's my update. Also I know you are not drs here. just wanted to make mention but on the neurology forum I thought there were Neurologists however. But that's my update.

I just got the call back I'm indeed being referred to an MS specialist
Yippee!

[kwarendorf]

Hi Eagle -

It sure seems you have a lot on your plate. I've read your posts here and on the Neurology forum. Some of what you describe could be caused by MS. Other things you mention are lees likely to be caused by MS. Having MS does not mean you can't have something additional going on.

If you want to rule MS in or out, you need to see a neurologist that specializes in the diagnosing and treatment of MS. MS is a clinical diagnoisis that is supported by tests and imaging studies. It is possible to have MS and not have lesions show on MRI or Oligclonal bands appear in your cerebrospinal fluid. To get a diagnosis without the usual findings a trained MS specialist is needed.

I understand that you are suffering and want to know what is going on. I did too. I would start from scratch with an MS neurologist. My advice is to find an MS specialist. I understand that you have compiled an extensive symptom log and have videos of your symptoms. I would bring them with me but I would not present them unless asked. I would focus on the top 3-4 things that effect your quqlity of life. If you try and present the whole list you risk losing the doc's attention. They're only human after all.

As a general matter, we are an MS forum. We are not doctors. We're people who either have MS or think they moght have MS. The information presented here is based on out personal experience with the disease. We are not in a position to discuss things like pineal cysts or other neurological diseases.

Try and keep an open mind about doctors and phamaceutical companies. I don't believe that they are out to get us. Drug comapnies are in business to make money. They make more money by curing people of things than the do poisining them :-)

Kyle

[Eagle6205]

I do have a strong bias against medication yes. I don't like to take medicine I never have. I have to be in severe pain,or high fever to even fathom a Tylenol. I try to let my own body work off illness.  However this condition is different Tylenol doesn't even phase my pain. So I have resorted to taking narcotic pain meds, only in moderation though.

I don't like the idea of seeing a shrink, Supermum I'm sorry I just don't trust them. There are any number of everyday normal life things that an every day person does that they see as something which requires medication. If you've ever been sad at all they instantly jump up on a hickory and say you need Anti Depressants.

If you've had a stressful life they say you have a behavioral disorder. If you have a temper ect. And they get paid to write you meds which have not been tested thoroughly for the long term by the Pharmaceutical Company's as do Cardiologist.

However a cardiologist mis diagnoses you and you can seek a second opinion. A shrink misdiagnosis you and you end up with brain damage or even a mental hospital for something that wasn't even wrong with you. A kind of socialist Take your medicine!! kind of Attitude I don't want that I have a choice I chose the latter.

So there... that's the true reason I don't like the Idea. In short I chose what put in my body and I don't just take anything the drs prescribe, I had a heart med written for me that would have killed me. I refused to fill the prescription and told them I'm sticking with my other meds.

Also my neurosurgeon wrote me for Kepra before he even confirmed it was seizures and told me to take it till i saw my neurologist. A 400$ abox med. The pharmacy would sell me Generic,said the doc requested only name brand.They Lied. I never got it filled and never took it.

Turned out he told me at the next appointment I could have taken Generic. However had I done that...Knowing I'm not having seizures...The side effects would have been very severe and may have contributed to me having seizures... I have 2 friends who are pharmacists they told me about some and then I looked into the med and the difference in effects of Name brand verses Generic The results although small,if your not having seizures it can be Great.

Also as I mentioned before I am a gun owner and avid shooter during my free time, A strong supporter in the 2nd Amendment and I know that if I see a shrink and he writes me something I don't need or misdiagnosis me I lose that privilege and can no longer purchase firearms or legally own them.  TWO BIG Reasons I don't like the idea.

I don't understand what my mental health has to do with my pain and symptoms? They all fall into categories of existing Neurological Conditions and I don't know of any condition that a person can have that they would say they have all these symptoms on a mental level. Besides a Hypochondriac.

Anyways I appreciate your reply supermum but I feel as if Ive been arguing with you about seeing a shrink more then being helped with information about this and how to cope. I understand you suggest this to everyone, I'm just a bit more reluctant to follow the advice knowing what I know about them.  I hope you understand where I'm coming from.

[supermum_ms]

If you truly do get what i'm saying regarding the benefits to getting your mental health assessed.........then why the segway about antidepressants, big pharm, law suits etc which 'implies' you not only have strong bias against pharmaceutical medical intervention but also the expectation that seeing a psych will result in a M/H dx and script for meds..........when the point was to get assessed so that you have support and diagnostic proof that there isn't a M/H issue causing it?

I'm not sure if your existing point of view regarding medication is global or just on M/H medication but what your facing if the dx did turn out to be a neurological condition, and causing your seizures, cognitive issues etc would generally require you to take medications, many of which could be M/H meds, anti seizure meds, disease modifying drugs etc

Please try to take a step back and think about what the purpose of being correctly dx-ed would do for you, try to keep in mind that any dx is only the beginning and it's not in your best interest to get too overly focused on any thing..........be open minded!!

Food for thought...........JJ

  

[Eagle6205]

He never said I needed to see a shrink, he just said that If I believed that there was still something wrong after he said there wasn't, That he would send me to one.

I wont take Anti-Depressants or some breakthrough Med and used as a they are peddling for big pharma, just so they can have a class action law suit later for it long after the damage is done.

I know what those things are capable of Ive seen many of my own friends and family deal with them and trying to get off made them literally have mental break downs and a friend of mines husband died from Seraquil.

I  found an MS specialist here in my city and I may be cancelling the University Visit. If I don't have MS they should be able to tell me if its another condition.  Ive read a lot  so far and I know how hard it is to get a diagnosis of MS.  I get what your saying though. I feel a diagnosis can be made without it however. Now if I thought I was a power ranger , Or believed I had super powers, talked to walls and stuff that wasn't there, then Id imagine I may need a checkup,CT Scan and a Shrink.