NEW - Desperate for answers

[ILL_in_ILLinois]

Hi,

I apologize for starting a new post. I'm new to the site and have a lot of cognitive issues so I hope its okay that I started a new thread.

My name is Gary and I'm 26 years old from ILLinois but originally from Maryland. I have never been sick until I moved here to this toxic state. I have Tourette Syndrome and have anxiety and have dealt with some OCD in the past. This stuff I have been dealing with recently is really different. I have over 48 symptoms so I won't name them all but some of them include: stabbing, biting, itching, buzzing sensations, headaches that burn, I have a B12 deficiency, drop foot, my symptoms get worse with heat (bathing, showers etc) internal heat (male hot flashes?) trouble swallowing, and a whole bunch of other symptoms that I don't have the time to list out. I've had a TON of testing done - all of which gets me NOWHERE! I had a spinal tap that showed O-bands in both my serum and CSF so my neuro says its not MS. He says its only MS if its in one and not the other. I forget which one. My mother comes with me to my appointments and she printed out something that proves that 40% of people with PPMS have o-bands in both serum and CSF. He agreed and said "oh you don't want that."I have a couple lesions on my brain...I think 2-4 but he says they are not "white and fluffy" like a typical MS lesion so therefore I don't have MS. He also said if the spinal tap came back showing any bands, that I definitely have MS. So then it came back showing o-bands and he says I don't have it. He's not consistent with anything he says or does. He's a heck of a nice guy, great personality and we connect on a personal level. However, he's not cutting it as my DOCTOR. I know people with MS have B12 deficiencies and all my symptoms match up with MS, I feel like crap all the time and I'm going downhill very fast.

My fear is that I have PPMS and according to the symptoms of PPMS, I do. I ask my doctor about it and he says "oh you don't want that." Well no kidding! I don't want anything! I prefer to be healthy but how about if I have something you don't ignore it just because "I don't want that." Does anyone want any of their health problems? Do people want cancer, MS, anxiety, Vitamin deficiencies or any other problem? I don't think anyone wants any health problems. He's of a foreign descent so there is a language and communication barrier there. I love him to death but he's not a good doctor and he's ignoring the facts. I know doctors rely heavily on MRI to diagnose MS and although I don't have a 'clean MRI' its not good enough for him to diagnose me.

I just know I'm too young to feel like this and I'm so tired of getting the run around. I have had MRI's out the wazoo...lumbar, cervical, thoracic, brain...with and without contrast...CT's, and a ton of other testing not related to MS. I also have high calcium which has been high for over 2 years and I wonder about parathyroid even though my PTH is "normal." I know all about that but what confuses me is that some of my symptoms I don't believe belong to MS so it makes me think parathyroid. Then there are things I deal with that don't fit with parathyroid so I think MS. For example, drop foot is an MS thing - not parathyroid. My anxiety is off-the-hook severe and that is a parathyroid thing and NOT MS. If it were much worse I wouldn't be leaving the house and I fear I'm not far from that now. I'm not sure if horrific anxiety is an MS symptom or not. From what I understand, its a symptom but not on the level that I have it.

I go downhill so quickly with each week that passes. That makes me believe I have PPMS but I'm not sure if thats possible to go downhill that quickly. I've only been SUFFERING for about a year now. Most recently I've started with swallowing problems, choking on my saliva/getting caught in my throat and interrupts my speech etc. I'm afraid to eat anymore. My cognitive problems are so bad, that I can't think for myself, defend myself etc. I go to the doctor and can't think of what plagues me every day! My memory is so horrible and its frustrating as heck. Its mainly my short term memory that is god-awful. Then I've been having these 'blank-out' moments where I don't know what I'm doing, or where I'm going, what I'm supposed to get in the grocery store etc. This is all so frustrating. I have my mom who I live with and she's a fantastic support system. However, this consumes me, my life and my every thought and conversation topic. I just want an answer so I can shut up about my health and talk about normal things. I need some kind of outlet to vent and talk with other people which is why my mother suggested I come here for support.

Does anyone have any advice...any input? I'm sorry for the lengthy post. I will try to shorten them from here on out.

