Hello..I am finally diagnosed after 4 yrs!!

[Tammy826]

Hi Guys! I haven't been around in a while, I had to get off the "MS train" for a while. I was so frustrated in not having a dx & fighting SSDI that I had to have a break. Finally got a good neuro & was dx'd yesterday with MS & Lymes disease. He said a nurse from shared solutions would contact me to set up an appt. to show me how to give myself the shots(copaxone). Anyone have any advice on the meds?? I am a little nervous about giving myself shots as my hands don't work so well these days. For all those fighting for a dx & sick of  uncaring drs.....hang in there. through a lot of prayer & patience (although patience has been the hard part) it finally came! Nobody wants to be sick but when you know you are & don't konw what your fighting, it can be a relief. Thanks for all those who were there for me when I used to come on here so very upset & frustrated!!

[ccorina]

My husband is currently being tested for Lyme's.  He did two courses of oral antibiotics for 2 weeks each with no effect.  I believe standard treatment after that is IV antibiotics for 3 months or longer.

Corina

[Tammy826]

Hi sllowe,
    No, they haven't started me on any treatmnet for the lymes yet (I have been wondering what treatment is used for lymes). I have to be careful of any medications due to also having kidney disease. the doctor never really told me what type of Ms I have but I am assuming he must think its RRMS. The only reason I would question this is that from Aug.2007 until June of this year I haven't had any remissions & have gradually & progressively gotten worse. this past June I miraculously started feeling some better then for the past 3 weeks I have crash & have even started having some new symptom (dizziness), plus a headache thats lasted for 3 weeks & worsening spasms. I have always felt off balance but not reall dizziness thats lasted this long. My bouts with double vision & blurriness have also gotten worse. Maybe some of the gradual progression had something to do with also having Lymes & chronic kidney disease but who knows! I have always had trouble with my hands, they spasm so bad they almost fold in half. I have to sleep with them spread out under my head or my pillow at night or they spasm so bad at times that they wake me . Trying to write with a standard pen or tasks such as peeling potatoes really hurts too. You would think as numb as they stay ( I drop things a lot too) that it wouldn't hurt so bad but unfortunately it does!
      Thanks for all your "welcome backs", I really appreciate it!! Its so nice to have your support & our understanding, especially on the crazy things this disease does on lour bodies!! I am trying to be optimistic & to count my blessings everyday! With all that I have going on , I guess I'm doing pretty good!! Can anyone tell me if copaxone will improve my symptoms or does it simply prevent more lesions & more disability?? thanks for all your help & support!! God bless you all!

[sllowe]

Hi Tammy,

Nice to have you back.
So glad you received a dx so you can move forward. Did the doc start you on treatment for the lymes too? Double wammy for you - so sorry, but hope you see improvement soon.

How long have your hands been out of sorts? Asking because my motor skills were shot for quite sometime, but I did see improvement after a few months. I suggest someone learn the injection technique with you so your not counting on only yourself to do it.

-shell

[Nicoal]

I used Copaxone myself a few years ago. I am not currently on it, but stopped when i was going to get pregnant.  Of all of the drugs that they have for MS, I felt that this was the least damaging to my body.  It was fairly easy to give the injections.  The syringes come with a device that gives the shots for you.

It's a springloaded administrator, you just push the spring back, put the syringe inside and place it where you want the shot given.  All you have to do is push a button and it does it for you.  I found this WAY less stressful than having to push the plunger myself.  I used Shared Solutions too, and the nurse comes to your house and gives a demonstration.  It's all well done.

I never had any reactions to Copaxone, but I know it's possible.  I never even felt sick, or had "the flu" feeling.

I am actually looking into the LD diagnosis myself.  I never knew it was a huge mimic until recently. I've supposedly had MS for 5 years now. I know this sounds strange, but, congratulations on your diagnosis, lol!

Take care, Nicoal

[grannyhotwheels]

Wow Tammy... You make me never want to complain again... It's true that no matter how bad we have things there is always someone who is worse... I'm so happy you have a good doctor... That right there is the most important part of fighting any disease...

I hope all goes well for you and I look forward to hearing how you do with your treatments.

