TheLupusSite.com banner

1 - 13 of 13 Posts

·
Registered
Joined
·
17 Posts
Discussion Starter #1
Hello everyone

Hope you are all AWAP:)

I find myself here out of desperation really, I will give you a little background, but will try and make it as short as possible as I don't want to bore you all rigid:lol:

I am a 37 yr old female who up until 2.5 years ago was reasonable healthy apart from heavy periods, due to those I was told I possibly had Endo and was given a course of 6 injections called Lupron, they basically shrunk everything down and threw me into an early medically induced menopause. That is where my problems seemed to start, I started having lots of symptoms, my spine burns, feels like someone is pouring boiling or or ice cold water down it,I have electric shock type sensations maily in my spine and scalp. Pins and needles and ares of numbness which comes and goes, patches of hot spots, feels like I have spilt hot water on myself for about 50 seconds then it goes, my joints hurt although not all the time, then in the summer of last year, 2 years after I had been on the lupron came the muscle spasms/twitches cramps, started off on my left side, mostly in my hand and then withing the space of 4 weeks was all over my body, can't explain it too well, but my mulsces seem to pulse, you can see it under the skin. I seemed to have a lot happen all in that time, I felt incredibly tired, tiredness like I have never felt before, I was also dizzy and I hurt all over, this went on for about 6 weeks, every muscle twitched, I was exhausted, I went my GP who ran blood tests came back I had borderline low ferratin levels, but she thought not enough to have any effect on me.

I was referred to a Neuro, the first one was hopeless, we moved area and was seen this week by another Neuro, he is running more blood tests and gave me a chest x ray there and then (not sure why) I felt ok (ish) for a couple of months, still had the muscle twitches and the tiredness but nowhere near as bad. Although I seem to be having some kind of episode of it happening again, at the moment I am again incredibly tired, can't hardly do anything, by the time I have had a shower I have to rest again, muscle spasms are terrible again, my mouth is very sore inside and now have cracks in the corner of my mouth. I seem to have noticed that my symptoms seem to get much worse just before and during a period (I forgot to tell the Neuro that and now wondering if its relevant) I have had an episode of a rash on my cheek bone one one side, but that has only happened once during the bad time I had in the summer. I am at a loss really as to what to do, I first thought it was MS as my brother has this and it seems the symptoms are similar, but I don't know now, I have of course googled my symptoms and that brought me here many months ago but thought nooo I don't have all those symptoms, now I just don't know. My neuro didn't really say what it could be, he is sending me for nerve conduntion studies to rule things out, he also told me to prepare myself as he may call me in for a lumbar puncture, I am waiting for the results of the blood he took, think he was testing FBC, Renal, Glucose, then he wrote on B12, and ANP (I think couldn't read his writing) is he thinking along the lines of Lupus do you think?

Would be grateful for your input, does it sound silimar symptoms?

I also forgot to mention this but when I was having the bad episode I was getting problem with my thumb area, it was very painful, achey, deep burning feeling and really hurt to open my hand out fully and grip things. I totally forgot to mention this to the Neuro too and am wondering if its relevant? My hair has also been falling out since these injections, my hair is quite patch thin in places now, I haven't mentioned that either, I put alot of my symptoms down to the injections tbh but surely after 2 and a half years it would be out my system by now?

Thank you x
 

·
Registered
Joined
·
1,999 Posts
I agree with your doctor wanting new nerve conduction results. My thought while I was reading, was that it would be a good idea to get an EMG done. I don't recommend that procedure lightly. I've had several of them done, and it is not as bad as I had once heard, but not a walk in the park either. The key seems to be to find a provider who is a good hand at doing them. The doctor also needs to be thorough to the point of obsession.

Good luck on a solution,
Sally
 

·
Registered
Joined
·
7,800 Posts
Hello Em and welcome :)

I would agree with Pink Pearl that the nerve conduction sounds like a good idea. Indeed, it sounds very much as if the neuro is taking this all seriously and is investigating thoroughly.

I have also had quite a few nerve conduction studies - I don't mind them at all but that might be because I can hardly feel them :lol:

You should mention your symptoms getting worse before / during your period as that can be releveant in some things.