Thank you soooo much for listening to me vent and for taking the time to read this. I truly appreciate it.

Hope to hear from some other members soon.

Gary

[Kimba22]

Hi Gary,

Sorry to hear you are having such a hard time. No need to apologize ... venting is just fine. We can all relate. These symptoms are annoying and frustrating to us all.

I have lesions both in my brain and spine. I'm considered Secondary Progressive MS, which follows Relapsing Remitting MS. I wasn't dx though, until it was already SPMS.

Have you considered a second opinion? I'm not pals with my MS Specialist, I go to him because I want a knowledgeable doctor who knows a lot about MS and is willing to treat it as best as is possible. You may have multiple dx and will need different drs. to treat each, but I would suggest seeing a MS Specialist to rule out MS.

You need to be your own advocate. If you aren't getting answers, seek another opinion. Don't stop until you can get some answers from drs. who can not only dx your condition(s), but also explain the "why's" or "why nots" of a dx. It's your body and you need to do everything you can to figure out what's wrong with it. Even without a definitive dx, drugs like gabapentin can be rx'd to help your symptoms.

Best wishes on your journey to a dx.

Best wishes to you on your journey to a dx.

[Sequoia]

Hi Gary...welcome to MS World!

Please don't apologize for the length of your post. You had a lot to say, and you said it very well.

I'm very sorry you're having so many symptoms and haven't gotten a diagnosis so far. It has to be scary and frustrating beyond words.

It sounds to my layperson ears as if you might indeed have PPMS, but there are other possibilities too and I'm wondering if your neuro is attempting to rule those out? He seems to lack the sense of urgency that your case warrants. You need a diagnosis, and you need to begin appropriate treatment ASAP.

I'd strongly suggest that you go for a second opinion, preferably from a neuro who specializes in MS.

I'm glad you've joined us here...you'll find lots of support and information from people who truly understand. Again, welcome!

[rdmc]

Sorry you're having issues. Just wanted to add that you mentioned you had a B12 deficiency. B12 deficiency is one of the MS mimics. Google it and you'll see it can cause neurological symptoms.

Hope you get some answers.

[Sequoia]

Just had an afterthought...we have a forum here specifically for Primary/Secondary Progressive MS. You might want to check that out too, to see how your experience compares with members who have a diagnosis of PPMS.

http://www.msworld.org/forum/forumdisplay.php?f=24

[hunterd]

GARY, WELCOME!!!!!!!!!!!!!!!!!!!! with so many sx going on, it sounds to be multiple issues, but i`m not a dr. look for a dr that YOU are comfortable with and start fresh!!! many other diseases share sx with ms, so it is better to have someone qualified treat them, and decipher them too. i hope you are able to get some awnsers soon. good luck.

dave

[Krysalus]

Hi Gary

I'm sorry to hear you are having such a hard time.

I just wanted to say that I agree with many here. Having a dr you trust and that will work with you is important. If you don't think he is taking you seriously or you don't think he will / is working with you, you should see a different dr.

A second opinion is a good thing.

And your mom sounds like a smart lady.

[GEM]

Hello Garry -

I'm joining the others and saying that you need a new doctor that will start doing some differential testing, too, to rule out some of the "me too" diseases as well as look at all the tests you've had with a fresh eye. Start a journal of your symptoms to track them and to help you remember what to tell the doctor. Use lists to help you remember things - I'm a great believer in lists and writing things down.

[ILL_in_ILLinois]

thank you for your responses!!

Thank you EVERYONE for your response! Today was a HORRIBLE day and its nice to read words of encouragement from such nice people.

I want to touch on a little of what every person said. I'm not good with these forums and I don't want to do anything wrong. I hit "quote" but that takes up a lot of space so I'll try to respond to everyone in one general post. Thank you all!