I'll be praying,
Carol

[ShadowsSister]

Welcome back, hope you'll stick around. I am sorry you have become a member, but now at least you can get treatment.

I know how difficult things can be, but you have a good doc, and Great support group that will be here for you. So hang in there. I know it helps me to know I am not alone.

I'll be keeping you in my prayers and sending you daily hugs {{{{~!~}}} DJ

[Tammy826]

Yes, its not quite sunk in yet though getting the diagnosis of MS was kind of a relief as I felt in my heart that what it was. I now have over 20 lesions on my brain & wonder if I had found this new neuro earlier & got treatment if that woudn't have at least slowed down the disability some. the lymes , however, was a suprise & I dont yet know what they will do to treat it. Thanks for all your suppoet!! :)

[HVAC]

Tammy you may go through a range of emotions this normal. I still do. This is a hard thing to get your head around. I still have trouble with it.

Alex

[Tammy826]

Thanks!!! Yes its no wonder I have felt like crud lol!! All in all I guess I am doing pretty well all things considered! Now I at least know it really is all in my head lol (or mostly anyway)!

[HVAC]

Glad you got an answer. Wow you have a lot on your plate.

The Copaxone shots are not too bad. The nurse will explain the drill. They are mostly scarey because they make this whole thing real.

Alex

[drsdonthelp]

I am in the process of seeking out a LLMD, I have had the Elisa test, but you are right it came back negative. I am not sure if they did the western blot test. I had cat scratch fever when I was 17 yrs. old so i did have one of the lyme coinfections (bartonella) this was 22 yrs. ago, and I have been having so many neurological symptoms come up mostly in the past 4 yrs.

I will not quit, as far as trusting in my doc. ha ha, we will see, LOL I try, but as you can see by my name, most of my drs. dont help. LOL

Pam :)

[Tammy826]

hello drsdonthelp, nice to meet you!! Yes its so hard , depressing & frustrating!! Make sure you doctor uses the western blot to test for lymes. When this started with me they tested me with the elisa test & it came back negative (& will 50% of the time). Hang in there, I know its hard but don't give up!! I had to give myself a break , so do that if you need to , but don't quit!! In my case neuro number 5 paid off, so be absoluting trusting in your doctors!!

[Tammy826]

Thanks Lulu!! I really missed you guys around here! My neuro said he would have to "mull" over what to do about the lymes. I know about 6 yrs ago I work in a tick infested area so I probably had it then but have had MS symptoms for probably 8 or 9 but didnt think anything of it (thought I had worked too hard or something lol). From what I have read if they had caught the lymes earlier then it could have been treatable but since I ahve had it so long , I guess I am stuck with it. I also have hyperparathyroidism & 4th stage kidney disease  so I hope thats enough proof for SSDI (ugh!!!). Also, I guess I should talk with my kidney specialist about the effects of the copaxone on my kidneys. Thanks for your help!! ((HUGS)))

[drsdonthelp]

Tammy, I don't think I have met you yet, but I want to say to you, I am so glad you have an answer. I am going on 4 yrs. as well. The no. 4 has always been my lucky number so maybe I will get a diagnosis of MS or Lyme. I am on the path of both right now, so I have no idea, I just know that it is something, and so far have hit dead ends.

Of course we don't want to have ANY kind of disease, but like Lulu said, it's getting the name in order to start treatment.

Good luck with starting the shots and getting to feel better.
Pam

[Lulu54]

Wow, Tammy.  It's good to see you back here even though the news kind of s uck s.  Getting a name for your problems is good and I'm glad to hear the doctor is getting you started on treatment immediately.

I don't know that we have many people who have been dx'd with both MS and Lymes.  Are you seeing a different doctyor to treat the Lymes?  That one can take a while from what I understand of the disease.

I am so glad you hung in there and didn't give up on getting answers.  As for the copaxone, just search this community for copaxone and you will find tons of tips.  Remember at first the shot may be uncomfortable, but your body will acclimate to the drug and pretty soon it will just become a routine part of your day.

Welcome to the club here that no one really wants to belong to.

hugs, L