Results tomorrow... :-/

New diagnosis and before diagnosis
1

Hello all,

I am going to see yet another Neurologist tomorrow - think this is the 15th to date (could be more). I have a long history of neuro conditions (see profile) and have been suffering with MS like symptoms for over seven years, which have progressively got worse over the past twelve months, with recurring spine spasms, which debilitates and takes me off my feet for up to two weeks at a time. The pain is constant; the latest symptom discovered three weeks ago: I was in work, and when I tried to take hold of a pen, I couldn’t get a grip of it. My finger tips were especially weird because they had no sensation in them, and are cold to the tip to touch. They have not improved! almost feels like my hand doesn’t belong to me - pretty much the same as my whole body when it decides to ‘pack up’ on me.

I haven’t been dx as yet, and it puzzles me because people on here appear to have different symptoms etc. I work with someone who has MS, and she is as fit as a fiddle…walks beter than me; looks healthy, and doesn’t have any relapses. Sot it makes em wonder how some manage to get easily dx with little symptoms that have only recently emerged, and yet some, like myself struggle for years and don’t feel heard by Neurologists?

My results tomorrow is from a full body scan (contrast dye). I am struggling today, and am in quite a bit of pain. The trigger being due to lying on the Dentists chair while I had a tooth extracted, so the different chair that my back isn’t used to has caused my spine to go into spasm again, and the disks are clearly protruding again.

I am just making my notes again for tomorrow, and am not particularly looking forward to the appointment, because I always feel like I am explaining pseudo symptoms - almost like I have a flashing sign saying “Liar” on my forehead.

My GP as per had splinters up his backside, and when I rang him to ask for advise re tomorrow all he could say was, “ask them what they would do differently compared to what they are doing now”. Not exactly helpful because I always end up asking them that anyway! We will see. My list consists of a total of, 44 symptoms for him to get his teeth in to.

My main focus is not to rush my time with him. I always feel like I have to hurry because the next person is waiting. Pathetic really! but it has clealry been a regular transference from previous neurologists.

Fingers crossed that I get a definate answer to this body that doesn’t feel like mine anymore :-/

Much love

Bev x

2

Hello Bev I just wanted to wish you all the best for your appointment today. I hope you get an answer to your symptoms, with some constructive way of sorting them out at last! I felt like my dr thought I was making up my symptoms (pins & needles, numbness & dizziness) but I saw a great neurologist who requested an MRI scan on my brain, neck &with contrast & have been diagnosed with MS. So far I don’t need to take medication & he has suggested 5000iu of vitamin D3 which I ordered online! I hope you get your results quickly & you managed to get all of your points across Jane x

3

Hi Jane, that’s interesting that you don’t need to take medication? I had assumed that once diagnosed it would be a given. I’m awaiting diagnosis (suspect it will be on 4th June) but would very much like not to take medication. Wonder if it’s worth me buying some of the same vitamins!

Bev, I wonder if the lady in your office was diagnosed so quickly because she had a definite MRI and lumbar puncture and therefore it pointed to it immediately? I was the other way really, I was the doubter when they suggested MS I thought what a load of rubbish and was convinced I just had a virus! Hope you get some answers because the not knowing must be horrendous x

4

Hi Jane and Tricky,

Thanks for the well wishes.

I saw my Consultant today, who advised me that the Radiologist has not yet sent a report of the mri contrast dye to my consultant. Initially, it felt like I had a waste journey. however, he appeared to be having a good day, and was happy to sit and take note of ALL of my symptoms. I think he felt a little guilty for my wasted trip, which he could have easily postponed until the report came back.

Anyway (to cut out the waffle) all of my 44+ symptoms are finally logged. I didn’t feel dismissed, and he states that the symptoms are not linked to my other neurological condition (AVM in the brain and epilepsy). I asked in his his profesional opinion what his thoughts were, and he very quickly put his hands on his head, and wheeled away from me in his chair. Leaving me feeling somewhat lost and alone (again). He said he didn’t want to comment because the results of the mri are not back, and he is referring me to a neuro nearer my home. I also go back to see him for my results in three months (feels like forever).

I have asked if he will refere to specifically to an MS specialist neuro. He stated that ALL neuro’s know about MS. I quickly pointed out that previous neuro’s that I have seen have been quick to state they are not MS specialists, therefore, unable to comment further (pretty much what he was doing) and are firmly on the fence with splinters up their bottoms. He stated that the previous neuro’s should not have said that to me, and he was confused why they would say that - explaining that they all have MS kowledge etc etc. I didn’t have the energy to state that they do specialise (he is the expert after all) I know this because I have a family of Dr’s.