Yes, I do have a B12 deficiency and I know that can mimic MS but its also common to have it when you have MS. My neurologist is a nice guy but whoever said he's not responding urgently enough is totally accurate. He's a great guy but his knowledge as a neuro just isn't there. I actually emailed the MS Society and asked them if they knew of any MS Specialists in my area and I'm just waiting on an email back. So I am considering other options and I'm done with him. One time he gives me Valium without even asking for it and then I ask for Ativan and he says no and recommends a psychiatrist and therapist. When they start going that route you know they are claiming its all in your head and you need to move on. Anyway I was just telling him a story about how Valium helped someone I know and next thing I know, he whips out his script pad and he's writing for it. Now I ask for it, get told no and he wants to throw me off onto a psychiatrist for no reason. He's not consistent. He has done a TON of testing. I will give him that. From MRI's to spinal taps, to oodles of blood tests, a 2 hour glucose test and a urine test etc. He's been very thorough in some ways. He is sending me to a NO which I see on April 28th and then he's sending me to have the memory testing done (neuropsychologist) on May 11th. I know this may sound stupid, but I'm looking so forward to those dates. You would think its Christmas! It could possibly give me answers so I'm looking forward to it.

For the person that said I need to be my own advocate - I agree but I can't. My cognitive problems and other symptoms (anxiety etc) prevent me from defending myself. I clam up, get scared to defend myself and I just sit there and don't say anything even though I know I'm going to walk away upset. Even though I know that's going to happen, my fear and inferiority makes me do nothing about it. That may sound stupid?...but thats the way it is.

I don't want to forget anyone's comments or questions so if I forget to respond to you, I'm sorry.

Now I'm having some recent problems arising that are scaring me. It started a few days ago when I was eating a scone and it got caught in my throat and had trouble going down. I almost choked and I've been having a real hard time with it ever since. Now I'm afraid to eat any solid foods without someone around in case I need help. I ate something from Taco Bell today by myself while my mom was at an appointment and with every bite, I was holding my breath hoping I wasn't going to choke. SEVERE ANXIETY. When I finished the meal and knew I was okay, I breathed a huge sigh of relief. My mom is going to Las Vegas on vacation from the 8th-15th and I'm freaking out about eating while she's gone. She's going to call my doctor and try to get me Ativan (not my neuro) but he's going to say no because he's a cocky son of a....and if thats the case I'm going to go on a liquid diet while she's away because I will NOT eat without someone to help me if I choke. I'm going to eat Jello, Rice Pudding, chicken and stars soup and things like that which really don't have any form to them so I don't choke.

I have gone downhill so quickly and I don't know if its even possible to go downhill this quickly with PPMS. I mean even a week or two ago I wasn't having the problems I have now and/or things I always dealt with have gotten worse. Is it possible with PPMS to go downhill and have things change in a week or two? I did some research online today from my cell phone and I definitely have a lot of symptoms of PPMS but I think my symptoms fit BETTER with RRMS. I don't know. I have good phases and bad phases. Sometimes I do good for a week or a month and then I have real bad phases. So that matches up with the remitting/relapsing part but then again I never feel great by any means.

A few more things. One, whoever said my mom is a great lady is absolutely correct and thank you for saying that! Secondly whoever mentioned making a list of symptoms or keeping a diary...I have a list of symptoms and I do write them down. Thank you for that idea! Its very good when your memory is so bad. Sad thing is, even when I make a list, I still forget things or I will misplace the list or throw it away etc. Its really bad for me.

Sorry again for rambling and thank you so much for all your support. It means a lot to have people understand what you're going through. It doesn't fix the pain or get me a DX but the moral support helps a lot.

One more thing...(I promise!) Whoever mentioned Gabapentin helping...I was on that and it did help somewhat. It helped the sensations of biting, stabbing, burning, itching, cold and wet sensations etc and the twitching nerves BUT it made me a um...put it this way...we all have one and guys can be one I was so agitated and nasty, hostile, angry and because of my anger it was affecting my driving and making me psycho behind the wheel. I could have killed myself with road rage or whatever so I stopped it. Neuro was okay with it and when he asked why I stopped it I told him because it made me an a***ole and he shook his head as if to say "yeah it'll do that...I understand." Then he prescribed Lyrica which caused severe muscle/bone pain to the point I couldn't turn myself in bed or hardly move...in bed or out of bed. Also within a week my clothes weren't fitting me and I was like oh no...not going there. I read someone gained 100 lbs in a year and multiple other weight-related horror stories.