Some of your symptoms are familiar to lupus for some people but as a lot of them seem to be neurological, it sounds like you have chosen well to see a neuro first.

The other option for people suffering from an auto-immune connective tissue disease (of which lupus is one) would be a rheumatologist. Your neuro might mention maybe seeing one at some stage.

I think for the moment it is a question of waiting to see what the tests give. He sounds like a good doc so hopefully you'll soon get to the bottom of this.

All the best,
Katharine
 

·
Registered
Joined
·
4,444 Posts
Lupron has been associated with a lupus like illness (evidence is too scant to say that it causes lupus); my current rheumy actually mentioned that to me but my symptoms started well after I had therapy with Lupron for endometriosis so she decided that wasn't likely related in my case.

I do think you belong here, as you do have many symptoms in common with lupus and it is at least something that should be considered/tested for. Have you had an MRI done then too? Most neurologists around here do the MRI first (head and/or spine) before recommending proceeding onto the tap.

Best wishes for figuring out what is going on. You can always ask for copies of your blood test results, and then you'll know what was and wasn't run... and can ask for the ANA test if it wasn't run. That is just the starting point for lupus though... but I do think your symptoms and how long you've suffered from them warrant an investigation into it.
 

·
Registered
Joined
·
17 Posts
Discussion Starter #6
Thanks everyone for the replies, Iwill keep you posted on any outcome.

Can anyone tell me how long I will have to wait for blood test results, I forgot to ask while I was there?
 

·
Registered
Joined
·
7,800 Posts
Hi Em,

Blood test results generally take at least two weeks. Some of the tests are longer to do.

Katharine
 

·
Administrator
Joined
·
10,165 Posts
Hello and welcome to the site.

Unfortunately many of your symptoms do sound familiar. I sympathize with your burning down the spine. It is so uncomfortable especially at night when you are trying to sleep. Hopefully the tests will pinpoint the problem and you can start treatment right away.

If your doctor suggests a lumbar puncture ask why not do an MRI/MRA first? It is a less invasive test with fewer possible side effects. If it shows positive results you might be able to forgo having a lumbar puncture.

I wish you luck with all the tests.

Take care,
Lazylegs
 

·
Registered
Joined
·
17 Posts
Discussion Starter #9
lazylegs;531070 said:
Hello and welcome to the site.

If your doctor suggests a lumbar puncture ask why not do an MRI/MRA first? It is a less invasive test with fewer possible side effects. If it shows positive results you might be able to forgo having a lumbar puncture.


Lazylegs
Yes, he did say he may call me for MRI too.

Thanks everyone, really annoyed at myself for not mentioning symptoms worse before period, will see what comes of the blood tests he ordered and see what exactly I have been tested for.

Will let you know the outcome x
 

·
Registered
Joined
·
17 Posts
Discussion Starter #10
Well, got a call from Neuro Secretary today, my bloods are back and I am to see my GP tomorrow for the results.

Hopefully I will know a bit more then, not expecting a dx tomorrow, but at least they might tell me what it isn't:)
 

·
Registered
Joined
·
6,152 Posts
Best of luck tomorrow :)

Dont forget to let us know what the doc says

Take care
Joan:rose:
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Hi Em

I would hope that you would keep a journal and write questions and symptoms down in it for the doctors. This will help you and the doctors to rule things out and schedule tests that will give you a better chance at the answers you are looking for.

It sounds like you have been having a hard time for awhile, I hope that you feel better soon and find some answers to bring you comfort.
Tammy:)
 

·
Registered
Joined
·
17 Posts
Discussion Starter #13
Hello

I went for my appointment at the GP but sadly the blood tests results hadn't been sent to him in time. I have since found out on Thursday what they are, only via the receptinosist though haven't spoken to the GP about them yet.. SHe said I have low Folate level, I am not sure what this means, if any relation to Lupus? All I know I feel awful, spent Friday in bed unable to move hardly was so tired, my mouth is very sore inside, and today my knees and thumbs hurt.
 
1 - 13 of 13 Posts
Top