SO… I threw the MS card at him, and asked him straight as follows, “In your opinion, and taking all of my symptoms into consideration would you say that they mirror, and are likely to be symptoms of MS?” he replied, “YES” but wuickly stated, “let’s not get carried away, and wait for the results, and referral to the new neurologist”.

The above (for me personally) was a step forward. My symptoms were ‘heard’ and he acknowledged my deterioration, and short remissions. So, yet again, i am back on the treadmill of waiting. Waiting for another opinion from yet another neurologist - who could potentially be arsey like the others and state they do not have MS specialism, and I also have to wait for my results in August. It feels a lifetime away. I am a very positive person, and always look for the positive, but i must admit they relapses are knocking me for six, and each time take longer to recover…I probably get one or two weeks of ‘slight’ relief, and then back on the relapse treadmill. The numbness and loss of sensation (and other symptoms) is constant - new symptoms being loss of sensation in my fingertips.

That’s it from me for now!

Wishing you both well.

Bev x

5

Hi Jane and Tricky,

Thanks for the well wishes.

I saw my Consultant today, who advised me that the Radiologist has not yet sent a report of the mri contrast dye to my consultant. Initially, it felt like I had a waste journey. however, he appeared to be having a good day, and was happy to sit and take note of ALL of my symptoms. I think he felt a little guilty for my wasted trip, which he could have easily postponed until the report came back.

Anyway (to cut out the waffle) all of my 44+ symptoms are finally logged. I didn’t feel dismissed, and he states that the symptoms are not linked to my other neurological condition (AVM in the brain and epilepsy). I asked in his his profesional opinion what his thoughts were, and he very quickly put his hands on his head, and wheeled away from me in his chair. Leaving me feeling somewhat lost and alone (again). He said he didn’t want to comment because the results of the mri are not back, and he is referring me to a neuro nearer my home. I also go back to see him for my results in three months (feels like forever).

I have asked if he will refere to specifically to an MS specialist neuro. He stated that ALL neuro’s know about MS. I quickly pointed out that previous neuro’s that I have seen have been quick to state they are not MS specialists, therefore, unable to comment further (pretty much what he was doing) and are firmly on the fence with splinters up their bottoms. He stated that the previous neuro’s should not have said that to me, and he was confused why they would say that - explaining that they all have MS kowledge etc etc. I didn’t have the energy to state that they do specialise (he is the expert after all) I know this because I have a family of Dr’s.

SO… I threw the MS card at him, and asked him straight as follows, “In your opinion, and taking all of my symptoms into consideration would you say that they mirror, and are likely to be symptoms of MS?” he replied, “YES” but wuickly stated, “let’s not get carried away, and wait for the results, and referral to the new neurologist”.

The above (for me personally) was a step forward. My symptoms were ‘heard’ and he acknowledged my deterioration, and short remissions. So, yet again, i am back on the treadmill of waiting. Waiting for another opinion from yet another neurologist - who could potentially be arsey like the others and state they do not have MS specialism, and I also have to wait for my results in August. It feels a lifetime away. I am a very positive person, and always look for the positive, but i must admit they relapses are knocking me for six, and each time take longer to recover…I probably get one or two weeks of ‘slight’ relief, and then back on the relapse treadmill. The numbness and loss of sensation (and other symptoms) is constant - new symptoms being loss of sensation in my fingertips.

That’s it from me for now!

Wishing you both well.

Bev x

6

Hi Bev, sorry to hear you had a slightly wasted journey today and that you have even more waiting to do. Although maybe you can take comfort from the fact that you are one step closer than you were yesterday? Just wanted to let you know that my neurologist is not an MS specialist but diagnosed me happily and started me on treatment. I think seeing a specialist can speed things up somewhat but it is not always necessary. If you do get an ‘arsey’ neuro and they fob you off again then I would demand a referral to a local specialist. It might be worth finding one yourself to avoid a dismissive response, use the near me function on this website. Good luck

7

Thanks for the info, and yes I am one step nearer. It’s comforting to know that you were dx by a non ms specialist neuro.

Thanks again

Bx

8

Thanks for the info, and yes I am one step nearer. It’s comforting to know that you were dx by a non ms specialist neuro.

Thanks again

Bx