Thank you again! You guys are awesome! Take care and hope to hear from you guys soon.

Gary

[Sequoia]

Hi Gary,

How is your B12 deficiency being treated? Are you getting injections?

There's another form of MS that could be a possibility: PRMS or Progressive Relapsing MS. In that form (which is rare) there's steady progression (even when you're not symptomatic), but there are relapses and remissions.

Regardless of the form of MS you have (if indeed you have MS), a course of IV steroids might help damp down your current symptoms.

As for the swallowing difficulties, you may need to be evaluated by a specialist. There are techniques you can learn that will help; the simplest one, which you can try right now, is to tilt your chin down toward your chest when swallowing.

People with dysphagia (problems swallowing) are often put on a "soft diet" or "mechanical soft diet" consisting of foods that are easy to swallow. You might want to try that now, and use it while your mother is away. Here's some information for you:

http://www.gicare.com/diets/Soft-and...Soft-Diet.aspx

I know things seem pretty dire right now, but there is hope that your symptoms can be gotten under control and your progression slowed. Hang in there, and keep coming to us for support, okay? We care!

[happy23]

Swallowing issues

Now I'm having some recent problems arising that are scaring me. It started a few days ago when I was eating a scone and it got caught in my throat and had trouble going down. I almost choked and I've been having a real hard time with it ever since. Now I'm afraid to eat any solid foods without someone around in case I need help. I ate something from Taco Bell today by myself while my mom was at an appointment and with every bite, I was holding my breath hoping I wasn't going to choke. SEVERE ANXIETY. When I finished the meal and knew I was okay, I breathed a huge sigh of relief. My mom is going to Las Vegas on vacation from the 8th-15th and I'm freaking out about eating while she's gone. She's going to call my doctor and try to get me Ativan (not my neuro) but he's going to say no because he's a cocky son of a....and if thats the case I'm going to go on a liquid diet while she's away because I will NOT eat without someone to help me if I choke. I'm going to eat Jello, Rice Pudding, chicken and stars soup and things like that which really don't have any form to them so I don't choke.Gary

Gary,
I really love how vocal you are, and everything is described in such good detail. Well written!

Just wanted to say that many of us have issues swallowing...and it can be alarming. I feel as though the muscles are not working together to push my food down. Like so many other symptoms, this comes and goes. It flares up, disappears, and then returns. At least for me. That's what seems to frustrate me the most. I get up and honestly never know what today will bring. It might be a severe limp, maybe just fatigue, it could be such a tight girdled feeling that I cannot draw a full deep breath until the tight imaginary squeeze let's up.

There have been a few blogs on swallowing. Many good suggestions and support. A few I took away I wanted to share....take small bites, chew longer, sip water when you are ready to swallow to make the food more of a liquid consistency, and avoid breads during this timeframe.

I sympathize with your anxieties and issues and send hugs, thoughts and prayers that you find relief and a great doctor. I am currently looking for a doctor that doesn't make me feel "dismissed" or like I am exaggerating. I rarely call my doctor, actually, I have only called my neuro when I sought immediate medical attention and wanted to let them know, as they had told me to do. But when I go in for my regular scheduled appointments, I feel like a number.

So good luck in finding a doctor you can talk to and not feel intimidated by....I'm in the same boat.

Keep us posted please. We are here with you every step of the way and care.

[rubberlegs]

Gary, have you tried a NURO that specilizes in MS?

[ILL_in_ILLinois]

Hi everyone!

I'm going to try to respond again in one post if my memory will let me!

I WAS getting B12 injections but my doctor is STUPID! He gave me a shot one time, then sent me down to the lab 5 minutes later and I had my B12 level checked. When the results came back I was at a toxic level. I was at 4800 when the top end of the range should be no more than 967 or something like that. They called him at home and then the doofus somehow realized he gave me a shot and THEN sent me for the lab work 5 minutes later in the same building! Anyway so then he tested my blood AGAIN about 15-20 days after the toxic level came back and I was at a 536 which is right in the middle of the range. I never got another shot though, only one. So I see him and ask about another shot and he says "no your B12 level was fine." Of course it is! You just gave me a shot 15 days ago! My body used up 4800 to 536 in about 15-20 days. I'd say my body needs it and I'm using it up! My old doctor told me once you're deficient, you either have to go a year without eating meat or a year without any shots/supplements before you'll show your deficient again in your blood work. This current doctor is cocky as all get out and you can't tell him anything or challenge him so I just let it go. Before this doofus I'm seeing now, I started out getting a shot daily and then went to weekly and then monthly. I start with this new 'doctor' he gives me one shot and claims I'm in normal range. Hello DUH!

Thank you all for your responses to my post. I feel so welcome here and like everyone understands what I'm going through. I mean yes I have a B12 deficiency and I know that can mimic MS but I've been being treated for it until Dr. Doofus stopped them. My symptoms have been ongoing though even when I was getting shots. That makes me think its not a B12 deficiency that is causing my problems since I'm being treated and not getting better. The attending doctor over top my doctor Doofus said no one my age should EVER have a B12 deficiency and that its very odd. She said it doesn't usually happen until 60+ years old and then its common. She was thinking it might be a malabsorption (sp?) problem and they ordered a colonoscopy and I also had an endoscopy at the same time. I got it from both ends that day! That was done on the 10th of March and everything was normal besides increased acid reflux, inflammation in my esophagus, and small intestines/duodenum.

I don't want to forget to answer anyone's questions but I can't scroll down and look at your responses the way I'm responding. I do it so I don't "quote" everyone's post and take up a lot of space.

To whoever said I'm funny and they like how descriptive I am...thank you! lol I can get pretty detailed.

I had a real bad experience yesterday. Since the swallowing problem is a recent issue, I asked for Ativan. I was told no...and that if I wanted it, I'd have to come in and see the attending doctor. So they squeeze me in and I go and the woman was nice (and pretty lol) and then she called the doctor above her to come in. Its a clinic type deal so they are all doing their residency and have to report to someone over them. Anyway he comes in and he was not nice. In fact he was a complete a***ole and I wanted to smack the crap out of him...with a frying pan! He was arguing with me and telling me that I was trying to tell them how to treat ME. I stood up for myself and explained why that wasn't true etc. Then he asked me if I had been seeing a psychiatrist and I said no not right now. Then he's thumbing through my chart and sees that I saw one back a couple years ago and he says "I asked you if you saw a psychiatrist and you said no." I said "no what you asked me was if I was SEEING a psychiatrist which means currently and I told you no. I have seen one before but I'm not being seen by one right now." He was cocky, ugly and he got on my nerves. I told him I wanted a quick fix until my appointment with my doctor (at the same office) on Monday and he said "no there'll be none of that." Real cocky and I got mad and said "if anything happens to me, my blood is on YOUR hands" and I walked out...but...I forgot my coat so I had to go back in lol. Gotta love these memory problems! So I walked/forced myself back in the door, opened it real hard and went for my coat and he says to me in a cocky tone "yeah...don't forget that...you might get cold." Then I RAN out and ran to the car, got in, backed up out of the space real quick and hightailed out of there. I was so mad and upset, I was shaking and wondering why no one wants to help me get through a rough time. They are doing everything in their power to make sure I suffer. Also the doctor said "we're not giving you the run around here" and I said "no...you are but thats okay. No one knows what they are doing and I'm used to it so its cool." He didn't like that one but tough crap.

Anyway...one last response to the person that asked if I'm seeing a neuro who specializes in MS. Not currently and its a long story I don't want to get into because my post is already long enough! If you want to hear it (its not THAT long) then let me know and I'll tell you what happened. I do see a neuro-opthamologist and a neuro-psychologist very soon though so hopefully that will give me answers. I'm in the Midwest in a small town and we don't have the resources that most places have. Doctors around here are arrogant, nasty, have no knowledge of simple things etc. Medical people here are just clueless and even the nurses and different people (even medical) AGREE the medical care in this state is horrible. They do this for a living and still say the care sucks!

Thank you all for your support. You are amazing people and I feel a comfort and peace by being here. Thank you!